I always assumed — as it turns out incorrectly (the assumption thing, I guess) — my disability would be stable (you know, aside for those first couple of years where I was convinced my paralysis was just a hiccup).  I figured, I broke my neck, I’d get back what I’d get back and that would be it.  Science, might one day move things along, and I’d certainly bust my ass and make the most of what I had through strengthening, but I was pretty much under the impression my paralysis was locked in.

I never in a million years imagined — despite many spills out of my chair and wipeouts on the slopes — that things could actually go backwards; that it was possible to lose all I’d gained without, like, you know, breaking my neck again.  Because, really, c’mon, what kind of crap would that be?

Now admittedly, I was a bit “focused” back in the day when I broke my neck (some might call it stubborn) — still am, I suppose — and my lack of foresight, and grasp of my own mortality probably rivaled that of your average house cat, but even still, it wasn’t like I was warned about said possibility and flippantly disregarded it as somebody else’s fate.  No, because even as things were changing, it never crossed my mind they actually could… or would.

And while this last decade has been all about change (when isn’t it, really), and I’ve become quite adept at handling it (even relishing it, on some level), I’m not going to lie; this slow, perplexing loss of sensation, mobility and range of motion (not to mention the silly pain) is proving to be quite the bitch.  And as strange as it may sound, I almost feel if it were to happen over night it might be easier to wrap my head around.  Because, quite frankly, there’s a reason conventional wisdom says to just grab the Band-Aid and rip — it’s painful, but at least it’s not drawn out.

(Note to whom it may concern; if you have any control in this matter — God, gods, Cosmos, existence, what have you, you know who you are — sit back down and relax, I’m not trying to tempt the fates here, I’m just saying.)

Look, losing the use of my arms terrifies me, I’ve got no problem admitting that. I’m a high enough quad as it is. I’m able to eat by myself, write, do my graphic design work, push my chair, etc., I don’t know anything different. But like it or not, change is coming down the pipe… for all of us. Sometimes it’s welcomed, sometimes not so much. And while it’s been tempting to label this particular change as bad, the truth is, I know better.

I’d hoped surgery would arrest this problem, but thus far — for whatever reason —  it hasn’t. I was cautioned from the beginning things could possibly get worse before they got better, and perhaps this is the case, I don’t know. I certainly hope so.  But either way, life will go on. Differently, yes, but for certain just as miraculously.

Given this, it’s impossible to reflect back on 2009 and not reflect on what it all will mean for the future.  Large elephants, I guess, have a way of demanding that kind of attention.  But that’s just it — the future — despite how things may appear now — and they do appear a bit sketchy — I don’t know what the future holds anymore than I did back in 1980 when I broke my neck, which arguably seemed like a bad thing at the time and turned out to be quite the opposite.

So sure, the word for 2009 will probably go down as being syringomyelia, — in my life, anyway — but that just means the word for 2010 will probably be adjustment.

And I can certainly hang with that.


7 comments on “2009: the elephant in the room

  • To me, this rings with the skull-grinding clarity of steeple bells from a foot away. For my own part, I can’t even discuss the rotting-from-within without losing my composure. Part of the difficulty is the lack of info — there’s no knowing what will go next. You know there will be losses, but each individual loss is a sudden surprise. “Adjustment” indeed, with no rehearsal, no lube, and no net.

    It’s so hard not to despair at times. It’s impossible to be frank about it, because, as with any chronic debilitating condition, I’m in it for the long haul and must not scare off my friends — I need them too badly to call on them often. Especially with an invisible disability. I’ve had former friends write me off because they couldn’t see anything wrong so I must be a self-serving bitch out for a free ride. Me.

    Sorry, I didn’t mean to turn this towards myself. I’m not eloquent right now — in fact, I’m barely coherent — but the tears that are pouring down my face are overdue. It’s so rare not to feel utterly alone with this awful reality.

    I don’t have much hope, but you bring me a whisper of peace, my brother. With the silent scream that so often fills my head, that is a gift indeed.

  • I struggled mightily with this post, not knowing whether or not it was something I wanted to share. In general, I tend to keep my worries, frustrations and — for lack of a better way to put it — negativity on the inside, preferring instead to show my strength and optimism. The turn of the new year was a challenging one for all the reasons I’ve written above, but I found that writing it down — sharing it as I did — just being able to vocally say, “WTF?”, was immensely cathartic.

    If anything was to confirm that what I had to say was valuable, it was your comment and your willingness to openly share your pain and your fear — not just the physical, but the emotional and what that means to you and your relationship with others.

    For this I thank you from the bottom of my heart and hope that, in some small way, it lightened your load just a little.

  • When the chains bite too deep, you are one of the few who can always loosen them a little.

    It’s a bit of a relief to read of your struggle in this posting. I respect your intelligence hugely, and I know you have benevolent brain chemistry; moreover, I’m a huge fan of constructive denial as a coping mechanism; but I’ve sometimes wondered.

    This piece was a whisper of peace (ar ar) not because pain and appropriate fear are so delightful. It reassured me that you’re not kidding yourself, it opened your life in a way that shows you to be even stronger than we already knew (the paradox of honest vulnerability!) and it made me feel stronger by releasing the burden of solitude.

    Really, Tony, you improve my world just by being in it. The fewer distractions I have (what a euphemism! Hah!) the more my loved ones matter. But even so, there are too few living buddhas in my world; as such, you are unique :-).

    Keep taking good care of yourself. Little as I see you, I don’t think I can do without you. So yes, this posting does lighten my burden a little. 🙂

  • Tony

    Tried to post a comment a few days ago. Don’t think it went through.

    Not going offer any platitudes here. I do remember something Suzuki-roshi once said, that life is like getting on a boat that is going to sail out to sea and sink.

    This of course is horrifying to most Americans, and that surely includes moi.

    But lately I’ve been having this experience where I’m suddenly stopped in my day-to-day and realize, I’m going to die.

    The voice is always friendly (unlike other voices which I won’t talk about), and almost—nonchalant. And real.

    And I think how I have reality flipped around, where what I think is real is going to pass, and what I’m frightened of and think will never happen is actually what/who I am.

    The Tibetans believe each time we die we have another chance to merge with what is real. Most of us are too scared and eventually fall back to earth. The trick is to work toward that merging while we’re still alive.

    The voice also tells me I got about 30 years. Not forty or fifty. I guess I’m not a vampire, or Tom Cruise in Vanilla Sky.

    And then I get another chance— at reality.

    Be well, bro.

  • IN South Africa we have a saying EISH it means ( i have nothing to say that conveys how I feel but I want to say something) Well eish!

    So this SyringoM thing is a bummer, please correct me if I’m wrong?
    1. No cure
    2. No way of knowing where it will go next
    3. A life of pain meds
    3. The loss of mobility (with of without surgery)?

    This is just what I read on the internet, but I am lucky I have very few syptoms, I am a cylclist and I run and swim and have just stated with triathlons.

    So now while we still don’t know what to do I mannage the pain and I don’t excercise for fear of straining this syrinx.

    You on the other hand souns like you were much braver than I a now? Any tips?

    The syringomyaelia was cause by a 18 year old back injury flaring up now because of all the excercise.

    I would like to understand this thing so that I can fight it.

    Thanx for your cnadid insights

  • Well, it’s certainly an appropriate expression and one I’ve used many times over the last year despite not knowing its origin. So in recognition of that geographical linguistic heads up, let me just say thanks and also add an eish of my own.

    Unfortunately, I have no easy answers, your bullet points — thus far based on my experience — are fairly accurate. Reading them thusly only seems to reinforce the trickiness of this whole thing. So much is not known about this condition we call syringomyelia.

    As you’ve probably gathered, like yourself, I’m an athlete, and maybe, in some ways — though I don’t know for sure — that makes this whole thing seem more challenging. It seems to exaggerate the changes that are slowly taking place simply because we tend to be very in tune with our bodies in terms of charting our progress through workouts and athletic goals. Going backwards — on this “superficial” level — is not what we’re looking for over the short or long run.

    But truthfully, athlete or not, these kinds of changes are difficult no matter what — nobody wants to deal with a degenerative condition — but where I want to shine some light, and in doing so reinforce the positive, is to say that because you’re an athlete your strength and ability to recover will be tremendous assets from here on out. It’s been true for me, even despite the apparent difficulties.

    As far as any specific tips, I’d say this first and foremost; find a good neurosurgeon who is experienced with this sort of thing and don’t settle for one opinion on treatment — they do vary, even if slightly. Otherwise, I’m kind of winging it. I’m exercising as much as my body will allow — sometimes it’s painful, sometimes not as much — as I feel it’s important to keep my conditioning up. Is this the right thing to do? I don’t know, but it feels right. Pain-wise, well, I don’t really take pain medication — save some over-the-counter pain reliever from time to time — as I don’t like the side effects and don’t feel they really work.

    I know you’re worried about your syrinx getting worse if you exercise, and as far as I’ve come to understand — from my research and speaking with doctors — there is no definitive answer on this one. As you read, I continued to ski and work out long after my diagnosis. Did it have an affect? Who knows? So go with your gut on this one, and pay close attention to how you feel. I’m definitely not an expert.

    As you also read, at my December postsurgical follow-up, my syrinx is subtly smaller. That’s good. I have another MRI and follow-up in March, and the doctors said things are usually significantly better at that point. We’ll see. Either way, I don’t regret having surgery. It was tough, to be sure, but based on all I knew about my condition and what would likely happen in the future, I felt comfortable rolling the dice and going for it.

    I hope whatever you decide to do — surgery or no — you feel comfortable with it and stay positive and strong. The journey and fight can be tough but it can be transcended.

    And, please, don’t hesitate to contact me with any specific questions you might have… I’m more than happy to help where I can. Peace.

  • Tony, I never kept up with your progress. I did what so many of us do with friends both old and new. We get busy, we forget them.

    I forgot you and that I don’t know you well isn’t a reason.

    I’m glad I found you again today. I saw Susan Skilling had a “status” note with your name against it on fb.

    What can I give to you? What gift to I have that will help you on your way? My hand. My heart. I’m not going to forget again.


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