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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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Filed under Disability, 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.



Filed under Disability, Personal, Rants

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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Perspective Taking

I have a neurological condition that causes simple things, like walking, to require actual thought on my part.  Walking also, more often than not, causes fairly significant pain.  The same condition, unfortunately, also affects my arms and my stamina.  So everywhere I go, I’m left with a difficult decision:  Which ambulatory aids will serve me best right now?

Most of the time, these days, my legs are mostly functional and my pain levels are nowhere near what they used to be.  This means that on good days I can walk a little ways before I have to be worried about it.  A trip into the local post office or convenience store can usually be done without even taking my cane.  A trip to CVS or Walgreens, which aren’t very large here, and have carts I can lean on, can often be done on foot.  A trip to the grocery store or Walmart, however, is impossible without my wheelchair, even on a good day.  I can usually walk into a restaurant with my cane, since I’ll be sitting for a bit between, and walk back out with no problem.  A movie, however, means sitting in one cramped spot for over an hour, so I know I won’t be able to walk back out.

Most places fall somewhere in between, and I usually have to take a minute, upon arriving, to assess the best solution.  This assessment  involves things like the amount of walking I expect, the terrain, the weather (wheelchairs in rain or snow kind suck, but leaning on a cane with a wet tip can be disastrous), how sore my legs are, how sore my arms are, how tired I am (the wheelchair, though it’s ultra-lightweight, is still too heavy for me some days), and, on bad days, "how badly do I really need to do this, anyway?" (I frequently get to the grocery store parking lot and just give up and drive home).  

Whenever I go somewhere new, and the size of the building/distance I have to walk isn’t readily discernible from the parking lot, I have a policy that I always take my wheelchair.  The very last thing I want is to go somewhere new and get stuck, and have to try to send some stranger to get my wheelchair for me, or end up sitting somewhere crying in pain, too embarrassed to ask for help.  This means that the vast majority of people, upon meeting me for the first time, meet me in the chair.

My chair is not one of those fold-up hospital things.  I played wheelchair basketball, quite seriously, in college, and my chair is a custom-fit, ultra-lightweight sports frame with built in shock absorbers and triple-cross spokes.  It’s not the kind of chair you see every day, unless you live on a college campus or have an acquaintance who’s been wheelchair-bound for an extended period.  Upon seeing me in this chair, most people seem to assume that I am paraplegic.  I usually try to let people know that I can walk, especially if I think I might see them again in circumstances where I’m not in my chair.  This never seems to sink in, though.

Today, for instance, I went to my ENT appointment.  It was raining.  The ENT is inside an office in a larger building, with insufficient handicapped parking space.  Every time I’d been there I’d taken my chair in, because the doors on that building are heavy and hard to open when I’m standing, and the walk to the office is a decent distance.  But no handicapped parking means no striped-zone beside my car, which means I have to worry about whether I’ll be able to get my chair back into my car when I come back out.  My legs are working pretty well today, and I had energy despite running on 2 hours’ sleep, so I decided it made more sense to walk in today.

The people in his office had no clue who I was.  They even made me give them my insurance cards again, which they’ve never asked for since my first visit there.  I think they were doubting who I was, I’m surprised they didn’t make me show ID.  When the nurse (who I know I had dealings with there just a few weeks ago) took me to get an xray she wondered why I was worried about standing still for it/why I wanted to lean on something.  The only person there who recognized me was the doctor, who asked where my machine was today lol

It was a bizarre experience for me.  I’m the one that usually doesn’t recognize people.  I am at least partially face-blind, I can often recognize people in context by their hair, glasses, and other unique features, but not usually by their faces, and if I see them outside of their normal domain I usually have no clue who they are.

People generally tend to recognize me, though.  I’m that fat chick in the cool-looking wheelchair, or I’m that girl that  hobbles around on the  cane with the funky handle (my canes have fitted quad handles cuz I can’t grip a normal cane properly), or I’m that lady with the weird leg braces.

It was quite an odd experience to have the tables turned.  

Usually, if I show up walking around someone who hasn’t seen me out of the chair before they do a double-take, they give me a perplexed look and sometimes ask if I have a sister.  If I show up in a chair around someone that’s only seen me walking/hobbling/on crutches/with cane, they look horrified and ask me what happened (despite the fact that I warn nearly everyone I expect to see again that I use a chair quite a bit, that never seems to sink in either until they see it the first time, and often not even then).  I’m used to surprising people in these ways.  But it’s very rare to not be recognized at all because of the change in ambulation.

It was a nice bit of comic relief in my day, but it really didn’t make up for the giant nasal scope the doctor tried to ram through my brain.

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What the heck is wrong with you anyway?

I don’t imagine many people read my blog, but since these go to Facebook I figure some people will see this at least… and I know a lot of you have been wondering for years so I figure I’ll just explain it once here so you don’t have to ask and I don’t have to explain it for the umpteen-millionth time and have you staring at me like you didn’t get it anyway.

What’s wrong with me?  Why do you see me walking one day and in a wheelchair the next?  Why am I always on about my arm not working when I’m clearly using it while you’re talking to me?

Odd as it may seem almost no one I know asks me that.  I know everyone wants to know… the kids ask (nearly every time I spend time with them) but the adults almost never do.  When someone does ask I think the answer is ignored more often than not.  It gets frustrating for me and on bad days I’m likely as not to just give an exasperated sigh and spout off a bunch of long medical terms that you won’t understand, knowing you’ll respond by going "oh" and walking away.

So here it is, in more-or-less plain English.   I’ll bullet-point it so it’s easier to read.

What’s been wrong all along…

  • My immune system is eating my nerves – not my brain or my spinal cord but the little nerves that tell the muscles in my limbs and elsewhere to move.  
  • My nerves keep trying to repair themselves by rebuilding the lining, only to have my immune system attack again.  This means my nerves look like someone chewed them up and spit them out.  They are a mess of scar tissue and rather resemble what happens when a dog tries to devour an electric cord.
  • As a result, the signals that my nerves try to carry to my muscles get messed up.  Think of plugging in that electric cord the dog just chewed up – the electricity might arc outward and spark a fire, it might not get to the device it’s supposed to feed at all, or the signal might be sporadic.  Consequently commands from my brain telling my muscles to move may get lost along the way (if I try to move my foot chances are my leg will want to move first), cause spasms, and arrive very late (compared to normal ppl).
  • Since nerves carry pain signals back, as well as sending commands out, this means I have constant pain caused by this damage.  I also have constant pain caused by the cramping that’s a result of lost messages.  The less I try to move though, the less cramping I’ll have.
  • If I use my nerves too much the damage gets worse.  This is why my hands started to atrophy in college (when I was using my wheelchair 90% of the time and playing w/c basketball).  Carefully avoiding overusing any nerves is why I, more or less, have no strength issues right now.
  • After years of taking nothing but Ibuprofen, and after many more years of experimenting with every drug on the market I found that a combination of a seizure med (which helps to stem the constant overflow of pain signals coming in) and a muscle relaxant (to help keep my muscles from reacting to the signals that weren’t intended for them e.g. my leg cramping when I’m trying to use my foot) were able to help me get the pain in control enough to function on a normal basis.

What happened to my right arm:

  • A few years back the latest round of damage/repair to my nerves caused scar tissue to build up too much in a little tunnel that the nerve in my arm runs through near my elbow (that’s the guess for the cause anyway) and I woke up one morning, in excruciating pain, unable to use my right arm.  
  • Because the amount of damage my nerves already have, doctors are unwilling to do the simple surgical procedure that would open up that passage and unblock my nerve (is similar to the procedure done for carpal tunnel syndrome).  Since they won’t do that, the only solution is to take massive doses of anti-inflammatory drugs (ibuprofen) — the eating/repairing of my nerves causes constant inflammation around the nerves themselves — which shrinks the nerve just enough that it’s not being pinched and I get function of my arm back.  
  • If I use my arm at all the muscle starts to tighten around the tunnel and causes the nerve to be pinched again.  I can handle about 15 minutes light use of my forearm muscle before this happens and my arm stops functioning.  Once this happens, I have a removable full-arm cast that I put my arm in overnight to force the muscle to relax completely — sometimes it takes more than one night of this before function returns.

How all this affects my day-to-day life:

  • When I remember my meds on a regular basis and I’m careful not to overuse any nerves I can more or less depend on my legs and arms functioning for daily activities.  On good days I can walk around the house almost normally, write about a paragraph, and fix a few meals for myself without any real problems.  In the past year or two I’d say I’ve had good days about 2/3 of the time.
  • On bad days I may have problems even standing, I may not be able to hold a pencil – let alone write with it, I may not be able to lift a pan.  I almost never leave my house on these days.  Most people probably don’t even know that I have them.  I’m often in so much pain I can barely put a sentence together.  These can happen when I’ve missed a dose of my meds or just out of the blue for no reason I can find.  
  • Thankfully even on bad days I can usually type well.  I cannot type on a keyboard that has ‘soft’ keys, but as long as the keys have enough spring to hold my fingers up when I’m not pressing down, and to push my finger back up after I’m done pressing, I do not have trouble.  The exception to this is when that nerve in my arm is trapped – then I can only type left-handed, and the effort of moving around the keyboard with my left hand tires it out very quickly.
  • In an effort to not overuse my nerves I opt on the side of caution as often as possible.  If there’s even a chance I may have to walk far or stand for very long I take my wheelchair.  If I know I’ll have to be on my legs much I’ll wear my leg braces.  If I know I’ll be sitting for a long time I take my wheelchair (my chair is custom-fit to keep my legs and feet at angles that lessen the spasming and pain). 
  • Because my arm is messed up now I cannot use a cane as much as I used to, and I almost never can use my crutches.  I have a left-handed cane (I have to use canes with special handles or my wrists get too stressed) but have trouble using it much because I’m not coordinated with my left hand lol. 
  • Between the meds I take and the work my body is doing constantly attacking and/or repairing my nerves I require a lot of sleep.  I probably average 10 hours/night but when I’ve overused my nerves sometimes I’ll sleep 2 days straight.  This isn’t really predictable, though I know if I overdue it I’ll have to sleep a lot the next day or two, sometimes I’ll sleep for 16 hours with no clue why (I just wasn’t capable of waking myself up).
  • Sometimes I will "crash" in the middle of doing something.  Usually this happens if I’ve ‘overdone it’ but sometimes it’s completely random.  I have fallen asleep at work, in the shower, at friends’ houses, at dinner, etc.  It doesn’t happen very often, and is usually accompanied by a slight fever.  I can recognize it’s coming and have just enough time to stop what I’m doing and go lay down (or pull over to the side of the road if I’m driving).  Thankfully I usually can wake myself up after 15 minutes or so when this happens, but it’s very awkward if anyone else is around.
  • I know my chair is an inconvenience for other people.  Most people I know do not have wheelchair accessible houses, and riding with others is a real hassle if I have to take a chair along.  For this reason I generally avoid doing anything unless I know I’m having a really good day and can afford to walk and/or use my cane, I know my pain levels are low enough that I can be sociable, and I’m well-rested enough that I probably won’t "crash".

So there’s way more than you ever really wanted to know.  And now you see why I always try to give a short answer and you’re left wondering what’s really wrong anyway.


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