What's Wrong with this Picture?

I'm supposed to be an advocate for "Healing through Writing," but in fact I'm not just an advocate, I'm the main driving force behind it (why does this sound like the commercial for the GLH hair loss treatment, "Not only am I the president but I'm also a member..."). But what is it exactly?  It started out as a simple idea.  It's like because I write, and I feel like this works for me as my main coping or therapeutic mechanism, I wanted to share that with the ataxia community.  So I started this group which meets at the NAF conventions for people to share a piece of writing that they brought in.  But besides the title of this "Writer's" group, I would like the 'it' to also refer to a movement for people to practice, if they choose to.   Or, let's say they don't really write regularly, they might think of "Healing through Writing" as just a once a year thing and that's all they write for, is to have something to share at this group.  If so, that's fine too.

I have discovered that something is wrong because I haven't been writing regularly so my "Healing" has sort of been on hold.  I've really been struggling lately...doing pretty much anything.  I feel like my ataxia has really taken a turn for the worst as far as its rate of progression and current symptoms go.  Writing is very difficult, and I don't mean just writing with a pen or pencil, that practice has been long gone for me for about the last decade.  I mean the mental blockade of having a clear enough head to stay positive and to write things that I'd be comfortable sharing (as if everything I write has to be shared).  Everything is bogged down by a heavy veil of depression, lonliness and helplessness.  Sure there is a little bit of physical movement involved in my writing (with voice recognition, that is) e.g.getting my headset turned on and put on my head the right way and just a few simple clicks (I say simple but even that has become daunting) with my mouse and I'm ready to go.  But I guess this is all easier said than done because then I have to keep my composure to be able to speak clearly and consistently to dictate my text to the computer.

Back to the main issue, which is why I haven't felt like healing, through writing.  The main thing, I've felt depressed.  Why have I felt depressed? you may ask.  Because for the first time in my life I have really been thinking about my own mortality. I have noticed that the neuropathy has crept up into my fingers and hands, and my vision is really terrible.  But what really brought it to a head was, recently I got a new wheelchair, I came to this realization, well I don't know if you can even call it a realization because I have no way of proving it, but for lack of a better term that's what I'm going to call it.  So anyway, I came to this realization that this new wheelchair will be the last new chair that I get.  Now, if you don't know, Medicare allows for qualified people to get a new chair every 5 years.  Hence I'm saying that I'm not going to make it another 5 years (WHEW! That was hard to get out).  Having said that, people are welcome to berate me all they want but I can’t help the way I feel.

What I can do though is to do what I’ve done for the last half of my life, FIGHT.  I wasn’t saying that I was going to just give up (if you don’t know me, well, that just ain’t how I roll)!  I’m still going to go out, speak up, ask questions, learn things, demonstrate, try to push people’s buttons, still going to eat, sleep, welcome company, listen to music, play poker, shit, jerk-off, and - yes - write, no matter how difficult it becomes or how many obstacles get in my way.  

So there...  All I have now are a couple pieces of writing that I am planning on taking with me to the 2017 NAF conference in San Antonio.  The first is a poem I wrote at the end of July last year after going to FA Woodstock (which is one of two major trips that I try to take every year).  The other is a prose-type piece that I wrote just a couple months ago to take to a local writer's group that I attend:  

FAers

*Refers to someone diagnosed with FA or Friedreich’s ataxia,

a rare degenerative, neuromuscular disease affecting one’s

balance, coordination and motor skills.

They don't often stumble right out

of the gate, the symptoms of FA usually wait

to take the reins 'til the first turn into one's

tumultuous teens (as if adolescence isn’t

awkward enough).  Once the track becomes

battered it’s a constant battle of endurance

and adaptation. The prospect of winning the race

fades, replaced by the glimmering hope of

staying apace. Perhaps the race is rigged: sometimes

sloppy, sometimes rocky, always riddled with

obstacles.  At least now we know we have hordes

of fans in the grandstands cheering us on and more

than ever that we're not traipsing this treacherous

trek alone.  In the winner's circle awaits The cure.

 Abating

(Def.)  to make or become less in force or intensity; decrease or diminish

For the past decade or so it seems as if my symptoms brought on by Friedreich’s ataxia have plateaued. Some of my most viable abilities (walking, writing, seeing, and speaking) have already been compromised to the point of non-use or I have gotten used to having to use adaptive equipment to make them functional.  Such as, I use a wheelchair, a name stamp (all I write, with a pen or pencil, is my name) and my voice recognition program to type, I have glasses and annual eye exams so I usually get new glasses every year.  I speak aloud to my computer and whenever I do a public poetry recital, these keep my vocalization audible.  Sure there are other senses besides the aforementioned that are in decline but for whatever reason I hardly ever notice my lack of feeling or the decline in my hearing.  But in 2016, it’s like all the deterioration came back full circle.  

Now I notice the feeling/movement in my hands is so afflicted with neuropathy that as I crawl out of bed to transfer into my chair, I’ll reach up for my trapeze rings as my caregiver scoots me back.  I have a hard time keeping my grip but finally make it into my chair.  Within minutes my fingers turn cold.  Then once I’m put in front of my desk, I have a hard time navigating my computer and sipping my coffee without some dripping.  I’ve become so limited with what I attempt to do with my hands that as soon as I handle my business, I’ll often have my caregiver come in to help me type or work the computer.  And I’ll often get whoever’s here to rub my hands with lotion and try to stretch my fingers back, because (and I’m extremely terrified by this) my hands, my right hand especially, are starting to ball up.

So what does all this mean?  It shows that FA is a degenerative disease and, even though the progression is subtle, it’s happening the whole time.  In the past six to nine months the neuropathic properties have really become evident and affect every aspect of my life.  But life goes on, so I must continue to adapt and get used to people helping me do things that, in the past, I could do for myself.  Adaptability is the name of the game.