Such a Pain! (On a scale of 1-10…)

It’s funny, I haven’t blogged for quite a while, but I felt the need today, and when I came to write the post I found this one already started but not finished, on the exact same subject!  It was drafted from January of LAST YEAR, so some of the details are no longer current, but I’m gonna leave the text anyway and just add to it at the end…

Circumstances this week (1.5 years ago) brought to my attention the fact that I, perhaps, hide my pain too well.  I’m not sure how that’s the case, I feel like I whine about it non-stop sometimes.  I am constantly upset with myself for not being able to better hide my pain.

I have dreams once in a while in which I’m tortured relentlessly, but somehow manage to make it through without uttering a whimper.  I wake up from those dreams feeling both proud, that I was able to go survive it all without caving, and disappointed because I know I can never come close to that in real life.  The trauma and emotional upset, of having been tortured all night long, tends only to hit me later.

And therein lies the rub.  I am in in constant pain, and have been since I was young.  I take a number of meds that help keep it at a bearable level, but I think bearable for me is quite different than what bearable would be for anyone else.

When I see a doctor, and he asks me what my pain level is, I just throw out a random number.  I have never understood those pain charts (though at least this one is cute:  Every time I have broken a bone I’ve started laughing uncontrollably.  The worse my pain is, the more I try to smile and laugh to make it through.  I may grimace in between, I may moan and groan, or whimper uncontrollably when I am half asleep, if it’s bad enough I may sputter and cough, or cry out uncontrollably, but under most circumstances I will do my utmost best to hide it, or brush it off with humor.


Here begins today’s rant…  The whole pain-scale thing is really starting to get on my every last nerve.  Every single time you talk to someone at a doctor’s office now, they want to know where your pain is on a scale of 1-10.  They have to mark it down in their notes so they can feed it into their computer, presumably to track whether they’re “helping” you or not.  It’s such bullarky.

My pain scale is different than your pain scale.  My pain scale today is different than it was 6 months ago.  Pain is relative by it’s very nature, it’s also fluid.  When you’re in constant pain your body adjusts to it, and one pain is not the same as another.

So when a doctor asks what my pain level is I have to ask “overall, or in the realm you care about?”  They always look at me sideways when I ask this.  “Well, where is your pain?”.  Everywhere!  It’s everywhere.  My neuralgic pain is system-wide.  My arthritic pain is clustered in and radiating from myriad joints.  My muscle pain depends on what got ‘over-used’ 2 days ago.  My back pain varies from moment to moment.  My arm pain is ever present, but sometimes so bad that I can think of nothing else.  When one pain relaxes a little, the others start screaming louder to garner my attention.  I sometimes rejoice when I get an acute injury, because I know I’ll have one focal point stealing my attention for a little while, and the rest of my pain will be forced to fade into the background, if only for a short time.

I can’t explain this every time, though, so I generally just leave it at a “yes, everywhere” and the doctor or nurse either says “well, just give me a number to put in the chart” or they say “let’s focus on the pain you’re here about today”.  And this is where I guess a number, randomly, because the pain chart is completely meaningless to me.  1 is no pain, they say.  10 is the worst pain you can imagine.  I can’t imagine saying anything less than 3, just because I can’t even remember a day with no pain, I have no idea what that would be like anymore.  The worst pain I can imagine?  How can you imagine a pain that’s worse than the worst pain you’ve felt, if the worst pain you felt caused your eyes to roll back in your head and your body to move involuntarily?  If that happens fairly regularly, then you can’t say it’s the worst you can imagine, because experience tells you there’s always something worse.  The worst pain I could imagine would probably kill me, maybe put me into a coma, how the heck do I know?  If I can process your words and respond then I can’t possibly be at 10.  The worst pain I’ve seen so far must be a 9, but I’ve seen it fairly frequently lately.  3-9 doesn’t leave all that much room for nuance, really.

Average is supposed to be somewhere in the middle, though, right?  So the middle from 3 to 9 is what, 6?  Can we use fractions?  Am I having an “average” day?  Maybe I should say 6 or 7 if it’s a ‘normal’ day for me?

But here’s the rub. if you tell medical professionals that your pain is nearly always higher than 5 they don’t believe you.  At best, they think you’re exaggerating — maybe they think you don’t understand the scale — at worst, they think you’re drug-seeking.  If you’re smiling and trying to grin and bear it then you’ve just broken their entire scale of sad faces, so you can’t possibly be being accurate.  For your own protection, it’s best to round down.  Except if you’re not in a high amount of pain then your care doesn’t seem pressing, either.

It’s a catch 22, and I absolutely hate it.  I hate dealing with it every single time.  I’ve gotten to the point where I just want to tell them to look at my face and try to figure it out for themselves, but I know that would screw with my medical charts in very bizarre ways.

Do you have to deal with this on a regular basis?  Have you figured out a solution or do you just pick random numbers as well?


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Filed under Disability, Other, Rants

So I Said to Myself, Self:

I sing to myself all the time. There is nearly always some song or other stuck in my head, on repeat, and it generally only fades away when another song has supplanted it. On rare occasions, listening to the entire song will cause it to fade at the last note, but that doesn’t work as often as I’d like it to. Much of the time I don’t mind, it’s like I have my own little sound track and I can usually switch tracks when I want to, though the auto-play often gets stuck on one particular song for days or weeks, and that can get incredibly annoying.

Sometimes I talk to myself, too. Sometimes I even argue with myself — and once in a while I win — but I usually save the heated arguments for when I’m alone, and I usually just let those play out in my head. (It’s worth noting, for those of you who know me on Facebook and saw that gem of a quote from Fred today, that he knew nothing about this blog entry, and most of this post, including the previous sentence, was written weeks ago.)  But the singing? I made a conscious decision a while ago not to keep the singing to myself, and I thought I’d tell you why. Just in case you run into me somewhere and wonder why I’m walking along singing, seemingly oblivious to the fact that I’m, you know, in public, and people — possibly including you — are looking at me funnily.

Here’s the thing. If a kid talks to himself while he’s playing alone, most people think it’s really cute. Adults nearby often sneak peeks, trying not to get caught watching, so they can catch a bit of what he’s saying when he doesn’t know anyone’s listening. Of course, if he did know the adult was there he may just go on exactly the same anyway, because he’s probably absorbed in his own little awesome world, but I digress. Why do we do this? Because it’s adorable, that’s why. But why is it so adorable?

Because we know that that kid is completely engrossed in his play, and completely free to follow his imagination, or work out his train of thought in the way that comes most naturally to him in that instance. He’s not burdened down with all of the rules and regulations that we’ve placed on our ridiculous adult lives, saying we can’t do this or that or the other because so-and-so is watching, or what’s-her-face might see, or the men in white coats may come to take us away. We call it the ‘innocence’ of childhood. And I think we stand there, listening, remembering days when we felt free to play out our imaginations out loud, unbound by unwritten rules that make us confine our mind til it’s left with no outlet but to ricochet endlessly off the inside of our skull whilst slowly driving us mad.

If an adult gets engrossed in something and starts talking to himself in public, barring some recent tragedy, people generally think he’s losing his sanity. Someone, somewhere, decided that talking to yourself after a certain age, means you’re ‘nuts’. Then someone else came along and jokingly decided that you’re only ‘nuts’ if you answer yourself back, and everyone laughed, and went on knowing that no, really, you just can’t talk to yourself in public.

Now, granted, there are some rules regarding self-talk that make sense. If you go talking to yourself all the time it’s going to annoy people around you if, say, they’re trying to watch a movie, or read a book, or hear a sermon, or cross a tight rope on a unicycle while balancing an egg in a spoon with their mouth. But does the general public require you to be silent while you’re getting your groceries, or sitting at the park, or checking your post office box? I mean, if you took your kid or your boyfriend or your grandma with you you’d probably be talking to each other a lot, surely one voice is less annoying than two.

So why does it disturb us so much to hear someone talking to himself past a certain age? I mean, it’s easier to get away with in the age of the cellphone, especially now that wireless earpieces are so popular and upstanding business people go walking down the street arguing with ‘themselves’ all the time. But you can bet most of the people they pass still do a double-take and immediately start looking for the device that makes this ‘okay’. Because if it turns out he’s not on a Blackberry or something, and he really is just arguing with himself, you can bet they’re gonna start walking a little faster.

When you really stop to think about it it’s a rather strange thing. What is so cute in little kids is somehow troubling in adults. The freedom we envy in our children we abhor in fellow adults. Apparently, growing up means you’re supposed to grow boring, kill your imagination, and stop being friends with yourself.

It’s all a little silly to me. Especially considering that some people, the few who have ‘proven’ themselves in some way, maybe by being rich, inventing something, having an enormous IQ, having a book on the best-seller list, get called eccentric and get a free pass on these kinds of rules, but anyone who hasn’t met some standard of proof — a standard which is also unwritten and ridiculously fuzzy — is considered ‘nuts’. You do get a free pass if there is audible music or you have headphones on and you’re singing.

I’d been thinking about these things for a while. I’ve also been working on my music quite a bit over the past few years, debating whether I should take this whole singing thing more seriously and consider trying to make a real album. I’ve been singing in church for years now, and practice is required, so I go around singing at home much of the time, and I’ve always sung along with the radio in my car. One day I was singing in my car and I got out to go into the little post office in our village. I would normally switch to humming, but it was after hours, if I remember correctly, and no one was around, so I just kept on singing. Someone walked in as I was there and caught me off-guard. I figured they had heard me when they walked on so I might as well keep on singing, so I just did.

And it was incredibly freeing.

I mean, at some point in my past I would have been worried about offending people’s ears, but I’ve been assured by most people I know that my singing voice is actually pretty, and since I almost always sing on-key the chances of making anyone double over in pain, or even cringe, seem fairly low. Unless of course, they’re offended by the lyrics, and I do try to stay conscious of the content and adjust my volume or hum the parts that I think might be somehow offensive to someone around me. But allowing myself to just sing when I want to sing, as long as it’s not going to be interrupting anyone or become an annoyance, has taken a burden off of me that I never even knew I was carrying.

So, if you see me singing to myself when I’m out and about just know that I’ve decided I don’t need to grow up in that particular way :P

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Filed under Humor, Music & Songs

The Audacity of Hope

I don’t often write stories, and I’m a little leery of putting this one up, but I need to.  I started it months ago but just couldn’t finish it at the time.  This may be the first in a series of stories, the rest of which should not be so dark, I’m not entirely sure I’ll get around to finishing the next one, though (I’ve been working on it for a year or more and it’s not half done).  In any case, there is some content here that will be disturbing to most people, so proceed with caution.

All characters in this story are fictitious, but certain themes run repeatedly through our community, and we have lost far too many.  While some of the characters here may seem to have bits and pieces of various people, they are not meant to be representative of any individual or group.  It is important to examine ourselves, our perspectives, our delusions, and our blind spots.   Things are not always what they seem.   Most aren’t evil, but some people are.   Most aren’t completely mistaken, or misleading others, but some people are, and do.   No one is completely innocent.

If you recognize yourself or someone else in one of the characters, it is coincidental.  Before you get too upset with me, remember that this is just one possible story, about one fictitious girl and the people around her, in one little corner of a world that only resembles our own. Though those who know me well will likely see parts of me in at least one of these characters, I have tried to write from various perspectives here, and it should not be assumed that I align with any particular view or statement or conclusion of any of these characters.



Once upon a time there was a little girl named Hope.

Hope, so named by her optimistic young mother, was a fairly easy baby.  She slept every night, entertained herself for hours, and rarely cried.  Unfortunately, her mother was not expecting all the work involved in raising a child, even an easy one, and didn’t fully appreciate Hope’s demeanor.

Each diaper change reminded her of the fun she could be having doing anything else.   Each time her daughter wanted to nurse she cringed.  Formula was out of the question — babies were expensive enough already — but the thought of the little leech sucking her dry was enough to cause panic attacks.   So, she fed her often enough to keep her from starving, and started mashing up a little of her own food for her as soon as she could get away with it.

She was eventually able to ditch the nursing bras, as Hope started taking regular milk and solid food, and life was better for a time.  Freedom was obtained, at least to some degree.  She was able to pass off the easy-going toddler to friends and family members on a fairly regular basis, and she regained a semblance of a life.

As Hope began to grow, though, it became apparent that something was off.   She wasn’t talking like the other toddlers, and she was a little too happy to be left to entertain herself so often.  This honestly wasn’t a problem for her mother, who was more than happy to avoid the clinginess she saw from other toddlers.   Hope had been a leech as an infant, after all, and she was well and truly happy to be past all of that.   Potty training was going well, and once the diaper stage was over she would be free.

But as time went on, other people started noticing the differences and became concerned.  She started having to field little comments and questions from friends, family members, and random strangers on the playground (she sometimes sent Hope to play in the sandbox — where she would pick up sand and watch it fall through her hands over and over again — just to keep her occupied, so she could text her friends in peace).   Hope was happy, and Hope was letting her live her life, she honestly couldn’t see what the big deal was.

But soon, everywhere she went someone would want to talk about Hope’s “issues”.  People started pointing out the ways Hope moved and asking if she did that all the time.  Words like “stimming” and “spectrum” started getting thrown around.  Suddenly everyone she knew was concerned about her child’s development.   It was exhausting, and she wished people would just leave her alone about it.   Hope was happy, couldn’t they see that?

So she ignored them all as long as she could, and just got on with her life. When it came time to put Hope in preschool she was ecstatic.  Even more freedom!   There were no tears cried on the first day of school, for either of them.   After a few weeks, though, she got a call from the preschool.  It seemed they had joined the chorus; they wanted her to get Hope evaluated.   Since she couldn’t exactly ignore them she went ahead and went through the motions.  And low and behold, they decided her daughter had Autism.

Her daughter.   Autism.  Of all things, her own daughter was a freak.  Great.  Her luck, this would involve short buses at some point.   If that won’t mess up your social life, nothing will.  She had been grooming her boyfriend and was pretty sure he’d ask her to marry him soon, but what are the chances he’d want to take on a ‘special’ kid?  Her life may well be over.   Great.

They told her Hope would need therapy, lots of it.  They said early intervention was the key and threw a bunch of letters at her, like ABA and PT and OT and … she just stopped listening at some point.   She decided to just nod her head and go with whatever they wanted to do.   It was clear that her social life was gone.  And with all the therapy sessions she was once again tied to her daughter, nearly 24/7.  And the paperwork.   The paperwork was endless.   Hope had become a leech again, without even trying.

Her life suddenly revolved around a preschooler, completely.  Every day was scheduled.   If she wasn’t busy filling out more paperwork she was shuttling the kid to one therapy session or another.   Everyone she knew was suddenly an expert, and she was being inundated with links and books about all the latest fad diets and treatments.  The noise was deafening.   She couldn’t talk to anyone without them asking about Hope, they didn’t even care about her anymore.  Hope might be happy, but what was she supposed to do with a broken kid?  She no longer had time for dating or partying or anything.

She was reminded of those early months, tied to a nursing baby, stuck at home… unable to have a life.   At least then there was a time limit on it — a baby wouldn’t nurse forever.   But amidst all of the noise she kept hearing how autism was a lifelong thing.   Early intervention could help, they said, early intervention and endless therapy was necessary, but there was no real cure.  Her life was forever over.  She saw stats somewhere about how couples with autistic kids get divorced, and knew that she’d probably never get anyone to marry her now (that boyfriend had taken off a while back).   She was frequently stuck with other parents in the waiting rooms at various therapy sessions, and they often talked about how their children would probably be living with them for the rest of their lives.  Forever.   No end.

And that’s when she really started getting angry.   The little leech, innocent as she might be, had stolen her life.  She didn’t sign up for this.  This is not what motherhood was supposed to have been.  Her daughter was supposed to be singing her ABC’s and coming home with macaroni art and dressing up for ridiculous school plays to entertain her grandparents, not stuck in an endless string of therapy sessions just to get her to stop acting like a freak.  And there was no way to deny it at this point, her daughter was becoming downright weird.


The older Hope got, the more obvious it was that she was different than the other kids. She was happy to be left alone — she liked to be free to watch the world, study the way things moved, and get lost in all the beautiful patterns around her — but no one was leaving her alone these days.   People were constantly bugging her and making her do things she had no interest in doing.  They kept trying to stop her from learning and doing the things she needed to do.  They kept forcing her to look into their scary eyes, which were always trying to reach into her soul and steal glimpses of things they had no right to see.  School used to be fun, but now it was just torture.  Everyone treated her like she was stupid and she didn’t know how to convince them she wasn’t.

But worst of all, her Mom was mad, all. the. time.   She was always mumbling about how “autism” had stolen her life.  Hope didn’t know what autism was, exactly, but she knew she had it, and she knew everyone wanted rid of it.  But whenever Mommy started ranting about autism she would list all of the things that made Hope, Hope.  Like so many things in her life, it was very confusing.  Mommy said she wasn’t mad at her, but she was always mad at autism, and this autism sure sounded like her.  Mommy always said it was bad to lie, but Mommy lied a lot, and Hope suspected she was lying about this, too.

So Hope tried really hard to cheer Mommy up, to please her teachers and make the therapists happy and even to make friends so they would stop talking about all of her ‘social problems’.   But it was hard.  There were rules for when to do what, how to be normal… but there were too many exceptions to the rules and no one was willing to explain them to her.  Other people broke the rules and no one seemed to care, but every time Hope broke a rule, even if it was one she had never heard about before, she got in trouble.

And Mommy was always mad, and she had found new friends that were just as angry about autism as she was.  Sometimes they would get together and drink wine and rant and rave about how evil autism was, how it had stolen all of their children.  Mommy always thought Hope was sleeping, but it’s hard to sleep through that.

Hope saw a show one day where a mom was really upset about something, and her daughter gave her a big hug, and it cheered her up.  So the next time Mommy was upset Hope ran up and gave her a big hug.  She just shoved Hope away and asked what she was doing, it was too hot for hugs.   Except it wasn’t hot.  But Hope never tried to to hug her again, except for hellos and goodbyes, where it was required.   So confusing.

Hope didn’t know how everyone else learned all the rules and exceptions.  People kept telling her she had no common sense, though.   Maybe there was supposed to be a pre-installed rule book in her brain, and God just missed passing out that piece to her.

To top it all off, everything was overwhelming.   The neighbor liked to mow his yard every Saturday morning really early, and the sound of the mower made Hope sick.  She couldn’t escape the noise, even hiding in a closet with 5 pillows over her head.   Mommy didn’t seem to notice.  Sometimes there was so much bustle in the hallways at school Hope felt like a minnow in a sea of piranhas, and she had to hide in a bathroom stall until things calmed down.   No one else seemed to notice.  There was a high pitched squeal in one of the classrooms, whenever Hope was there she could hardly hear anything else or concentrate on anything, it was so distracting.  No one else seemed to notice.  There were a million little things that made life hard for Hope, and no one else ever noticed.   Hope learned a long time ago that if she complained about them she would be laughed at, so she just tried to figure out how to live with them.

Drumming her fingers on her desk helped break up that high pitched squeal, but it annoyed her teacher.   Rocking helped calm her down when the world was going crazy around her, but apparently rocking made her a freak.   Every time she found something that soothed her and helped her do better, someone would laugh at her or tell her it was weird and she needed to stop doing it.

So Hope started studying people. She started trying to act like the other girls she saw, talk like them, do the kinds of things they did.  There were a lot of things she just couldn’t do, but she tried.  Maybe other people did notice after all, maybe they had been through the same thing and had already learned how to deal with things on their own.   Whenever she saw someone doing something that seemed like it might help, she would watch them for a while, and see if anyone made fun of them.   If no one seemed to notice, or no one cared, then she would study them a while longer, and practice doing it when she was alone, until she could do it exactly the same as they did.

Every once in a while she’d get lucky and the news station would run a story about something that other kids did to “gain control”.  The newscasters were always ominous, telling parents they needed to watch out because their kids were doing dangerous things, but the things they showed were intriguing.  Things like eating disorders and cutting and suffocation — they all sounded horrible and shocking at first, but then they would interview a kid… and the kid would say how it helped him feel in control, grounded, how it helped calm the pain, and Hope would wonder… The best part about the news programs was that they always told parents how their kids were hiding these things.  It was like an instruction booklet.   Hope loved rules she didn’t have to try to figure out on her own.

She tried a lot of things.  Sometimes they helped, sometimes they didn’t.   She kept the things that helped and tried integrating them into her life, eventually.  Sometimes people still made fun of her for things others could do in the open without ridicule, and she never could figure out why.  She had to abandon many things, but she managed to hide a few and every once in a while she found something she could keep.

As time went on Hope thought she was doing a pretty good job.  The world was finally starting to make a little sense.  She had enough coping mechanisms that she was no longer having to hide in corners or closets or bathroom stalls very often.   She almost never freaked out and cried til she puked anymore, and even the therapists seemed to think she was doing a great job.  But Mommy was still mad.   Mommy was always mad.  And Mommy had taken her anger to the internet.


“We will win this fight.” Hope’s mom told herself that every morning.   She had accepted that her old life was well and truly gone, and had decided to pour herself into the fight against autism.  This disease had stolen enough of the world’s children, and she was starting to understand who was to blame.   She wished she hadn’t ignored all of those emails and books that people had tried to get her to read back when Hope was a toddler.  Long ago her friend Mary had tried to tell her that there were cures Big Pharma didn’t want people to know about, but it had gotten lost in all of the noise.  If she had looked into it back then maybe she could have cured Hope.  She had tried the diets and the supplements and some of the more expensive treatments anyway eventually, but she had known it was a futile effort.  It was too late for Hope.  She was too old.  The damage was done, permanent.   Autism had stolen her daughter long ago, and all she could do was show her to the world and try to help others avoid the same fate.

Some of the treatments had worked, at least.  When she put Hope on a gluten free diet all of that ridiculous rocking had finally subsided.   With the addition of a couple of supplements she started hearing good reports from the teachers and therapists.   And it had been a while since she’d been called into school because her daughter was cowering in a broom closet over a fire alarm.

But the autism was still there.  Still hiding behind her daughter’s eyes, messing up her life in a million little ways.  At least she had finally found some friends again.  Talking to people online wasn’t as good as being able to go out and party with a group on the weekends, but she had found a whole community that didn’t run away when she told them about her daughter’s problems, and there were a few parents in the area she could hang out with at least.

Blogging was fun, really.   It wasn’t her favorite thing in the world but it wasn’t bad.  She had always been a decent writer.  If she did it right, she could make a little money at it, and she loved having an excuse to carry her camera around all the time.   The one thing autism hadn’t managed to steal from her daughter was the incredibly good looks she’d gotten from her mother, and she soon found that with creative camera angles she could hide her weirdness when she wanted to.

The thing she loved most about blogging, though, was that everyone suddenly cared about her again, and not just about Hope.   When she first started blogging she had tried to present only the good side of her life.   If you can’t say anything nice, and all that jazz… but the more comfortable she got with the media, and with her online friends, the more she started sharing.   It turned out she got more response to posts the more uncomfortable they were, so she started being more real more often, and her readership soared.   People all over the world were coming to her blog to commiserate with her.   People new to the community with younger kids started asking her for advice, and she was more than happy to give it.  She ate up the attention, and she kept on sharing.

She was still mad at autism though, and she used her new soapbox to help teach people about who was responsible.   She saw it as a war against a machine, and it was a war she was going to try to find a way to win.  Since the alternative treatments had helped control Hope’s issues some, she had been able to cut back on some of the therapy sessions and other nonsense, and this gave her more time to concentrate on the fight.

And then puberty hit, and all hell broke loose, so to speak.  She had been warned about puberty, but she was not prepared for this.  Hope started to sulk all the time.  The happy little girl was gone, replaced by a moody, stinky teenager, who had no common sense whatsoever.   Every single thing had to to be spelled out pedantically for her, from the need to wear a bra to what to do with a pad… and every single discussion led to her stomping off in a rage.  The last straw came when she walked in on Hope in the bathroom one day by accident, and found her cutting her leg with a razor blade.  Not shaving, mind you, cutting into her leg, with a straight razor.   And her reaction to being caught? She held up the bloody razor and started screaming.

After everything she had done to fight autism, her own daughter was threatening her with a razor blade and screaming bloody murder.   She was at a loss for what to do, so she ran out and barred the bathroom door until Hope calmed down.   Once she’d gotten a drink of wine, and calmed down a bit, she decided she’d better document the ordeal.   Maybe one of her friends would know what to do.  She found her camera and went to see if Hope had calmed down enough for pictures.   She found her curled in a ball, crying and rocking, as if she were the one who had been threatened.   There was blood all over the bathroom, but the bleeding seemed to have stopped on it’s own, so she just started taking pictures.


Life had gotten better for a little while. Hope had made a few friends, they weren’t close, but they were something.   She had been doing well in school and therapy and had built up enough coping methods that she could navigate her days without any major meltdowns.   But her mom was still angry.   It didn’t seem to matter how much better Hope was doing, her mom just kept right on complaining about how much autism was ruining her life.   It was clear by this point that when she said autism, she really did mean Hope.

Hope wasn’t very good at picking up on nonverbal cues, but there was no way to mistake her mom’s hatred.  Sure, she was always pandering for her friends and blog readers, telling them how much she loved her daughter in spite of the autism that had taken over their lives, but it was clear by the way she acted that those were just lies.  Mom used to try to make her readers think that her life was perfect, except for the autism, but that changed after a while.  Now she mostly just told them how awful autism (Hope) was.

Mom seemed to think Hope didn’t even understand what the blog was, but how could she not?   Mom’s every waking moment was spent either writing a blog entry, reading comments on the blog, talking to one of her online friends, or harassing Hope with that blasted camera.  Hope read it every once in a while, just to see what Mom was saying.   Most of the time she wished she hadn’t, but morbid curiosity kept her going back.   And Hope wasn’t the only one that knew about the blog.  The other kids at school knew, too.  Yeah, her mom posted ‘anonymously’, but it was a fairly small town, and someone had figured it out.  The other kids started perusing the blog and the torment and bullying she had worked so hard to escape from started up all over again.

It wasn’t hard for them to find fodder, either. Her meltdowns weren’t all that common anymore, she had worked hard to get them under control, but her mom had taken to snapping shots whenever she had one, and then describing them in detail on the blog, to educate others on the realities of autism.   And when she didn’t have any new embarrassing stories to post about she would just tell an old one from when Hope was little and lost in the world.  Sometimes those old stories were kind of cute, but there was always an undertone, she was showing the world what autism had done to her family.  The bullies at school ate it up.

Life had become hell, and Hope had no idea how to escape.   She thought about killing herself from time to time, but she knew what that would mean, and as bad as things were, real eternal hell had to be worse than this living hell that would surely, eventually, have to end.

And then she hit puberty. People were always warning kids about puberty.  Showing stupid videos about life changes that all the kids just laughed at, because most of them were filmed in ancient times and they were so very ridiculous.  Hope knew better than to ignore them, though, because she could tell this meant new rules she would need to learn.  Unfortunately, they didn’t cover half of what she needed to know, and she couldn’t make words come out when she tried to ask anyone.

Her mom was no help.  No big surprise there.  After she started her period, she managed to find a way to tell her mom about it, but all she did was point out some tampons and panty liners in the cabinet, and say she’d better not catch her stopping up the toilet or leaving messes anywhere.   She didn’t even know if teenagers were really supposed to use tampons, they hurt when she tried them, but she was afraid if she asked too much it would end up on the blog and everyone at school would know.

Hope was out riding her bike one day when the neighborhood bully, a girl a couple years older than her, started yelling and laughing about bouncing, and asked Hope why she wasn’t wearing a bra.  Hope had never thought about bras before.  She went to ask her mom about it, for lack of anyone else, and was met with peals of laughter.   After she finally stopped laughing she took Hope to a store and helped her pick out a few one-size-fits all kind of bras, so that she wouldn’t have to bother again later.

And that was when Hope got angry.   Hope was confused a lot of the time, but one thing she knew for sure was that it was a mom’s job to help her daughter enter womanhood.   Hope had been working hard, for years, for her whole life, to learn the rules and follow them and not make waves, and her mom still hated her.  Mom would always hate her.  Mom said she hated autism, but what she really hated was Hope.  Maybe she hated autism too, but she hated Hope.  Maybe Hope deserved to be hated.  Maybe this autism really had stolen her away and destroyed the perfect little girl her mother would have had otherwise, but Hope was what was left.  And Hope was trying incredibly hard to be the best Hope she could possibly be.   And even though her mother hated her — even if it was justified — if she couldn’t even live up to the basic requirements of her job as a mother, then Hope was done.

Hope stopped trying to please her mother after that.  Finally realizing that it was a futile effort.   She spent her energy, instead, on just trying to get through each day.   Hope had never really gotten angry at people before, but she found it started happening more and more often.   She figured maybe it was contagious.   Her mother had been mad for as long as she could remember, maybe it was genetic and puberty brought it out.  For whatever reason, she found herself lashing out at people more often, instead of only cowering.

She knew that was a really bad direction to go, though.  Hate and anger were toxic.   She had seen what it had done to her mother, and her mother’s friends; and genetic or not, she wanted no part of it.  So she started trying harder to control her outbursts and meltdowns.   It was impossible.   Most of the little things she’d picked up as coping mechanisms over the years simply did not work for this stuff.   She was constantly lashing out and getting in trouble anyway.

She got hurt one day and found out that pain actually helped some, though.  Pain tended to steal her focus away from the things that were bothering her, and it made it easier to ignore the triggers.   But pain was hard to use.  Banging your head against a wall wasn’t exactly socially acceptable, or particularly safe.   And most things that cause pain only last for a very short time.   She needed something she could take with her.  She started thinking back to some of those news programs and remembered the one on cutting.  She wasn’t too thrilled with the idea of scars, but getting cut didn’t just hurt when it happened, the pain tended to linger.  It was distracting in a way that made her rule it out a few years ago, but maybe it was what she needed now.

That news story had showed kids with scars all up and down their arms.  Hope thought that was ridiculous.   Why would they want to have to wear long sleeves for the rest of their lives?  So Hope picked a place that no one would likely ever see (face it, no one was ever going to go out with her anyway), and determined to only make a small scar.  Infected cuts hurt longer, so she just grabbed an old razor blade from her mom’s toolbox instead of getting a new one out.

She couldn’t make herself cut deeply at first.  She just kind of scratched her thigh the first time.  It didn’t help at all, so she cut deeper the next time, and that did work.  She felt guilty, and stupid, and more broken than ever, all day long.  The pain was a constant reminder of what a failure she was.  But it also distracted her from everything.   The cut got infected and started itching and that worked even better.   But she got a little worried about getting caught if the infection got too bad, so she put some ointment on it eventually, and it healed up.  After a few days she decided the experiment had been a success, and she cut it open again, in the same spot so she she wouldn’t end up with a whole lot of scars.  She could explain one scar away, even if someone did see it.

After a few weeks Hope had found a new routine, and was getting her outbursts under control.   She bought a pocket knife and started carrying it with her, just in case she needed to make the cut deeper.  She was still using other coping mechanisms some, but the cutting was the one that really worked.   She felt like crap all the time, but at least she was able to hide it, and everything else, passably well again.

She didn’t care anymore if her Mom hated her, though.   And she had stopped trying to please her.  She did the bare minimum on her chores, to avoid the fights, and avoided her as much as possible.   She couldn’t tell whether Mom even noticed, but she didn’t care.  With the tantrums and meltdowns down some again she was able to slide under the radar and wasn’t being harassed as much at school, and that worked for her.  Until Mom walked in on her in the bathroom one day.

Of all the people to catch her cutting, it had to be her mom.   Her self-centered, angry mom, who already hated everything about her.   And now she knew.  She knew her daughter was not only stolen away by autism, but was now one of those freaks the news stations use on primetime stories to scare other parents.   Her mom, who blogged about everything.   Her secret was not only out, but out in the most horrible way possible.   The whole school was going to know by tomorrow.   And to top it all off, she’d been caught with her pants down, and Mom was standing there in the doorway with a look on her face that Hope couldn’t quite place.   She just stood there looking… what?  What was that?

Hope didn’t know, but she had yelped and thrown up her hands as soon as her mom walked in, and after the yelp she had started hyperventilating, and she couldn’t do anything but stare at that look on her mother’s face.  Pain or no pain, blood or no blood, she was frozen, and the world was frozen with her for a second.  And then her mom started screaming.  Hope wasn’t sure what she expected, but that scream finally told her what the look on her mother’s face was, and it made no sense.   She couldn’t tell what her mother was actually saying, but the tone told her she was afraid.  Her mom was afraid of her.  Not worried about her, not concerned, not freaked out even, just afraid.  She’d known her mom would react even to this selfishly, but she couldn’t figure out why she would be afraid.

Hope was still frozen there, still hyperventilating, still unable to move or say anything but she was able to think a little, and register just enough of her surroundings to realize her hands were raised, and one of them still had the razor blade in it.   So that’s why her mom was afraid.  She tried to put it down and couldn’t.  The more her mom screamed the harder it was to think about anything but just trying to breathe, and soon the world disappeared.

Hope didn’t think she’d actually blacked out, but she didn’t remember moving.  She wasn’t sure where her mom had gone, or how long it had been since she’d walked in on her.  She found herself cowering in the corner of the tub, and she had bled all over the bathroom rug.  She thought about trying to start cleaning up, but she still couldn’t move.   She wasn’t sure there was any point, anyway.  Her life was over.  The more she thought about that look on her mom’s face the more sure she was that things had gotten abruptly worse, and would never get better.   If she could have moved right then she probably would have slit her wrists, but she couldn’t.  She had calmed down, she was breathing normally, but something had broken inside of her, and she was incapable of making the decision to move.

Hope had no idea how long she’d been curled up there before her mom finally returned.   Mom had her camera, of course.  Hope couldn’t even ask her to stop taking pictures.  She just sat there and watched her world crumble around her.   Everyone would know, now.  And her mom was still afraid.  She could see it lurking in her angry eyes.  Hope could tell she was no longer just broken in her mother’s eyes, Hope was evil, now.  There was no longer any veil, however thin, between this autism her mom was at war with and herself.  Hope had become the monster.

The next few months were a blur.  There were ambulances and police and social workers and psychiatrists and doctors and medications, and Hope didn’t care about any of them.  She was gone.   Locked somewhere behind the eyes everyone was always so keen on being able to see into.  She let them look all they wanted, now.   Maybe someone would find her.


Mary had known Hope’s mom for a long time.  They had gone to the same elementary school, and lived fairly close to each other, so Mary used to run into Hope and her mom on the playground when she took her nephew, Jack, there to play.   Mary was a teacher, and had worked with autistic kids for a few years.  Jack was autistic, too, and she had done a lot of research on it, both for work and for her sister’s benefit.  The first time she met Hope she knew something was off, but she didn’t want to be rude, so she didn’t say anything.  Eventually she did ask Hope’s mom if she had gotten her evaluated, but she was distracted at the time and Mary decided it was best to back off.

A few years passed by and Hope ended up in the same kindergarten class as Jack.  Mary got to talking with her mom at a school event one day and found out she had received an autism diagnosis the year before.  They exchanged email addresses and Mary had sent her some information, but they hadn’t really talked after that.  Mary figured she was overloaded and backed off again.

As the kids grew older, social networking and blogging became all the rage, and Hope’s mom started writing about her life.   Mary had been connected with the local autism network for years.   It’s a small community, and one day Mary saw a blog entry with Hope’s face on it.  Her mom was blogging under a pseudonym, and calling her daughter Sue.  Hope was adorable, and always had been.  It turned out her mother was a pretty good photographer, and that’s what drew Mary in at first.   She started reading some of the blog entries, and soon felt connected to Hope’s family in a way she hadn’t been able to manage before.  After a while she tried reaching out via email again, and Hope’s mom was much more receptive this time around.

They became fast friends.   She seemed desperate for a way to help her daughter, so Mary shared some of the links she rounded up a few years back for her sister.   Her sister had never been particularly interested in them, but Mary had talked to other parents who swore that some of the treatments had saved their children, and she wanted Hope to have every chance she could. She was a pretty odd kid, but she was beautiful, and she seemed to be fairly bright underneath it all, perhaps one of the new diets would work for her and she’d be able to come out of her shell.

As the years went on, Mary started to distance herself from them a bit, though.  Hope was doing so much better, but her mom just kept getting more and more angry.   Mary kept up with the blog for a while, but stopped visiting and emailing.  Eventually she got sick of the anger and stopped reading the blog.

When she picked up the newspaper that day her heart sank, and she felt guilty.  Hope was on the front page.  The once beautiful girl was laying in a hospital bed with dazed eyes.  The article said she had tried to kill her mother a few months ago, and had been in and out of treatment facilities ever since.  Her mother was now fighting for services that her insurance just didn’t want to pay.  Mary’s twinge of guilt was for not keeping in touch.  Here her friend had been facing this horrific ordeal, fighting for months, and Mary hadn’t even known.  She had never understood why there was so much anger, but there must have been a lot more going on behind the scenes.   Mary should have been more understanding.  She should have kept in touch.  Maybe she could have done something to help.

She sent flowers to their home, and spent the next couple of days trying to catch up on the blog entries she’d missed over the years.  They painted a bleak picture, indeed.   All that suffering, and Mary had been indifferent.  Hope was just a cute face to her, with some oddities.   She had never realized how hard it must have been to raise her.

Over the next few months she made sure to keep in touch with Hope’s mom, and offered help whenever she could.   She even helped with paperwork and petitioning the insurance companies.   Since she had worked in the school system, she helped Hope’s mom navigate the bureaucracy there, and get the helps in place that they’d need so that Hope could go back to school when she came home.

They had both changed, Hope and her mom, but it was understandable after such an ordeal.   The news article had stirred up a lot more attention than they were used to, and internet trolls had come pouring out of the woodwork.   Most blog readers were fellow parents, and they understood how hard it was.  But some of these new people were just crazy.   They started attacking Hope’s mom, as if she had been the one doing something wrong.   As if it was somehow her fault her daughter had tried to kill her with a razor blade.  Mary couldn’t understand it.   Did people have no compassion?   Couldn’t they see this family was hurting?


Everything had fallen apart. She couldn’t even stand to look at her blog anymore.   She’d been at war with autism for years on end… it had finally tried to strike a fatal blow, and everyone thought she was over-reacting.   Her own daughter had tried to kill her.  She had photos to prove it.   But ever since her story went national people had been attacking her for no reason, as if it was all her fault.

She still had friends.  Most of her blog readers had gathered around her, a lot more people than she realized were on her side, but it didn’t seem to matter.  There were whole organizations that aligned against her and started harassing her every time she posted anything.   They called themselves autistic, as if truly autistic people have the ability to communicate that well.  The whole situation was ridiculous, but that didn’t slow the onslaught.  Before long she was weary of the fight and all the fun was gone from blogging.  She still posted, just to keep her loyal readers updated, but she didn’t even bother to read the comments anymore.   She set it up so a friend could monitor the comments — Mary just deleted all of the attacks so she wouldn’t have to see them.

Hope was gone.  She barely even communicated anymore, and when she did it was usually to lash out.  They had to keep her medicated, and even under sedation she had caught her trying to to steal a knife out of the kitchen in the middle of the night.  Hope had lunged at her and tried to kill her a second time.  Autism had won, at least in this family, and there wasn’t much point in fighting anymore.  She should have tried the treatments earlier, but she was young and stupid and had no idea what she was setting herself up for by ignoring the truth for so long.

It was clear that her life was never going to be anything but fighting doctors and insurance companies and her own daughter just to survive.   Every time they decided to send Hope home she had a panic attack just thinking about it.  One of these nights her own daughter was going to stab her in her sleep, and there was nothing she could do about it.  Perhaps she really should have refused the leech, all those years ago, when she wanted to nurse.   She had no idea what to do, now.


As it turned out, hell on earth did have an ending, and Hope was glad to see it coming.  She would rather be anywhere else, doing anything else, but there was no life for her anyway.  Not now.  Not broken like this.  She could only hope that God wasn’t duped by her mother’s story, the way so many others had been.  He should understand, right?   She couldn’t tell her side of things.  She had tried, but the words wouldn’t come out.  She had managed a few words a time or two, but the people she was trying to talk to had gotten frustrated and walked away before she could get her story out.  After a while she stopped trying.  But she shouldn’t have to try with God, right?  She hoped so, anyway.

She didn’t know where He’d been all this time, He sure hadn’t seemed to be protecting her.  Her mom had taken her to church for a while when she was younger.  The teacher there said that Jesus would be her friend if she asked Him to be, and she had really needed a friend.   She had said the prayer the woman taught her, and meant it.  She had been talking to Him ever since, in her mind, wher she could use pictures when the words wouldn’t come, and sometimes He seemed to answer.   She didn’t know why He never stepped in to help, but she hoped He’d be waiting for her when she got to the other side.

This had been a really bad day, in a string of really bad days, and weeks, and months.   They had sent her home, again. She hadn’t know whether she wanted to be home or not.

Home meant having to see the hatred and fear in her mom’s eyes again, but at least there were no restraints.   It hurt that her mom was afraid of her, but at least she usually left her alone.  The shrinks always wanted her to talk, bugged her endlessly about it, then interrupted her as soon as she managed to get a word or two out, to tell her that she’d never get better if she refused to communicate.  Most of the other patients in those places were just as broken as she was, and some of them made noises worse than the neighbor’s old lawn mower.   She couldn’t escape, and they weren’t about to let her near a knife, so she had to find other ways to deal with it, no matter how bad they looked, and that usually meant crouching in a corner and banging her head on the wall.   This, of course, was seen as proof of further regression.  They had tried to teach her other ways of coping, but they were all useless.

The last time they sent her home she had made a huge mistake.  She had thought that perhaps, if she could find a knife, she could keep it hidden and the pain would allow her to gain some control and find herself again.   Everyone kept trying to tell her that cutting was dangerous and pointless, but they were wrong.   She had done it for a long time, and it had been working.  If her mother hadn’t barged in on her that day, everything would be fine.   She’d have been close to graduating high school and escaping her mother altogether by now.   Instead she was broken.   Broken beyond repair, probably, but maybe, just maybe, she could fix it if she could gain control again.

Something in the back of her mind kept telling her that the cutting really was damaging, but even if it was, it was only damaging her mind, and that was broken already.   She figured she had nothing to lose at this point, so after thinking around in circles on it for quite a while, she decided to try to find a knife one night.  She had tried to be quiet, she had gotten to the kitchen, found one, and was running back to her room with it when her Mom heard a noise and came out to see what was going on.  Hope ran right into her.  Seriously.   The universe had a sense of humor, and Hope was the butt of the joke.

Of course, her mom freaked out once again and told everyone she’d run at her, with a knife, in the middle of the night.  With a story like that, Hope had never expected to to see her home again, but apparently there was some mix-up with insurance or something, and here she was.

More precisely, she was laying in the middle of the living room rug, which was slowly turning red.  She could see the puddle growing in the mirror on the wall, and she knew it wouldn’t be long.  Her mother was on the phone in the next room, saying something hysterical to a 911 operator.   Hope decided she didn’t want her last minutes full of her mother’s lies, so she was attempting to block out the sound.

Hope was still trying to make sense of the day, anyway.   Mom had gone around in a daze for days after she had gotten home, mumbling about how her life was ruined yet again, how she just couldn’t handle this again.  She had spent every evening drinking wine and crying on Mary’s shoulder while Hope did her best to just stay out of the way.

But then this morning came and Mom was back to normal.   Back to how she used to be before the fear showed up in her eyes.  The hatred was still there, but it didn’t seem as strong somehow.   She took Hope out for supper at her favorite restaurant, and even let her get dessert.   She hadn’t even lost her temper when an ambulance went by on the car ride home, and the noise made Hope rock in her seat.

When they got home Mom said she had a surprise for her, and pulled out Hope’s old pocket knife.  Her mom was saying something as she handed it over, but Hope was so dumbfounded she didn’t hear it the first time.  After a minute or two she regained enough composure to ask her Mom what she’d said.  “Maybe you needed this after all,” she said.   Then she gave Hope a hug, and walked away.  Hope was still standing there in shock a few minutes later, opening and closing the familiar blade; enjoying the feel; wondering why Mom had suddenly changed so much; wondering what the catch was.

And then Mom walked back in, holding a gun Hope had never seen before.   Pointing it straight at her.  Wearing the biggest smile Hope had ever seen on her.   The last thing she heard before the explosion was “I win”.

Hope was still perplexed, but she knew one thing.  Mom did not win this war.  There was no war, because Hope stopped fighting a long time ago, and if anyone was winning here, it was Hope.  Her hell on earth was over.  She knew she wouldn’t survive this.  She could feel herself slipping away.   She had a peace she’d never felt before, and she knew who was waiting on the other side.   It was time to go home.


Mary couldn’t believe the news the next day.  Hope’s mom had planned such a special day for her, it had seemed to go so well… but that didn’t keep Hope from trying to kill her anyway.  She had nearly succeeded this time, and her mother had been forced to protect herself.  The community had lost a child, and nearly lost one of it’s best warriors, and she had nearly lost a good friend.  All because the system had ailed, and sent Hope home when they knew it wasn’t safe.


Hope’s mother, now free to travel, started giving speeches across the country, campaigning for more services and raising funds for a cure.   She had won the battle in her own home, and she would win this war eventually.

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Filed under Deep Stuff, Disability, Stories

Sometimes ♫ I Don’t Wanna Sing

Depression can be like a deep, dark, hole in your soul.  When you’re in that place, sometimes it feels like you will never get out.  Not because the hole is too big to climb out of, but because the hole is you.  At least for me, despair rarely feels like something that’s happening to me, caused by something outside affecting me.  It feels like it is part of me, a fundamental part, at the core of who I am… and it will never change, and there’s no point in trying to escape it, because it’s where I belong.

When I look back I see
The person that I was
Staring back at me.
Same confusion,
Same despair.
I become the she that I was there.
Caught in the moment,
Panicking, still.
No escape.
No free will.

If you’ve never been depressed, or if your fundamental years were free of depression, you may well have no clue what I meant by that.  If you’ve been depressed for very long, and especially if you were depressed as a child, as I was, you probably know exactly what I’m talking about.

If you are in that place, please know that it is not you.  No matter how much a part of your life it seems, you can come out of it without giving up who you are, regardless of its cause.

But you will probably need help to come out of it.  Psychologists and well meaning friends and loved ones can help sometimes, for some people, but that often falls far short, and sometimes makes things worse.  Sometimes the best solution is the one that seems the most desperate, so we never even consider it.  Sometimes, you have to look up.

I spent over a decade in that place, resigned to always being there.  I spent nearly another decade trying, and mostly failing, to claw my way out, with the help of a really great friend, who kept trying to convince me that it wasn’t part of me.   I never believed him, but I was trying anyway, for his sake.  I was also working on my spiritual walk, drawing closer to God every day, and one day God just picked me up and pulled me out of that pit.

And suddenly that deep darkness was gone, but I was not.  I was left reeling, almost in shock over the sudden change.  It took me quite a while to adjust to the change, the sudden loss of such a huge part of my life.  I was happy, don’t get me wrong, it was a relief I don’t think many people can relate to, but it had been part of my life for so long, part of my self-identity, and I had had no idea that it was something other than me, that whole time.  Something riding on my shoulder, pushing me down.  I was intact, I was whole, and it was not a part of me after all.

But sometimes
When I look up I see
The person that I could,
Maybe, someday be.
No delusion,
No more fear.
Possessed of a mind that’s free and clear.
In those moments,
Hope abounds.
And all is great,
And I am found.

(The poem quoted here is titled “Sometimes” by me – Tammy Bowles.  I don’t mind if you share it but please give the reference.)

I don’t think anything anyone said could ever have convinced me of that fact.  If you’re in that place right now you probably think I’m crazy for believing I was healed, or maybe you just think it’s well and good for me, but your case is hopeless.  I understand.  I truly do.  But please give God a chance.  Ask Him to help, and then let Him (He’s a gentleman, He won’t take the reigns from you, you have to hand them over).

If any of this seems a little too esoteric, I apologize.  I am still a little uncomfortable sharing at this level in the open, but if you would like to talk about this stuff in more detail please feel free to contact me.

I’m not saying that I never see that dark place anymore.  God pulled me out, and I no longer live there, but there are times that I find myself looking back in.  Hormone spikes can send me in that direction.  I found out a few months ago that the wrong medication could send me back there as well.  It always feels so familiar that it takes me a little while to figure out what has happened.

In the midst of that last medication-induced bout of depression God gave me a couple of lines and told me to write the rest of this song, because I needed to hear the ending.  It’s a funny thing to be told to write what you need to hear, but it worked out in the end.

I shared this song on my Facebook page a while back, and have sung it at church a few times.  I was going to wait to share it here until I got some music and a better recording, but something tells me I need to share it now…  Perhaps someone out there needs to hear the ending as well.





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Filed under Deep Stuff, Music & Songs, Personal

Meds suck, some more than others.

I hate relying on medications, but my life seems to revolve around them these days, well, for the past 15 years, really. Without meds I’m pretty useless, and in excruciating pain besides.

In any case, I’m not entirely sure if I’ve posted about the med situation on my blog or not, so I’ll give a quick recap (lol, it turned into a book of a post, sorry).   I’ve been so out of sorts I don’t even have a good idea of time frames… so I’m not even going to try.

A few months back I suddenly developed an allergy to the muscle relaxant I’ve been taking for at least 15 years.  I had upped the dose a few weeks before that, so I’m guessing I hit some sort of threshold and my body just said “no more”.  It took several weeks to pin down what exactly I was having a reaction to, though, since I hadn’t really changed much and no one believed it could really be a med I’d been on for that long.

Panic ensued, because I feel completely dependent on meds at this point, and I was already in danger of losing the NSAID (my heart had been acting up) which keeps the entrapments in my arms down enough that I can use my hands, and I’ve been having trouble with the anti-convulsant I rely on for many of the nerve issues, because it’s caused some un-diagnosable problem with my hydration levels (that’s a whole other story).  I had already been through every muscle relaxant several neurologists had thought to try, and a call to my current neurologist told me, simply and matter-of-factly, that I was completely out of options.

So I spent a few weeks completely panicking (I’m not proud), and desperately trying to find a way to get the allergic reaction under control without having to abandon the muscle relaxant completely.  I had gotten a new NSAID perscription just before this all started, but I was afraid to switch for fear of complicating things… so I put that off.

My neurologist wanted nothing to do with sorting out the allergic reaction, even though it was clearly because of meds he’d prescribed (though he wasn’t willing to accept that fact).   So I had to go to my GP (and my GP had recently moved, so I had to go to whoever was randomly available at her old office)… the various nurse practitioners there couldn’t agree on treatment approach and were arguing with each other.  At some point they had me cut back to half dosage on the muscle relaxant and gave me an Rx for steroids to try to break the reaction.

I was also seeing a new specialist that week about the hydration issues, and ended up in his office, for the first time, itching like crazy, begging his people to find me an ice pack to quench the burning fire in my face, caused by the steroids they’d put me on, and not at all patient enough to deal with his arrogance.   I still haven’t figured out why my completely reasonable indignation at being straight-up called a liar — presumably because I couldn’t remember precise blood pressure readings from a couple of random doctor visits months back, of all things — caused HIM to feel offended.   But, given that he is good friends with my neurologist, that only served to make the muscle relaxant situation even more difficult to deal with….

My normally polite, reasonable, and helpful neurologist turned into a pompous jerk, and when my GP insisted that I follow up with him, because he was the prescribing physician for the muscle relaxant and my other meds, and they didn’t want to mess with what a neurologist was prescribing, he had the gall to tell me that he “wished he could be a gp, but he just wasn’t”.

In any case, at some point one of the gp people found a muscle relaxant I’d never tried before and decided to try to switch me to it. At first, it seemed like it might be working.   My arms were achy, but they tended to be achy anyway. Whenever the dose wore off it felt like a giant was trying to tear me limb from limb, every single joint hurt like it was being pulled apart!   But, if I could get the dosage right and learn to take it on time that wouldn’t be a huge issue, right?  And I was out of options, this was the only muscle relaxant I hadn’t taken yet, so I tried and tried and tried to find a way to remember the doses on time, but I am really BAD at taking doses on time, and this one needed to be taken 4 times a day.  I don’t have anything with 4 alarms, and I don’t have money to buy anything.

I was panicking more and more this whole time, btw.  If I forget my muscle relaxant for more than a couple of doses I wake up with pulled muscles. Going without one is not an option anymore. I saw this med, as bad as it was, as the only lifeline left.  So I kept trying to force it to work, when hindsight tells me there’s no way it would have worked. The aching in my arms was getting worse, and my hands were starting to atrophy.  But the biggest problem was one I didn’t even realize was happening, and that was that the med itself was causing massive depression and anxiety.   I didn’t realize it because I tend toward depression anyway, and the situation was so stressful it seemed warranted.

I finally made the connection shortly after a call with my neurologist, in which I desperately pleaded for some advice, and he was a total arrogant jerk (this is not typical of my interactions with him for the several years previous, so I assume it has something to do with having recently ‘heard about me’ from his idiotic endocrinologist friend).   The fact that I started bawling at one point should have tipped him off to the problem but he was too pompous to pay enough attention to realize what was happening.   Thankfully, with the help of my best friend, we put two and two together not long after that and made the connection.  I was devastated but knew I couldn’t keep going on that med, so tried going back to the old one, on a low dose.

Cue allergic reaction all over again, but with the arm pain back to a reasonable level and the giant-is-trying-to-rip-me-apart pain gone, and the black cloud of chemically induced complete and utter dispair lifted, my ability to reason started to return, and things didn’t look as scary as they had.  At this point I was certain the allergic reaction was caused by the muscle relaxant, so I decided to go ahead and try out the new NSAID I’d been prescribed.   Much to my surprise, it is awesome!!  I have recognized no side-effects, it’s 24 hours so I only have to remember to take it once (and my right arm gives me a loud and clear reminder to take it if it wears off).  All of the angina I was having with the high dose ibuprofen has disappeared, the TMJ pain in my jaw all but disappeared, and my arms are more useful than they’ve been since the entrapment started back in 2005.

Fred helped me research muscle relaxants again, and when I finally got in to see the neurologist I took a list of 4 that I didn’t remember having tried before. He ruled out 2 immediately… one was dangerous with my neuropathy and the other was one he refuses to prescribe to anyone, and I didn’t want to have anything to do with anyway. The third he could only find as an injection and he didn’t want to mess with it, and the fourth was one he’d never prescribed before. We decided to try it.

(He took the time at this appointment, now that I was no longer suffering from severe med-induced depression, as I had been on our previous phone call, to tell me that he was trained in dealing with depression, that I had seemed depressed recently, and if I ever needed someone to talk to I should come to him.  I am very proud of my ability to hold my temper at that point… since I had tried to reach out to him for help when I had been in that state, and he obviously was the last person I should have tried to talk to, given the arrogant and pompous way he had responded to me in my distress.)

So I started the new med. It didn’t “feel” like it was doing a very good job.   My muscles still felt rather tense, but they weren’t cramping all the time or pulling in my sleep, so that was good enough for me to try it for a while.  The only side effect I noticed immediately is that I was hungry.   No, starving.   All. the. time.

Despite my size, I don’t usually eat much.   I just have a really sucky metabolism.   I found a while back that if I don’t eat meals, and just snack a little at a time, it helps my metabolism enough to lose a little weight, so I have been in the habit of just eating healthy snacks for a while now, and not many full meals.  But this new muscle relaxant demands meals.  Huge meals.  And snacks.  I was afraid I’d gain a lot of weight but after a couple of months I seem to be holding at about 5 lbs over where I was, so apparently it’s kicking up my metabolism even as it demands more food… doesn’t help the food budget, unfortunately.

But I can live with hunger.  As annoying as it is to be hungry most of the time I’d much rather that then the alternative.  I also found recently that there was supposed to have been a notice on the med instructions that you’re *supposed* to take it with a full meal, because it has as much as a 70% higher absorption rate when taken on a full stomach.   So I’ve started experimenting with always taking it with a meal and it now feels like it’s doing a better job at the actual muscle relaxing.  I was taking a very small dose of the old muscle relaxant every couple of weeks to try to force my muscles to relax when they got too tense, but I haven’t had to do that now in a little while.

I’ve been on the med a while now, and it has a few other ‘side effects’ that I’m starting to realize. I’m not sure whether these are results of the med, or results of being off of the old muscle relaxant… and I’m trying to belay getting excited because I haven’t been on it long enough to know if these things are permanent or not (since my condition tends to wax and wane and relapse, and I could just be having a really good couple of months)… but here’s what I’ve been seeing…

I can wake up like a normal person.  No startling or shaking or whimpering or crying or screaming most days.   No freaking out my little summer guests when they try to wake me up in the morning.   In fact, several of the kids mentioned the difference this year compared to last year.   Also?  I wake up after about 8 hours, and most days I can stay up for the whole day.  I may sleep a day or two here and there, but I’m not averaging 10-12 hours a night these days, and I feel more awake most of the time.

My muscles are getting stronger.  I can feel my arms returning to normal.  Not just normal for me, but strong, like they used to be before the entrapments started.  They still shut down on me if I use them much, but the atrophy that had started on the bad med is completely gone and they’ve gained strength beyond where they were before that.  My calves are getting stronger as well.  I expected that, as they always go into hypertrophy when I don’t have a proper muscle relaxant, but this doesn’t just feel like hypertrophy, they feel like they’re responding to my nerves better, and my footing and balance feels stronger.  This, of course, could just be fleeting or caused by a good few months with my neuropathy, I don’t know if it has much if anything to do with the new meds, but I’ll take it anyway.

I bounce-back faster.  This one is huge, and I think it’s definitely a response to the med change.  My neuropathy has always had a pattern… I use a muscle too much, my nerves go on strike and shut down on me.  They’ll get really sore and the muscle will start shaking and eventually I just won’t be able to use that muscle anymore, or I’ll have very limited ability to make it tense and hold.  I reach this point suddenly, so I usually don’t know I’m overdoing it until it’s too late.  When this happens I have no option but to stop whatever it was I was trying to do.  Usually for the rest of the day that muscle, or set of muscles, is useless, the next day it’ll be sore but usable, and the day after that it will be completely useless again, depending on how badly I overdid it that may last just a day or several more days.   I’ve lived with this pattern since I was about 10.

But that pattern is gone.  The past few times I’ve overdone it, my nerve has shut down like normal, all the same signs, etc.  But in an hour or two, maybe a little longer if I really overdid it, it’s back to being strong again.  The next day it’s fine.  The day after that it may be really sore, but it’s been usable.  I’m almost in shock over this.  It’s great, but I don’t know what to think.  Is this a new pattern?!  Can I rely on this?  If so, my disability just lessened significantly.  I feel like I’m waiting on the other shoe to drop, to find out this was just a fluke, but it’s been a while now, and the new pattern seems consistent so far.  I’m sure there will be limits on it, I imagine that at some point in overdoing it I’ll push too far and break over to the old pattern, but for now I’m really excited.

There are two bad things I’m dealing with right now besides the hunger.  The first one I’m pretty sure is caused by the new muscle relaxant, and that is headaches.  Lots and lots of headaches.  And migraines.  I’m hoping there’s a pattern that will let me do something to avoid them, but I haven’t found it yet.  I’ve just been eating Tylenol a lot more regularly than I’ve ever had to in the past.

The other one, and I’m not entirely sure it’s related to the meds, as there was some evidence of it before I switched, but it seems like the new meds have exacerbated it greatly… when I get tired, my attentive memory all but disappears.  I can drive safely, but I become a total airhead and forget how to get where I’m going.  I lose the ability to count because every little distraction makes me forget what number I was on.  I can’t remember names, I can’t keep my focus on anything, etc.  It’s very disturbing and a little confusing… I took an online IQ test while in the middle of one of these episodes and my IQ was only slightly lower than the last time I took that test, so I know it’s not affecting my mind as a whole, but it certainly affects my ability to function in day to day type stuff.  I was pushing hard for a few weeks and I just kept getting stupider and stupider until I got the time to rest up.  I’ll have to be more careful about planning rest time in the future, I guess.

In any case, the hydration issue isn’t cleared up, and probably never will be (short of Divine healing), but despite the issues, the current batch of meds seems to be a huge improvement of where I was before the allergic reaction started.  I will do my best to remember this entire ordeal as an object lesson on patience… that God knows what he’s doing, and He can bring me through to a better place even when it seems like the bottom is falling out of everything.

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Aliens Among Us

I love the sci-fi genre.  Not only is it entertaining in the same way as other literature (or eye-candy), but science fiction pieces almost always incorporate the exploration of new concepts and topics, deep philosophical questions, and a cautionary look at what can happen if that information, or those concepts are used for nefarious purposes.

Unfortunately, our societies seem to find it impossible to heed these warnings (or learn from history, even) and we tend to make the same mistakes over and over and over.  In fact, people in high places seem to quite regularly misread the cautionary tales as challenges, and dive head-first into the very mistakes the authors were trying to warn us against. (If you question my assertion here, I challenge you to go back and re-read Aldous Huxley’s “Brave New World” and consider where society is right now compared to where it was when he wrote the book.)

In any case, aliens come up quite frequently in science fiction works, for various reasons.  Their presence provides the opportunity for an author to share his view on the universe at large, to weigh in on the age-old debate about whether life exists elsewhere, and/or to show off his creative abilities and conceptual talents.  Many times they also give the author an excuse for showing off his scientific knowledge or pseudo-scientific knowledge.

On a deeper level, alien societies are a very convenient tool in the arsenal of a genre which has such a rich history of exploring politics, philosophy and theology.   They provide the opportunity for the author to pull the reader completely out of their comfort zones, away from their political or religious views, and into an entirely different world, where concepts can be discussed in the relative absence of per-conceived notions.  Introducing a human character into an alien world, for instance, allows the author to explore the wrongs of society without having to step on the feet of any particular society, group or nation; while introducing an alien into human society allows her to explore humanity from an outsider’s view, again without directly stepping on any toes.

It is the deeper level that draws me into science fiction novels so much. While the actual implementation of an alien story, especially when Hollywood gets involved, can be superficial, annoying, or cheesy, the underlying principles and politics can be quite fascinating. This is doubly true for me, I suppose, because I’ve always felt rather like an alien being raised in a place I do not belong, so the issues the main character is dealing with may seem very familiar to me, or at least parallel some of my own experiences.

That last sentence is sure to raise the hackles of some in the advocacy communities, and I apologize for that. No one’s ever supposed to say that they feel anything other than human, but I pride myself on being honest and that’s precisely how I’ve felt for most of my life. I have never really belonged anywhere, at least for very long. I very rarely understand why others act the ways they do, and the motivations behind my own actions are very seldom what others expect they should be. This leads to quite frequent misunderstandings in my personal relationships, some of which have cut to the very core of my being and left scars I’m not sure will ever heal. I’ve felt like something other, broken, out of sorts, and unreal for as long as I can remember.

So even as a child, I identified with Pinnocchio’s desire to be a real boy (though I found his propensity to lie perplexing at best). I watched Star Trek TNG in awe at finally seeing a character I could identify with: Data. I am fascinated by 7 of 9’s slow transformation from borg back into the human society of the Star Trek Voyager crew.

Historical novels, romances, and much of the more standard fiction that others love so much rarely have characters that I can identify with. But even when I don’t directly relate to the characters in a science fiction novel, the themes generally contain things that are interesting and even useful to my every day life. Many of the standard “things everyone is just supposed to know and understand” get boiled down and explained in minute detail when an alien commits a social faux pas. Body language that would just be mentioned in passing in most novels, with the expectation that the reader understand the implications, often gets pointed out and explained in detail when an alien misses it. Even when the social foibles are just introduced as comic relief, the fact that they’re in the spotlight helps to explain them.

I wish I had read more science fiction when I was young, but I didn’t really discover it until I was an adult. I watched a lot of sci-fi on tv, but I think all of the dragons and swords of fantasy thrown into the scifi section in the bookstores scared me off.

I’m trying to read more these days. I did read a lot growing up, but I seem to have done a very bad job at my selections (I missed a lot of classics, as well). Do you have any reading suggestions with interesting characters thrown into worlds they don’t understand?

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Advocacy and Inadequacy – Part 3

This is part 3 in of a series that I’ll hopefully be able to finish today (yep, that did not happen, started it a long time ago and just couldn’t manage… sorry for the delay.)   The first two posts were basically just backstory for this one.  In Part 1 I explained some of my history growing up disabled, and the encounters I had had with disabled communities back then.  In Part 2 I explained my current predicament — how annoying my disability,  and the conversations that it evokes, can be out in public on a daily basis — and how that situation makes me a rather bad fit for vis-a-vis advocacy work.

The community that I am in now is, honestly, in dire need of more advocacy work, but I just do not have the mental energy or the strength for that right now.  Many here think I’m robbing them blind for receiving social security disability in the first place, the absolute last thing I want is to have to confront them in a public venue.

But I have slowly been making more and more disabled friends online lately, many of them are very involved in disability rights and advocacy, and I’ve been wondering more and more if perhaps I shouldn’t be more involved, myself.  It’s possible that I could manage it online, but I’m not sure.  The thing is, I feel completely inadequate.  And that seems rather silly, considering the fact that I’ve been dealing with a physical disability since I was 8 years old.  But this disability I have is nonstandard, in a rather infuriating way.

There are three basic types of disabilities: static disabilities, acquired through illness or injury; genetic defects or inherited disorders that are non-progressive; and progressive disabilities, which can be acquired or genetic.  Each of these groups faces a different set of issues and challenges, and our life experiences can be vastly different because of them.

For the most part, the first group lived some length of ‘normal’ life before being thrust into the world of disabilities by a freak accident or illness of some sort.  Generally they sustain their injury, have to adjust to a new life that includes and accounts for that injury, and then go on with life.  There is nothing small about having to deal with a life altering injury or illness.  The pain is sometimes enormous (and often continues long-term), there is often PTSD to deal with, recovery can be arduous and seem impossible, learning to become dependent on others, on meds and/or equipment can be seem near impossible, and the shock of losing what you once had is enormous.

But those who are born with disabilities do not face this same experience.  Those born with non-progressive disabilities have a whole other set of issues.  The view these people have of their disability is often shaped almost entirely by the way in which they were raised.

Raised in a home where they were treated like anyone else, encouraged to get involved, with adults and community members on their side — to advocate for accommodations they needed — many of these people do not even consider themselves disabled, except by the attitudes and obstacles put in their path by society at large.  Maybe they were born blind, deaf, with deformities, maybe they require a wheelchair or an alternate communication device… whatever made them different only made them different, not disabled.  These people often live up to their potential in ways that other disabled people can only dream of… and unfortunately it leads some to declare that disability is only a frame of mind, which sounds great, unless you’re a disabled person who’s truly struggling.  (Some of them, once they leave the bubble of this rather sheltered and positive upbringing, may become seemingly constantly angry against society at large, as they find themselves confronted over and over with disabling obstacles.)

Being raised in a different sort of home can lead to a completely different view of one’s disability.  Some children born with disabilities learn from an early age that they are sub-human, either because people around them are telling them that, or because the way they are treated implies that.  Bullying often starts in the home.  (Many older generations were shipped off to group homes or hospitals and didn’t even have the benefit of being raised in a home… this still happens,  but not nearly as often.)  Even when the home is fine, though, if the adults in their lives aren’t supportive in the right ways, they may face relentless bullying and obstacles throughout their young lives.  If it doesn’t break them, they will learn coping mechanisms, though, and eventually come to a place where they’ve learned how to compensate for their disabilities enough to get through their day to day life at whatever level they can manage, with whatever supports they are able to procure.

The third group ends up with the issues compounded from both of the other groups.  Those of us born with a progressive genetic disorder, or those who have acquired a progressive disability, often make it through part of our lives seemingly normal, or with minimal issues, then at some point the world starts falling apart, and never stops.

I imagine the process is a little easier on those who make it to adulthood before they start declining.  Barring a tumultuous upbringing for other reasons, they’ve probably formed a solid self-identity, gotten through the torment of the teenage years, and had normal relationships along the way.  They’ve got a house built on solid ground, so to speak, that can probably better withstand the storms that the disability will bring.

For those of us who got hit as children, though, it can be a very rough row to hoe.  A child’s body is constantly growing and changing.  Children are constantly learning and discovering new things they can do, and most people recall their childhoods with a sense of wonder and excitement for this reason.  For a child with a progressive disability, though, the constant changes and new discoveries can bring a sense of dread.

Where most childhoods follow a pattern of slowly learning more and more independence, a childhood with a progressive disability is a hodge-podge of starts and stops.  You learn how to walk, then you get to figure out how to deal with not being able to walk, or not as much.  You learn how to do cartwheels and then one day you learn how to cope with the sudden realization that you will never be able to do another cartwheel.  You get really good at a sport, but all that use of your nerves starts to harm them so you have to say goodbye to it forever.   You learn to tie your shoes, and then you learn how to still tie your shoes with hands that don’t move the right way, and then you maybe learn how to let someone else tie your shoes for you, or how to find supportive shoes that don’t have to be tied.  You learn to button your clothes, and then you learn how to alter your wardrobe, because you never ever want to get stuck again in a pair of pants you can’t get out of.

You learn to be fiercely independent, and take care of yourself, until you do too much and get stuck somewhere, unable to move, praying that someone will find you before it gets dark, and that you’ll be able to live through the humiliation.

These may all seem like little things, especially to someone who has dealt with a far more disabling condition, but it’s not so much the individual things themselves but the constant pattern of losing what you work so hard to gain.  Children tend to be very proud of their accomplishments… when they work hard and something doesn’t work it hurts them a great deal.  Just think of your own childhood and I’m sure you’ll remember at least a time or two where you were very proud of something, went to brag to your favorite adult, and got shot down.  I’d venture to guess it still stings.  The hurt of losing independence one has worked hard to gain is much more jarring, and lasts much longer.

Besides, the little things can actually be harder to deal with than the big ones, at least for me.  When my hands atrophied in college it was a huge deal.  It was obvious, visible, all you had to do was look at my hands and you could see something was wrong.  People offered help when I needed it, doctors took notice, no one looked at me funny when I shook their hand limply, because they could tell it was my only option.  I accepted help because it was obviously my own choice in some situations.  When I needed a different type of door handle installed on my dorm room no one argued about it, they just installed it for me.   I didn’t have to fret about whether to try to fill out my own forms ad doctor’s offices and such, because it wasn’t even an option.

But my condition is particularly bizarre, in that my nerves manage to heal themselves partially, from time to time, and after a few years of not overusing my hands they actually gained back some function and the muscles recovered.  They look normal now, and much of the function I lost has returned.  *I* know that I can’t use them much, or they will return to the state they were in before (and on bad days they shut down just the same or worse than they were) but no one can look at me and tell that.  They see normal hands.  If they looked closely they might notice that I can’t really straighten them out completely, that they shake sometimes and with certain motions, that I can’t really squeeze tightly, that if  I make a fist my hand gets stuck there… but no one looks that closely.  They expect me to be able to use them, because it looks like I can use them.  If I ask for help with things now I often get funny looks.  Even when I don’t get the funny looks, I feel funny asking for the help.

While having my hands atrophy and shut down was more disabling when it came to day to day tasks, it was not as frustrating for me in my interpersonal relationships as it is to have partial/intermittent use, and my pride was much less an issue.  And I’ve finally come to the point I was wanting to speak to with this entire series of blog posts.

I do not feel up to the task of advocacy work.  I feel inadequate.

In my personal life, advocacy is nearly impossible for me.  I may be too helpless to get by with the level of independence I’m used to, but I’m not disabled enough to be comfortable talking about the help I need, or asking for it.  And when help is offered, I find it nearly impossible to accept it.

As far as the community is concerned, I can’t go out and give people a pep talk about living with disability, or overcoming the limitations of a disability — as so many other people do — because I’d feel completely ridiculous.  I think most people, seeing me on my good days, with no easily noticeable issues, would feel the same way.  Despite my very real disability, I would feel like a poser.

I’m that person who parks in a handicapped spot and gets out and walks in somewhere with no trouble.  It infuriates you, because real handicapped people need that spot.  Had you seen me try to walk from further out in the parking lot, you might have gotten to watch me stumble and fall, or perhaps get stuck, unable to walk back to my car.  The only reason I can walk in and back out with no problem is because the distance is so short.  But you don’t know that, you judge me on what you see, and I can’t really fault you for that.

In the world of online advocacy work, perhaps this is all unimportant.  Perhaps I can become more involved.  But I’m not sure that advocacy work can stay online and actually do any good at all.  What do you think?

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To a man I used to respect…

This was a letter I wrote after a particularly bad series of encounters with a person I greatly respected for years.  I wrote it a few months ago and did not have the courage to finish it or post it back then.  I’ve finally finished it, and after much internal debate, have finally decided to publish it.

Dear Sir:

You have no idea what I would give to be “normal”.  To keep a regular schedule.  To work a regular job.  To have a family.  To have all of the regular things that you probably have in your life, that probably bore you to tears.

I used to work normal, monotonous jobs.  I was happy with them.  I never had big aspirations, a simple 9-5 with a livable salary was fine with me.  I babysat, I worked as an envelope stuffer, receptionist, customer support rep, tech support rep, database administrator, programmer, consultant, and did various odd jobs.  I was happy with most of them.  I would be happy with any of them now.  My bosses loved me.  I took less pay than I probably should have for the work I was doing, but I never really cared.

Sometimes it feels like my entire life has been one long string of learning to give up the things that I love.  I was never the couch potato type.  As a child, I loved baseball, basketball, bike riding, crossing monkey bars, jumping rope, swimming, and just about anything else that involved lots of physical activity.  But as my grip got worse I had to give up the monkey bars; as the injuries piled up from falls I had to stop running and jumping,  no more basketball, baseball, gym class; as my legs got weaker stairs became more and more impossible, out went climbing, no more slides, I had to move to a new school with less steps.

As the pain levels rose and nerve function declined I had to start making adaptations to try to hold on to things in my life, in came braces, crutches, canes, wheelchairs.  I had to start counting my steps, weighing every movement to see what was required and what I could sit out.  As my hands got worse I started typing everything I could, I changed my signature to a few initials so I could still sign paperwork on bad days.  When I ran a stoplight, because I couldn’t move my foot to the brake on time, I got hand controls installed on my car.

I’ve spent my entire life trying to find new ways to work around my physical limitations. Every time I lose more function, I struggle until I find a new way to still do the things I want and have to do.  But little by little I’ve had to give up things, because there simply wasn’t another workaround.   Despite all of this loss there have been a few islands of progress thrown in, but they usually come out more like 2 steps forward, 3 steps back.

When I was in college, I finally got my neurologist to help me look into medications that might help.  A muscle relaxant dropped my pain levels so much that I was able to concentrate on my school work again, but he pulled me off of them after a few months, when he saw that the muscles in my calves had dropped significant mass, I was left with serious withdrawal symptoms (I didn’t know what they were at the time, I had no idea the med was addictive).   Also while in college, I discovered lightweight wheelchairs and wheelchair sports.  I was able to get around well for the first time in years, and I was even able to start playing wheelchair basketball.  Unfortunately, so much wheelchair use caused my hands to atrophy.  The withdrawal, combined with my hand issues, combined with the severe fatigue and other symptoms that came with cold weather led to my having to drop out of college altogether.

I eventually found a neurologist that would work with me on meds again and we finally found my miracle drug, which turned out to be Tegretol of all things.  My nerve function increased, and my pain levels dropped lower than they had been in years.  By all appearances things were much better, and I had a few great years.  Until, it seems, the Tegretol caused another disorder that led to frightening disorientation, eye problems, and the need for 2 different surgeries before I kind of figured out part of what was happening and learned some ways to cope.

After I had been away from college for a while, using my wheelchair a lot but not nearly as much as I had then, my hands started to regain some of the muscle mass they’d lost, and after that I realized that, given time and rest, my nerves were actually able to recover some function after injury.  This is something I was taught could not happen, and it makes little sense given the fact that my neuropathy is progressive, but my nerves apparently have the same philosophy I do, and they keep finding workarounds that baffle my doctors.   (My doctors have long been fascinated by my nerve studies, because the amount of function I have makes no sense at all given the extensive nerve damage.)  Armed with this knowledge, though, I started trying to use my legs more again, and discovered, to my surprise, that I actually could, as long as I was very careful about which ways, how much and how often I used them.  It was around this time that my right arm just stopped working one day, out of the blue, due to a nerve entrapment that may or may not be related to my genetic neuropathy.

Through all of the setbacks and heartaches, though, I did my best to find a workaround every time. For most of the physical issues, I have managed so far.  But the one thing I cannot manage is the fatigue.  My muscles are very healthy and very strong, my neurologist would tell you I’m built like a tank.  When my nerves are capable of telling them to move they do, when my nerves are capable of telling them to hold, they hold, and when my nerves are capable of telling them to let go, they let go.  But my nerves are damaged, inconsistent, and constantly under attack from my immune system.  My nerves have nearly forgotten how to send the “off” signal altogether.  My muscles are randomly being told to tense or move and almost never being told to release.  This keeps me strong despite the nerve damage that would normally cause atrophy, it also keeps me in pain and exhausted.  The solution is to take medications that dampen the signals and tell the muscles to relax anyway.  Of course those are also meds that themselves cause fatigue.

What you do not understand, is that the physical issues I have are not the real disability.   The pain levels and the fatigue are the real disability. I simply cannot function day to day, with the amount of pain I have, without meds.  I simply cannot function, with the amount of fatigue I have, without meds.  But the meds that help the pain also increase the fatigue.  The meds that decrease the fatigue cause a different type of fatigue, which means the best I can do is find a middle ground between the two, where I can sort of function… and sleep, a lot.  Since my disorder is auto-immune, I also go through cycles where my immune system is busy attacking me.  This causes the type of fatigue  you get when you have the flu, on top of everything else.

So I require 10 hours of sleep on the good days, and I go through days, sometimes weeks, where I simply cannot stay awake.  It is not rare for me to sleep 3 days straight, just getting up long enough to visit the bathroom and refill my water bottle.  This is not laziness.  When I was in school, I handled this by staying home on the bad days.  I cried from the pain until I could eventually fall asleep at night, and my parents or siblings fought tooth and nail to get me to wake up for school the next morning.  On the good days I got permission from my teachers to listen to music or read books during class, so that I could distract myself into staying awake enough to hear what was taught (and I still got great grades).

When I was working full time, I set multiple alarms to wake me up in the mornings.  I handled the fatigue at first by sleeping during my lunch breaks, when the disorder progressed to the point that wasn’t enough, I dropped a few hours on my work week, when that wasn’t enough I took Wednesdays off so that I could sleep a day in the middle of the week.  But it got to the point where that still wasn’t enough, I was regularly falling asleep at work.  My employers generally let me get by with this, because I was doing great work in spite of it.  But eventually it got to be too much, so I stopped trying to work a regular job and decided to do consulting work instead.

When my arm went out, I was at a complete loss.  I had spent my entire life finding work-arounds for my legs and my hands, but I had always been able to count on my upper arm strength.  After all of the things I had had to give up already, I simply had no idea how I was going to function without both upper arms working.  The pain in my arm was off the charts, and supination and grip were impossible.  I couldn’t drive safely.  I couldn’t type.  I couldn’t get my wheelchair out of the car.  I couldn’t use my crutches.  I had another medical problem caused by the meds at the time that left me unable to sit up, so I had to spend most of my time laying down.  I had a major project underway that I simply couldn’t complete, and my customers lost a tens of thousands of dollars because of it.  I had started back to school to finish my degree but had to drop out again.

When my arm started to recover, I went to the vocational rehabilitation department for help figuring out what I could do.  They had no answers.  They refused to help me find anything, because they felt working was beyond hope for me.  They talked to social security, who had a fit because they thought I should have been on full disability years before.  Where most people are denied those disability benefits, I was forced onto them.

I was not willing to give up, but I was not able to keep living in California.  I moved back to Ohio, against my better judgment, because I thought I would have a better support system here, the cost of living is a lot lower, and I figured I’d eventually find another work around that would let me keep being productive.  I also knew there was a surgery that could help my arm, and I figured someone would be willing to do it.

Fast forward a few years, and most of the people I encounter seem to see a fiercely independent girl that can take care of herself.  Because I live alone, and don’t really have a support system here at all, I simply don’t have the ability to venture out into public on days when I can’t function well.  Because most homes around here are not accessible, I simply don’t visit you unless I’m doing well enough to handle it.  Unfortunately, this has led to the perception that I must always be doing as well as I am when you see me out and about, which is very far from anything close to the truth.  The days I venture out are my very best days, and the act of venturing out generally takes quite a toll on me once I return home, making the following days even worse than they might have been.

It is all I can do to keep up with the necessities of cleaning, laundry, yard work and such, but I do as well as I can.  I have always been independent and I want to stay that way as much as I possibly can.  And I desperately want to be supporting myself as well, despite the situation I’m in.

So I started my own business making toys.  It probably wasn’t the best idea in retrospect, to start a business where I had to use my hands, but it was the best idea I had, and at least it was something.  At the time I thought that my arm would recover, and I could make things on the good days and sell them on the bad days.  The business has done well, all things considered, but without startup money a business can only grow so fast.  With weeks and months where I can’t be productive, it’s bound to grow slowly, and with an entire year where I had to shut down because of uncertainty in the toy safety laws, I lost all momentum and had to start over.  But assuming I could keep plugging away and didn’t lose more function, I really believed I could build the business into something that would not only support me, but allow me to hire others.  That was my goal.

But that was not good enough for you.  You told people behind my back that I’m stealing from you by collecting disability.  You joke about how I’m taking advantage of you and robbing you blind.  You think I’m just fat and lazy and milking the system.  But you’re only showing your ignorance.  You’ve never even asked me what’s wrong.

I would give anything to have a regular job, or even go back to consulting, but what kind of job do you take when you don’t know from day to day which limbs will be functioning?  How do you look an employer in the eye and say you’re right for the job when you don’t know whether you’ll be able to stay awake for more than 2 or 3 hours in any given day?  What kind of person takes a job, knowing full well that they probably won’t be able to handle the schedule?  What kind of person takes a job, when they know they may have to call in sick for an entire week?  What kind of person takes a contract job, only to watch their customers lose tens of thousands of dollars when they can’t make the deadline?  Do you really want me lying to get a job I’ll end up losing anyway, when so many better suited workers are desperate for jobs right now?

Perhaps you would prefer that I grabbed a piece of cardboard and sat on a street corner, begging for my living.  You could watch me rock and moan in pain, off my meds for lack of insurance, with uncontrollable spasms.  You could laugh at me as I collapsed, while trying to walk somewhere to find a place to sleep.  Perhaps then you would realize how bad off I am without these supports, perhaps you would be disgusted, and think that someone should do something to help people like this.  More likely, you would just assume I was a drug addict, on welfare, and would rant more about how people like me are stealing from you and robbing you blind.

You have been blessed.  You have a loving family, a good job, and have come through life relatively unscathed, with your abilities intact.  Sure, you have had setbacks, you have had injuries, you have pain to live with, but much of that is due to hard living and reckless decisions in your youth.  Perhaps you are hard on yourself.  Perhaps you blame yourself for the pain you’re in, and that makes you want to blame others for their pain.  But not every situation is the same.

You did not come out on top because you are smarter, or braver, or worked harder to overcome your struggles than everyone else (though you are smart, and you may be brave, and you do work hard, and that is commendable).  You came out ahead largely because good people were praying for you, supporting you during your down times, and giving you second chances when you screwed up.  Instead of thanking God for your good fortune and passing on some of the goodwill, you’d prefer to rub it in the faces of those who have not been so fortunate.  And instead of offering a simple word of support, that could do more good than you’d ever imagine, you’d rather try to break someone who’s already down.

I wonder if your bitterness towards those of us who are struggling is blinding you to your own blessings.  Can you even enjoy the privileged life you lead?  I feel sorry for you.  I wish I could help, but you’re too busy pushing me down to see that you are drowning.



Filed under Disability, Personal, Rants

What’s your ideal church service?

(I started this blog entry months ago and am just now finishing it, so if the first part sounds odd to those who know what I’ve been up to lately, that’s why…)

I had to drive back home from my parents house tonight, not really a long drive, but an hour and a half allows for a decent amount of reflection.  I spent most of the time musing about the differences between various church services, and what some people consider “proper”.  I grew up in church and gave my life to Christ when I was 8 — over the years I’ve attended services at more churches than I could even think to count, in a wide variety of denominations.

The past few years I’ve been gravitating more towards pentecostal churches (while searching for a new home church) and the overlaps between what people consider “pentecostal”, “holiness”, “full gospel”, and “charismatic” can sometimes make for some very unexpected experiences when one goes to check out a new church.  Many of the people from the churches I grew up in hear the word “pentecostal” and immediately freak out, recalling stories of poisonous snakes being passed around during services, people barking like dogs, or just mass chaos.

I recently went to visit a church with a good friend of mine, they considered themselves old-fashioned holiness pentecostal, and they’d just come out of a 2 month revival.  At one point during the worship service, amidst other things like crashing symbols, head-banging, isle-running, people dancing jigs, etc, I looked up to find the little 70-something year old pastor jumping 6 feet or more, from the very top of his lecturn down to the floor below the stage.  I found this quite astonishing, given his age, and felt the need to tell Mom & Dad about it.

Services are markedly different at their church, and I’m sure they would be completely uncomfortable witnessing one like that.  In any case, on the way home I was thinking about the differences and which of the various types of services makes the most sense to me, and why.

My thinking went like this…  Church services can be about a number of things, depending on the congregation and why they’re coming to church.

Some people see church as a social club, or a weekly obligation.  Services, then, are all about social gathering, ritual, visiting your fellow congregants, and putting in your obligatory time in prayer, communion, or whatever activities are seen as part of what you call “church”.  Much like a board meeting, there’s an expected set of activities and an order to follow.  The service goes best when everyone is calm, collected, and in their place, so that the event can run smoothly and people can get on with their lives.

Some people see church as a place to recharge after a long week.  They come wanting to be entertained, get their fill of fellowship, have their emotions revved up and their heart refreshed.  Services then should often get the kids out of the way (so that they get a break from parenting), and should knock their socks off.  The music has to be positive, upbeat, and energetic.  They want to get wound up, pumped up, and filled up so they have the energy to take on the coming week.  The worship leader has to know how to stoke a fire, and pastor’s job is that of a motivational speaker.  If people with this attitude are pentecostal or charismatic, they also want the Spirit to entertain them, so they want to hear tongues and see people dancing and running and get so worked up that they’re disheveled from the excitement by the time the service ends.

But are either of those things what church is supposed to be about? Is going to church supposed to be filling a social obligation?  Should it be all about you and your needs?  Or is it supposed to be about filling your obligation to God?

Yes, we often need recharged after a long week, church is a great place to meet people with similar interests, encouraging messages are great, and getting all worked up while singing can be a really great experience, but you can get all of that at a concert of your favorite band, or maybe at your local senior center, depending on your tastes.

God’s saving grace wasn’t offered as a club membership card. Christ’s radical sacrifice pulled us out of certain doom, and we should be excited about that.  We should want to shout it from the rooftops  (or twitter, perhaps, these days).  We should be excited for every chance to draw closer to him.  And yes, we can do it from home, it’s not necessary to wait til church time (and we shouldn’t wait) but we humans are so easily distracted by the everyday mundane and the slings and arrows of life, and sometimes that weekly meeting is necessary to refocus ourselves on what is important.

Part of a healthy church service then, I think, requires time to reflect on what He did for us, time to refocus and regain that gratitude that we had when we were first saved.  Some of that comes in worship.  Not just singing praise songs, but true worship — true focus on giving God the praise he deserves for his love and sacrifice — sometimes with song, sometimes with prayer, sometimes with testimonies and praise reports.  And when we’re in the worst places in life, sometimes hearing others give those testimonies or praise reports, hearing others truly praising God, is enough to help us find our own way back.

When you go to a concert you may scream praise for the musicians, clap, yell and sing along at the top of your lungs.  Why?  Because you love their talent?  Because the words they wrote mean so much to you?  Because they’ve provided you with entertainment for a fee?  When you go to church, do you sit on your hands and try not to fall asleep?  Is God’s sacrifice such a small thing that you can’t even give him a shout or clap your hands?  If you do shout and clap, is it to praise the worship leaders, instead?  As if they’re really there to entertain you, to get you worked up, instead of trying to lead you to a closer walk with God?  Is there something wrong with this picture?

Our commission wasn’t to come be entertained once a week for the rest of our lives, it was to go and make disciples. Just as we can’t train people to follow Christ if we’re not following Him ourselves; we can’t teach people about Him if we don’t know about Him, so part of our job as Christians is to be good students.  And if we’re going to be getting together once a week to refocus on praising Him, perhaps we should learn more about Him while we’re there.  That’s the whole point of having teachers and preachers, I think.  Not to tickle your ears, tell you how great you are, inspire you, send you home with warm fuzzies; but to teach you, to correct you, to help you grow in your walk with God so that you can do a better job of going out into the world and spreading the good news.

“But what about the Spirit!?” you say. And to that I say: the Spirit doesn’t come to entertain us, either.  The Spirit doesn’t show up just to give you a warm fuzzy, or a message in tongues, or knock you on the floor, or make you run around screaming.  He’s not there just to serve you.  If He shows up, and if you don’t drive Him away, He’s there about the Father’s business.  Sure, depending on your personality type and how you react to Him sometimes that means you’ll get that warm fuzzy, or a message in tongues, or you’ll be knocked to the floor from the intensity, or perhaps you’ll get so emotional about it that you’ll run around screaming.  But that is not the point of His visit, and if you focus on that — if you focus on your own emotional response — you’re missing a lot.  Now, yes, the Spirit is a comforter, and part of His job is to comfort God’s people, but He is also meant as a helper, not for each individual but for the kingdom of God as a whole.  (1 Corinthians 14 has a good discussion of all of this).

Sometimes it serves God’s purpose to comfort a person in their time of sorrow, sometimes the Spirit’s job is to chastise, sometimes to edify, sometimes to teach, and sometimes to fill a person with power and give them the right words to speak.  What the spirit does with you in one service is not what the Spirit will do in every service.  God’s voice may be in the fire one day and in the still small voice the next.  If you come wanting to get riled up and excited with every service, God will not be able to have His way when He needs you quiet and reflective.  If you come wanting to sit on your hands and have a nice relaxing time, God will not be able to have His way if He needs you to shout a message of encouragement.

God knows what He’s doing, and we need to let Him have His way in ‘our’ services.


Filed under Bible Study, Tips & Advice

Advocacy and Inadequacy – Part 2

This is Part 2 in what will likely be a 3 part series.  Here’s Part 1, if you haven’t read it yet.

So I’ve started getting involved in the disabled world once again (mostly online, for reasons I’ll try to outline here).  And unlike the sports world, where I actually had a little talent.  I feel completely inadequate now.

On a wheelchair basketball team, many of the players walk into the gym, pushing their chair, before doing a striptease to remove their fake legs or their braces so that they can get in their chair to play.  Walk into a gym on a tournament day and you’re liable to see an entire row of fake legs, pants and all, leaning against the bleachers… it can be quite disconcerting.  In this environment, no one gives a second glance to a girl with neuropathy, who can walk sometimes but uses her chair for long distances or bad days, and has to tape her hands to get them to put the ball where she means it to go.

Even a fairly ‘hidden’ disability becomes obvious to those who see it day in/day out.  My fellow ball players knew of my limitations, they encountered them during games, they saw me struggling to walk or use my hands when we went out after games.  They knew I was disabled, even though I had a rather bizarre kind of disability.

Anyone who ends up spending much time with me in more than one environment will eventually come to understand my limitations in a similar way, but this does not apply to most of the people in my life right now.

I live alone.  Very few people see me on my bad days, because my bad days generally prevent me from leaving the house.  Add to that, that over the years, despite the progressive nature of my disability, I have slowly learned how to prevent many of the the exacerbations that lead to bad days and loss of function.  I’ve also found a decent medication (allergic reaction notwithstanding) combination that has left me in a generally functional state most of the time.  Most of the time I can walk, and often can manage to look fairly normal doing so, even without my braces.

This has left me in a rather bizarre situation.  Here’s what I mean by that…

There are some people in my life who have never seen me using a wheelchair. Several of the people in my small-town post office, for instance, have only seen me walk in.  Sometimes with a cane, sometimes without.  It’s only a few feet to the counter and back to my car, and there is no situation in which it makes sense to haul my chair out of the car, put it together, fight to open both doors, twice, and load the chair back in the car again, just to check my PO box or mail something.  If I can’t walk, I can wait til tomorrow, or I can schedule a mail pickup.  People who work the convenience stores nearby have the same experience of me, as do those in most of the restaurants.

There are other people in my life who have never seen me out of the wheelchair. I use the chair for long distances, or any time I’m unsure of how much walking will be required.  I do not walk into a grocery store.  I rarely walk into a church (it’s ridiculous to try to concentrate on praising God when you’re in massive amounts of pain or worried you won’t be able to get back to your car afterwards).  Consequently, many of the people at my church, or a church I have only been to a few times, assume I’m paraplegic until I hop out of my chair to do something and freak them out.  I’m sure many of the people in the grocery stores, Walmart, the Y, doctor’s offices, movie theaters, and various other places assume the same.

This can be extremely confusing to people, for reasons that are perfectly understandable. Those who see me walking most of the time think I’ve sustained some sort of sudden injury the first time they see me in a chair.  Those who see me in the chair most of the time think there’s been a miracle the first time they see me walk.  (And on some occasions, people don’t even recognize me at all.)  I do not have the time or the energy to stop and explain my entire life to all of these people, nor would I want to.  And my attitude is often less than conducive to helping end this confusion.

Not that I’m excusing a bad attitude, but consider it from my perspective…  If I’m using a wheelchair in a circumstance where I would normally choose to walk, that means I’m already having a very bad day, pain levels are high, and something has compelled me to come out into the world despite this.  I’m not going to be in a good mood.  Then I run into Joe Schmo, a nice enough guy (who I think I should probably know but I’m not sure where from because I cannot remember most faces), who, upon seeing me in a wheelchair for the first time totally freaks out, and says “oh my gosh, what happened to you!?!”.  Now, on a good day, I would likely say “oh, nothing, I use a chair on bad days is all” or something similar, while smiling at him to try to ease his panic.  On a bad day I cannot muster this type of response.  As well intentioned as I know a person is, “the what the hey happened to you?!” reaction always rubs me the wrong way.  I rarely have the energy to engage in small talk on these days in the first place, and I know that if I respond, I’m likely to bite this poor guy’s head off for no reason.  I’m likely trying my hardest already to get enough energy to get done what I need to do and get home, hoping beyond hope that I don’t have to talk to anyone at all.

The opposite situation can be just as frustrating, but for different reasons.  My disability affects both my arms and my legs, in varying degrees, in ways that vary from day to day.  So sometimes when I choose to walk, it’s not because my legs are doing better, but because my arms are doing worse.  Sometimes I can’t physically lift my chair out of my car, sometimes I know I won’t be able to push the chair, and sometimes I have to even leave my cane in the car, because as unsteady as my legs are that day, I know I won’t be able to hold onto the cane.

So I’m walking along, however precariously it feels to me, however much pain it’s causing, and I run into someone I know.  More often than not, running into someone I know somewhere, while I’m on my feet, is horrific on it’s own.  People love to stop and talk when they meet someone unexpectedly (even I do, on good days, usually when I’m in my chair! lol).  Stopping to talk while I’m on my feet hurts.  If there’s not a place to sit down, or something to lean on it may cause me major problems.  I may risk not being able to make it back to my car, I will likely have to deal with much less ability a day or two later.

In this context, when someone says to me, “oh, you’re walking, how wonderful!”  My first reaction is to want to glare at them and groan.  When they couple that with “God really must be answering prayers” it tends to make me mad.  Not because God doesn’t answer prayers, but because I’m standing there in massive pain because my arms are worse, this is not a case of answered prayers, and their ignorance is infuriating.  But they mean well, and I understand that.  From an outside perspective, someone who doesn’t know the details of my condition and doesn’t bother to look for the pain behind my eyes will understandably come to such a conclusion.  If I tell them that no, this isn’t God answering prayers, this is me too sore to even use my mobility devices but desperate enough to venture into public anyway, that accomplishes little but taking the wind out of their sails while making me look bitter.  There’s little I can say at this point that won’t dishonestly perpetuate their ignorance, depress them or offend them with my ‘negativity’, or just make things harder for me.

The third alternative is just as frustrating.  Say I *am* having a good day. I’m walking somewhere I usually take the chair, someone sees me, and says, “Tammy, you’re walking!  That’s so great!  Praise God, he must be healing you!”.  Now, they’re happy, they’re praising God, I *am* having a good day, part of me wants to just praise God along with them, but this is problematic, and here’s why:  the next time they see me I will probably be back in my chair.  If I praise God along with them, and don’t stop to correct their view of my disability, likely one of two things will happen the next time they see me in the chair: 1) They will be disheartened.  They thought they witnessed a miracle the other day, and here I am still disabled.  In worst-case scenarios this may actually shake their faith.  I want no part of that.  2) If they buy into the word-of-faith nonsense, they may immediately assume that I am in the chair again because I lack faith.  I do not like confrontation and I do *not* want to have that conversation.

I am, therefore, compelled to make sure that no one walks away from an encounter like this believing that they’ve witnessed a move of God because I happen to be up and walking that day. I may joke about it, but I have to try to make sure there’s no confusion.  And I’ll admit I’m a little bitter about constantly having to have this conversation.  I try my best to make sure that everyone I meet, while in the chair, knows that I can actually walk.  That way I can try to avoid this conversation altogether.  But I inevitably run into people who remember me when we may not have even had a conversation before.  In these cases this often happens, and I’m left once again having to burst someone’s bubble and tell them that no, they’re not witnessing any kind of miracle.  People do not like this conversation any more than I do.  There’s no happy, positive, light-hearted way I’ve found to say sorry man, no miracle here, I’m still disabled! Even something like “God may heal me one of these days but it hasn’t happened yet, I am having a great day today, though!” comes across to a lot of people as naysaying.  How dare I not see the miracle in it.  If only I’d believe that my good day was a healing maybe it would stick! I cannot possibly convey to you how frustrating it is to have to encounter these kinds of reactions over and over and over again.

Usually, after a conversation like this, my good day is ruined.  I just had to stand there for however long, usually without a way to sit down or something proper to lean on, so my legs are tiring and possibly shot for the day now, and my mood has darkened besides.

So if you ever see me out in public and wonder why I go through stores with my head down, trying my hardest to avoid any eye contact with anyone, sometimes with headphones in so I won’t have to notice that person across the way that’s trying to get my attention… these conversations are why.  Some days, I just cannot deal with the prospect of having to have any of them.

But a person with this type of attitude out in public hardly seems a good fit for any kind of advocacy work, right?

And this is where I’ll break for Part 3, where I’ll hopefully finally get to the actual post I was trying to make in the first place :P

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Filed under Disability, Personal