Tag Archives: personal

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.

Sincerely,
Me.

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Filed under Disability, Personal, Rants

Happy Father’s Day!

Happy father’s day to a couple of great dads! :)

I know it’s been a really long time since I posted… I’ve had a crazy couple of weeks here.

In any case, I wanted to post something for Father’s Day, so I thought I’d share one of the first songs I ever wrote.

My earthly father’s pretty darn cool, too, here’s a couple of pics for ya:

Dad in his hippy days

My Dad

<-- he's glaring at me for uploading that pic

 

 

 

 

 

 

 

 

 

My dad is probably the hardest working person I’ve ever met.  He worked an average of 80-90 hours per week through my entire childhood (at one point he held 2 full-time jobs and a part-time all at the same time), but still tucked me into bed every night when he got home.

The few hours he had left he spent working on stuff around the house for us, and somehow still found time to complete an associates degree (and most of a bachelors) in electrical engineering from home.  I remember sitting on a chair next to him at the kitchen table at night watching in awe as he built circuits and fixed things with his soldering iron.

Some of my fondest memories are of all the times my sister and I cajoled him into playing guitar for us (not that he didn’t love playing, he was just tired!).  Now that I think about it, it had to be amusing for him to have his little daughter begging to hear “House of the Rising Sun”.  I could have listened to him play for days on end.

He still plays for me every once in a while… now that his shoulder injury is healed and he’s cut back to halfway normal working hours I’m hoping I’ll get to hear a lot more.  He played backup for me once at his church (I sang flat the whole time, it was awful lol), and we’re hoping to do more songs that way.  Perhaps I can get him to let me record a video at some point…

In any case, that’s my dad, and I love him to pieces.  Isn’t he great!?  :)

 

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Filed under Music & Songs, Personal

He wrote me a story!

If you know me at all you should be aware that I totally love nursery rhymes and fairy tales and the like, and I’ve most recently been plugging my friend Fred’s ebook of fairy tales (see that Neverwas book cover over there? –>) along with some of his other stories.   You should totally go buy the book.

Anyway, it seems that Fred decided to take Goodread’s request that you “tell a story of how you met” literally, and he wrote this cute little fairy tale for me.  How totally sweet is that?!  It’s a fun read, and I hope you enjoy it…


 

Little Green Stocking Cap
by Fred Grenvile © 2011

This is a little tale that I wrote as an allegory of the way Tam and I met. Viewed one way I guess it could seem cheesy or patronizing, but the real details are private and this is close enough to get the gist across. Since Tam has expressed a real fondness for my alternate fairy stories and fables I thought I’d use that as the basis. I like the way it turned out but welcome comments here and on my own site at http://wwwGrenvile.com.

Fred Grenvile

Once upon a time a Big Bad Wolf met a little girl wearing a dark green stocking cap. The wolf greeted the little girl politely and she told him that she was called “Little Green Stocking Cap” because she was never seen without it, for an evil fae had cursed her to never remove it. She was called thus for so long that soon everyone had forgotten she’d had any other name, even she! Little Green Stocking Cap was wandering the woods on her way to find a house she’d heard was made of sweets. She had left her own home because her poor parents could not help her to remove the heavy green cap, and for shame they made her wear a silly bonnet to cover it when ever she went out of the house. Green was quite courteous to the wolf, which was quite a novelty for him indeed. But when they had spoken for a time, Little Green Stocking Cap remembered that wolves had an unfair reputation for eating little girls right up. She became frightened and ran away very fast.

Green Stocking CapNow the wolf had just remembered that the house of sweets had a very bad reputation, indeed. So, valiantly, he attempted to warn the little girl that what was sweet to the taste could turn sour on the stomach. But Green ran very fast and he became winded, so with a snarl he turned and went on about his wolfly pursuits.

Green Stocking Cap did not trust his quick retreat and continued as fast as her little legs could carry her. Just when she thought she could not run another step, there in the next clearing she saw the great house made of sweets. The walls were chocolate cake and the windows were sugar candy. Each tile of the roof was made of a different kind of chocolate delight. With a cry of joy, Green Stocking Cap ran and flung herself on the sweet-tart steps of the house and fell fast asleep.

Just as it fell dark a beautiful princess appeared and opened the door to the sweet house and invited Green Stocking Cap in. Green was very tired and the princess was so beautiful that she trusted her instantly and was soon fast asleep in a bed of her very own, with sheets of spun sugar and pillows stuffed with kettle-corn.

For a time all was lovely in the fine, sweet house, then one day Green took a fancy to hold a celebration to thank the beautiful princess for her hospitality. Green waited until she was out then slipped into the the princess’ chamber to seek correspondence that might reveal what friends might visit to celebrate.

On a high chest Green found a writing box that held many letters and notes. As she was copying the most promising names, the princess returned and found her with her hand in the box. Before little Green could explain, the princess transformed and her true form was revealed to be none other than the same wicked hag that had cursed Green to always wear the cap!

Green gave a cry and ran from the house, just avoiding the clawed hand of the wicked fae. In her other hand was a great knife and Green had no doubt that should she be caught she’d soon be cut up and in the pot to boil!

Again, Green ran as fast as her little legs could carry her, but the cap snagged upon bushes and held her back, so that the fae gained upon her, calling all her wicked friends to aid her in catching the little girl. The fae truly did plan to feast that night!

Just as Green’s legs gave out and she fell to the soft mould beneath a great oak, the Wolf sprang out of the brush. Green’s heart quailed, for she knew she could not run another step. With the Wolf before her and the Hag behind, where could she turn. She was dinner for certain.

Just then the Wolf leapt and Green fell to the ground shivering, but he sailed right past and took a great bite from the Hag who had come up behind Green unawares. They fought and tussled in great fashion, but eventually the Hag was so bloodied she tore herself free and fled with a screech, grabbing a broken stick and flying off on her makeshift broom.

The Wolf led Green to an old shepherd’s hut by a glassy lake. It was none to clean, but Green soon found she had made a home and in time the local animals and herdsmen became a new family. And ever after the Wolf watched over her from the deep wood.

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Filed under Guest Posts, Personal, Stories

When Worlds Collide

I’ve been debating about making this post for the past few weeks.  So that I don’t have to repeat a bunch of stuff, please read this rather short posts here and here before continuing.

What I’ve been debating about for the past couple of weeks is whether or not to write a post for “Autistics Speaking Day”.

I’m actually still debating right now, as I write this.  I have a habit of writing blog posts and then deleting them, so if you’re reading this then I guess I decided to follow through (most likely after writing and rewriting a few dozen times) :P

I don’t actually know who, if anyone, reads this blog on a regular basis, or who might read it today or down the line.  I do know that there’s a good chance that family members, old friends, people I met through my business, people from autism groups on twitter, and random strangers may all see this.  And that is the main reason why I’m reluctant to write this post.

I pride myself on being honest.  Completely honest.  I don’t lie (ever), and I try my best not to act one way around one group and another around another group.  Everyone that knows me at all knows that I’m a Christian, and you all have my permission to call me on things when you don’t think I’m living as a Christian should (though I may not agree with your assessment, I will take it seriously).   Being honest is as much a part of my belief system as it is a part of my core personality.  I’m not perfect, but it’s just not natural for me to be dishonest.

But there’s a place where “being perfectly honest” meets “sharing too much”.  Omission is not the same as dishonesty, unless it’s done to purposefully mislead someone.  For instance, you most likely wouldn’t run around telling everyone you have a bad rash on your bum, but if you say “there’s no reason, really, I just like to stand!” when someone asks you why you aren’t sitting down, you’re lying.

That line between being honest and sharing too much can be hard to find, though, sometimes.  And for me, it’s hard to find right now.  I want to share this information, for those participating in Autism Awareness Day on twitter, but I’m not sure I want to share this info for the people I’ve known all my life.  Many of which, I’m sure, will think I’m crazy.  I don’t want to open myself up to (more) ridicule, but I also don’t want to feel like I have to be two different people.

Several years ago I came to the conclusion that I probably have very high functioning Asperger’s syndrome (Asperger’s is on the autism spectrum, in case you didn’t know).  I came to this conclusion after a lot of research, though I’ve known about, and identified with, autistic people for most of my life.  Until a few years ago I never considered that I could be on the spectrum, because, well, I communicate too well.

I was weird in school.  I’m still weird.  Ask anyone that knows me (except Robin, who thinks I’m a saint for some insane reason), and they’ll agree.

I grew up feeling like crap.  I hated myself.  I wanted to die, sooner rather than later.  I felt like I was stuck in a world where I didn’t belong, I was in pain all the time (from a neurological disorder, see this post) and I just wanted to go back home to God, where I belonged.  (Okay, I still feel that way most of the time.)

But the only exposure I had to autism was classic autism (little kids, who I totally “got” and could play with for hours, but who were mostly nonverbal) and the “autisic savant” stories like the movie Rainman depicts.  I remember wishing as a teenager that my math skills were just a little more advanced (I finished college level Calculus I at Purdue in 4 weeks the summer after my sophomore year of high school, but my skills weren’t good enough to qualify as ‘savant’), but I never really thought about it beyond that.

I was the smart kid.  I helped teach classes when the teachers were negligent, I helped tutor other kids when they just couldn’t get something, or they were scared a parent would beat them for having grades too low.  I asked questions in class every time a teacher was vague, not because I didn’t understand, but because I figured someone else might not understand — and besides, it’d make the teacher better at her job.  I had exactly one friend in elementary/jr high, but I treated her like crap (I didn’t understand that’s what I was doing, I didn’t know any better).  I got along with most everyone else, I just didn’t consider any of them friends (and I’m pretty sure the feeling was mutual).

I always felt like something was wrong with me.  I never felt human.  I still don’t, most of the time.

I thought I was crazy.  Or everyone else was crazy.  Or maybe both.

I never dated.  I had a whole list of reasons why I never dated (I’d have listed them if you’d asked me), but it really came down to the fact that no one ever asked.

I simply could not comprehend why anyone would be upset about something sad happening in a movie.  It’s a story.  (see my previous post)

I never talked to anyone about how I felt inside until I was 16.  It really just wasn’t done in our family.  We would talk about things, just not the deeply personal kind of stuff.  Maybe other family members talked about that kind of stuff and I just missed it, I don’t know, but I don’t think so.

When I did try to talk about these things I found I couldn’t.  I met a guy named Ryan at church camp that summer, and he seemed really kind.  He was a counselor that summer and had the reputation for being a good listener, and I was desperate for help.  I tried to talk about what was going on in my head and all I could find was silence.  It hurt to try to talk.  I’m not sure what made him stay there, trying to coax it out of me, but he did, and I’m forever grateful to him.

At one point I gave up, and tried looking him in the eyes.  I’d never done that before, really looked someone in the eyes.  They say the eyes are the window to the soul, and I’d always felt an extreme need to protect that.  I would look at people, I would give “eye contact” but I would never hold that contact long enough for anyone to see inside.  I would look at a person’s eyebrows, or the whites of their eyes, or at something behind them.  I looked him in the eye though, forced myself to, and held the gaze, hoping that by letting him see he could just know what I was feeling and I wouldn’t have to try to find the words.  That hurt more than trying to talk, and I don’t think it worked.

I tried to contact him after camp, using letters, and found that it was much easier to write things than to try to say them.  I tried to explain the eye contact thing to him.  I think he misunderstood my intentions,  I’m still not sure.  But he wrote back, he kept in touch, he was even so sweet and helpful that he’d stand there on the phone for hours listening to me breath while I tried desperately to find the words for what I needed to talk about.  He stuck around for a while, always there when I needed him.  Then he broke off contact abruptly and completely.  I still don’t understand why, but there are two years I would not have made it through without him.  Ryan, if you ever read this, thank you.

I’m a pretty intelligent person.  I’ve only ever done one official IQ test and they never told me the results, but it got me put into a “gifted ed” program.  But the first time I took an “emotional IQ” test I think I scored somewhere in the bottom 30%.  That’s what got me started looking at Asperger’s.

And suddenly, perhaps, everything made sense.  Perhaps I make sense.  Perhaps I’m not just crazy, perhaps my brain is just wired differently than everyone else’s.

The “4 going on 40” phrase my mother always used when introducing me to strangers as a child suddenly made sense.  My inability to lie, and my tendency to take everything literally make sense.  The compulsion to hide in a corner and rock (which I rarely did, but often felt like doing) made sense.  My need to get lost in patterns, and my being completely mesmerized by geometric screen savers and spinning things made sense.  My inability to talk when upset made sense.  All those meltdowns as a child made sense.

Of course, just because it makes sense doesn’t mean it’s right.  I’ve not been officially diagnosed.  I don’t trust psychologists (for good reason, I could tell you some really interesting stories), and I’m over 30.  A diagnosis at this point wouldn’t do me any good, and the people who don’t believe if now would still doubt it even if I had a diagnosis in hand.

Besides, I have the most awesome friend in the history of friendship, and he has dedicated significant portions of the past decade of his life to helping me grow as a person, learn how other people think, and overcome some of my more challenging issues.  (Oddly enough, he doesn’t believe I have Asperger’s either, but he provides more help than I’d ever get from a therapist.)

So does it really matter if I have Aperger’s?  Probably not.  But would it have helped to know sooner?  Absolutely!

Had I known that my brain was perhaps just wired differently than everyone else’s, I might not have breached untold numbers of social protocols in my teenage years and my 20s (because I would have known to spend the time learning, then).  I might not have ended up in a situation that scarred me so deeply I had to spend 10 years recovering.  I might have realized decades sooner that stress sets off all of my autistic tendencies, and calling a good friend when I see it starting can save me an entire day of banging my head (literally) against a wall.  Ryan might not have disappeared on me.  I might not have treated my best friend like crap when I was in school, without even realizing I was doing it (so sorry, Jenny).

My life might be different, better, now, in so many ways, had I only known.  Just knowing it is a possibility, whether it’s definite or not, has helped me tremendously for the past few years.

So I guess I’m going to go ahead and post this, and I might regret it, but at least I was honest.  If you know someone who shows autistic tendencies you may be afraid to say anything.  If it’s a young child let it go, no need to freak out a parent.  But if it’s an older child, and it seems obvious, say something to the parent.  If it’s a teenager, say something!  Even just a simple “have you ever heard of autism?  Perhaps you should look into it.”  Sure, it might be embarrassing, especially if you’re wrong, but you never know how much grief you could save someone.

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Filed under Disability

Spoon Theory

This one is more of a personal entry than anything else, but someone shared this article somewhere today and I found it really well written. If you’ve ever wondered what it feels like to live with a disability that causes pain and fatigue, this is a good read…

http://www.butyoudontlooksick.com/the_spoon_theory/

I finally got to a dr today for the first time in a while and was pleasantly surprised to actually have a decent visit. I was really stressing out about it, but it sounds like I finally found a gp that knows what he can and cannot deal with, and seems perfectly happy to take the time to help me find a neurologist. He was also ok perscribing the meds I usually take without forcing me to go through more tests (that’s a first!).

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