A year ago today I said goodbye to a very radiant being; my eternally brilliant, beautiful, goofy, transcendent service dog Shadow. Sigh.

I’ve written at length about her on this blog, but I believe this particular slideshow says everything so much better. Even still, it seems slight.

She was without a doubt one of the most vibrant, alive spirits I’ve never had the pleasure of knowing. Not a day goes by that I don’t think of her, miss her or am forever grateful for the years I was able to spend with her by my side.

A teacher, a companion, a friend, a buddha, and the loudest, most steadfast furry creature of love. She is missed. She is loved. She is a gift.

Enough said.

Life is good. Life is very very good. I am blessed.

A Slideshow Celebrating the Memory of my Golden Retriever Service Dog from Tony Schmiesing on Vimeo.

pau.

It’s begun… sort of. After an exceptionally clingy indian summer (which, for those keeping meteorological score at home, will mean another 60° plus sunny week ahead; a very odd, shorts wearing start to December), a couple of diminutive, fast-moving storms managed to sneak in, drop a little snow and the lifts of Tahoe began firing up.

Now whether or not any of that white stuff will stick around through the coming week is anyone’s guess, but the mere whiff of it has my adrenaline bubbling. Couple that with the arrival of my new bi-ski, and the chemical agitation in my bloodstream is a whole lot easier to relate to.

You get me now, don’t you?

Rocky Mountain High

As I alluded to in my previous post, I recently received a grant from the High Fives Foundation to have the seat/bucket of my ski orthotically modified by Ride Designs in Aspen, and at the beginning of November I flew out there for a week to have this done.

Having dealt with chronic pressure sore issues for just about all of my disabled life, and the pursuit of products, theories and “experts” that could solve/address these issues, what I experienced/participated in at Ride was a miraculous life changer. A combination of technology, engineering, philosophy, experience and kindness (yes, this matters too, as it translates to listening and empathy), I realized this system could go beyond my ski and onto my everyday acoustic and electric chairs. A very exciting thought.

But perhaps my biggest “I need to wrap my head around this” moment (aside from the fact that sitting in my completed ski was now more comfortable than my everyday chair) came when I first saw what I would actually be sitting on/in: a seat shell made of molded pre-expanded polystyrene (EPS) (okay, it’s a proprietary, supersecret type of EPS, the production of which I was asked not to even film, but still, for the sake of description, it looks a lot like the stuff that goes into filling 1970s beanbag chairs or what makes up those cheap styrofoam ice chests).

Now in the past, and currently (until this trip, anyway), the conventional wisdom and attack to solving the pressure issues of my extremely bony prominences (I’ve got ischial tuberosities like samurai swords) has always been to do it with the softest, most forgiving, flexible material possible. And this seems intuitively correct. Tremendously so. And for the most part it is — and even somewhat effective. But “somewhat effective” is just that, somewhat, and not the bar I’m striving for.

And while the “supersecret” EPS is indeed flexible, it’s magic, if you will, is more a twofold combination of malleability and how that malleability allows the designer to shape/create a seat that both hugs the contours of the body while offloading pressure from higher pressure areas to other areas that can handle it.*

And this is where the expertise, experience and creativity of the designer comes to play, because as functional as this material is on its own, it’s only the foundation of what makes this seating system so unique; time, study, shaping and reshaping are necessary to build the most effective offloading environment for an individual’s own particular needs (and we know, boys and girls, just how extreme mine are!).

So, after the initial mold/impression of my butt was made, and the seat was shaped to the shell of the ski, I literally spent the majority of my time in Ride’s warehouse sitting in my ski in order to get an accurate assessment of how the seat was performing and where, if any, redness was occurring – not just on my problem areas, but the areas where the pressure was being offloaded to as well; a delicate dance of nuance, to be sure, especially given that I was tightly strapped in, which adds even more back and downward pressure to the mix.

By the end of the week, after this back-and-forth of getting in and out of the ski, checking my skin, tweaking the shape of the cushion (adding or subtracting foam as needed), I was at last sitting comfortably for 3 1/2 hours with next to no redness on my problem areas whatsoever (and this was without any pressure relief)!

Milagros

I used the word “miraculous” above and I want to come back to that. For those who know me, you know how much of my life is dictated by the condition of my bony ass i.e. how much time can I spend on it in my chair before I need to stay off of it for a protracted amount of time. There’s no mystery as to why the first thing anybody asks me when catching up is, “How’s your ass?” It’s a barometer by which my day to day activities can be determined. I don’t see it is good or bad anymore, simply the parameters by which I live.

At one point at Ride, while looking at my ski, it hit me very deeply just how game changing, next level s**t all of this was. Certainly my skiing experience was about to change – that was obvious – and not just for the simple fact I could stay on the mountain longer or that my performance level would now be unbounded (I can only imagine how cool this will be), but because of everything that led up to that moment – everything.

The “miraculous” was in the fact that I could ski at all, that I had friends and family who shared in my stoke and were behind me to make it happen, that this technology exists, and that somebody was creative, imaginative and skilled enough to apply it in an area that is so critical/important to my life, that a foundation of people — who didn’t know me personally but understood my passion — gave so generously, that people supported the foundation, and that I live, really live, to feel all of this so deeply, and am able to resonate with an eternal gratitude.

The snow has yet to truly fall in the Sierras, sure, and I’ve yet to make a single carve on my new ski, but as far as I’m concerned the celebration of miracles and wonders has begun!

High Fives Foundation Winter Empowerment introduction video for Tony Schmiesing from Tony Schmiesing on Vimeo.

pau.

*The material is also water resistant and performs exceptionally well in the cold. Hey, it’s nice to maintain a warm butt.

Since my accident, I’ve had this unshakable desire to get vert again, to recapture that weightless feeling I got from surfing or skating ramps and pools. And while I’ve done the requisite imaginary off-the-top carve on slight banks in my wheelchair, all great imagination aside, it’s not quite the same thing, and certainly not something I’d try on anything steeper than 20°, as the center of gravity in my chair, especially given my height and lack of muscle control, is too high.

So the question that keeps bouncing back then is; how to go about it? Part of the problem – somewhat significantly, actually – is my level of injury and the anatomical disadvantages I have by not being able to use my trunk or back muscles for balance and support. This is critical, because without being able to counter balance my body against the forces of gravity, I’d ultimately be pulled down by it. Which, if the surface waiting to greet me is cement (as in a skate park), wouldn’t be a whole lot of fun.

So I’ve always seen my success in this endeavor as being one dependent on equipment and design. The only way it would work with my disability is having something with a stable low center of gravity that I was tightly strapped into.

And then last winter it hit me… a bi-ski… the Superpipe. That’s how I’d do it – I’d charge the Superpipe at Northstar in a bi-ski! I was surprised the idea hadn’t come to me before, I mean it seemed so obvious (to me anyway), but then I suppose that’s the way ideas are; they come when they come and no sooner. But seriously, it couldn’t be more perfect; it’s the right vert terrain coupled with exactly the kind of equipment I was looking for. And it was all, well, right under my ass!

Now I don’t know if any quad with a level of injury as high as mine (let alone not in their teens or 20s) has attempted something like this before, and it may be a bit out there as far as ideas go, but I’m psyched to give it a shot and see what happens.

I’ve been doing this bi-ski thing for almost 4 years now and I have it pretty dialed in. If I’m paired with the right ski partner on the teathers, someone up to the task to push things, I feel stoked and compelled to see where my limits are and blow past them every time I’m on the mountain.

Because of this, I’ve developed a good understanding of how my equipment should perform.  Up to this point, however, the skis I’ve been renting/using, while certainly functional, are simply that, functional, and less than ideal where my own particular needs and skills are concerned.  Attempting the Superpipe in this equipment or skiing another season is probably doable, but I’m not shooting for “functional” or “doable” – I’m going beyond that.

So back into the world of customization I go.  I’ve decided to get my own ski, tweak it as much as possible for performance and have Ride, an orthotic seating company out of Colorado that specializes in adaptive sports equipment, fabricate me a customized bucketseat and restraint system which would be both more secure and pressure sore resistant.  Being the tall, skinny dude that I am, not to mention the specifics of my spinal cord injury, the importance of these two things can’t be overstated; it takes me around 45 min. just to deal with both to get properly situated in the ski.

And though it’s a critical 45 min., to be sure, involving a lot of Tetris-like cushion movement/placement to try to minimize the possibility of pressure sores while in turn hunting down straps and restraints to keep my ass securely back and in the ski (a semi-futile attempt at best) on those steeper runs I like to crush, it’s still 45 min. that’s subtracted from my time on the mountain. And when I’m only able to ski 2 1/2 hours to begin with, before the seriousness of pressure sores start to rear their ugly heads, that’s a significant chunk of time.

In the same way that long-term wheelchair users — especially high-level quadriplegics — need customized wheelchairs and seating, the same is definitely true of adaptive sports equipment; maybe more so given what’s being asked of the equipment.  A modified seating system alone would be a bow-down-before-the-mountain-snow-gods-in-reverence-and-gratitude kind of change my skiing experience has been jonesing for.

But like I said, I’d also like to make tweaks to the performance side of the ski as well. But how many I’ll be able to make to the model I plan on purchasing, we’ll have to see. Probably not many given the design and construction of these things, but it’s a good place to start.

Ultimately – meaning soon, I hope – I plan on co-designing/building a bi-ski from the ground up. To take the general principles/mechanics that already work and use them as a jumping off point to create something more performance oriented for skiers with the similar challenges I encounter.

But like all things customized – especially those things which relate to paralysis; wheelchairs, orthotics, medical supplies, travel, technology, sports – the costs can be prohibitive (and let’s face it, insurance companies ain’t about to put up for a bi-ski anytime soon. Although, they probably should given the amount of healthy stoke that comes along at no extra charge, not to mention the benefits of intoxicating mountain air).

And while I deeply understand that money will always work itself out one way or another if we just let go of expectations and perceived outcomes of what life might be like with or without it, I’m also intimately aware of the need for prioritization of it in my own life. Which is to say, none of the cool stuff I’m talking about above would be possible if it weren’t for the blessed assistance of others.

To this end, in April I received a grant from the Challenged Athletes Foundation in San Diego that will partially pay for a bi-ski and just last week I received word that the High Fives Foundation in Tahoe will be giving me a grant for the very critical, yet very expensive, customized seating and restraint system from Ride, as well as assist me in making the Superpipe at Northstar this season a crazy dream-come-true reality.

To say I’m deeply grateful and moved by the gestures these two organizations have shown me, not just financially but by ideologically supporting something that’s so dear to my soul, would be an understatement and no doubt come up ridiculously short in expressing just how to-the-core moved I am. Nevertheless, this is the means of expression I have and so I’ll say it again; I’m deeply deeply grateful and moved!

But I’d also like to thank all the folks who contributed to these organizations as well, because as a part of a nonprofit myself, I understand that without their generosity these life changing organizations (and that’s not hyperbole) wouldn’t be able to support the athletes that they do.

And so there you have it, I hope I wasn’t being too cryptic in my last post about the specialness of this upcoming ski season, but you know me, I like to live as much in the moment as I can and let the future work itself out. Still, I’d be a liar if I didn’t say I feel like I just woke up to a bluebird sunshiny day with 2 feet of fresh powder awaiting me on the mountain.

Let it snow!

Oh, and please think about checking out the foundations I mentioned. Mahalo.

High Fives Foundation

Challenged Athletes Foundation

pau.

September is here and with it comes the symbolic end to summer and the arrival of shorter, cooler days. And while for us here in the San Francisco Bay Area, the summer of 2011 was all about the cooler days, and probably won’t be lodged in anyone’s memory as being particularly summer-like, we do have the consolation that our real summer – indian summer – has only just begun and thus begins another opportunity to clock in some shorts time. Now whether or not this happens this year is anyone’s guess – it’s been that wacky of a year — but however it plays out, I’m good either way.

Don’t get me wrong, I’d love it to be, say, a constant 80° for the next few months —  I’m a quadriplegic after all and my DNA’s not that far from an iguana’s (I function a whole lot better if I’ve been able to sun myself on a warm rock for a few hours to get my blood warm) — but just the same, over the last 5 years, September, and it’s symbolic designation as the end of summer, has taken on some additional symbolism for me: the not too far off arrival of winter storms and the opening of ski season!

But unlike years previous, the ski season of 2011/2012 (assuming my agenda lines up with life’s) is looking to be pretty special. Among other things, it follows an off-season two years ago where my spinal surgery kept me off the mountain and a truncated trial season last year in which I was kind of feeling things out to see how my neck would handle the bump and grind of bi-skiing. Both of those, different as they were — the first being a lesson in detachment and the second a celebration of gratitude — are reason enough to be stoked about what might lay ahead.

In the meantime, I’ll keep l-i-v-i-n in the moment with the understanding that Sierra snow is likely on the way!

… to be continued.

pau.

“Are you OCD?”, My friend D asked, as she pushed my remote 2 cm more to the left.
“What?”, I said. “No.”
“Well, you’re kind of particular, aren’t you?”
“Dude, I can’t believe you’re asking me that. Seriously. You’ve known me, what, 10 years? Have you always thought this?”
“I don’t know, I guess. You’re just so… precise”.

OCD? Really?

And so began my explanation as to why the remote needed to be moved 2 more cm to the left; because my tongue, long and dexterous as it is (and believe me, it’s taken many years to get it that way – the dexterous part, not the length, though maybe that too), wouldn’t be able to reach the upper keypad. Hello.

And that’s only part of it. But I suppose before I go any further with the significance of those particular 2 cm, I should set the scene – the back story, if you will – so you’ll have a better understanding as to why it’s not an example of OCD, but rather a simple situation of high quad ergonomics.

To begin with, the modern world is not designed with quadriplegics in mind. Sure, some things are better than others, by intention or chance, but by and large it’s a world shaped for the upwardly ambulatory and dexterously proficient i.e. the walkers and finger users.

If I want to function/participate in this world I need to be creative and diligent, establish a new feng shui, and reshape it to fit my own unique needs. Mostly it’s with nuanced, finely focused tweaks, while other times less so, but it’s always with the understanding that customization could/will make a difference. Which is to say, stock stuff probably ain’t going to cut it.

Now, this is nowhere more true than when I’m in bed, where D asked the question, and where, like a NASA astronaut in a single man space capsule, I’ve shaped my environment down to the millimeter in order to maximize my independence and functionality.

The capsule’s layout:

So on my back, to the right of my head, are two captain’s cups filled with water and a bendable straw, they are positioned in a way so that I can not only reach both for drinking but to see my MacBook Pro screen between them — too high or low in either direction and my vision is obscured. On the left side of my head are my phone clicker (I lean on it to answer calls), my cell phone, my front door opener and a couple of remotes for controlling my AV system. All of these need to be positioned precisely, not a centimeter off in either direction, or I’m unable to reach them with my Gene Simmons like tongue.

And that’s only the half of it.

Above me, attached to a swingout arm extended from the wall, is a digital projector which points at the ceiling, allowing for a more comfortable experience while writing or using the computer than turning my head to the side. There’s a microphone above my face for dictating text and working on music, and I’ve also figured out a way to fold my blankets so that I can pull them up or down or get my arms in and out as needed.

All of this, of course, is rendered mute if, well, you know, I have company, but you get the picture. From a stationary spot on my back — to continue with the metaphore — I can reach all the necessary buttons, switches and levers for a successful solo moon landing or safe reentry back into our atmosphere. In other words, it’s a well thought out, measured system, developed over years of trail and error, that allows me the greatest independence possible.

So why have I felt compelled to explain all this? Well, first just let me say it’s not an ego thing, because whether or not my specificity is mistaken for neuroses, really doesn’t matter. No, I’ve felt compelled to explain all this because it speaks to the important subject of awareness, and how our own particular awareness (if there really is such a thing) contributes to our myopic perception of the world around us and how we might construct it.

Don’t get me wrong, I’d love it if the able-bodied majority around me was more aware of my own particular “needs” as a quadriplegic — that would be great and a whole lot easier — but I don’t expect them to be. And I certainly don’t expect the world to be shaped or perceived in the way a quadriplegic does …at least not yet anyway.

No, the way I see it, until awareness and consciousness absorb myopic perception and action — including my own — a little education, persuasion, ingenuity, duct tape and, yeah, perhaps a little specificity on my part will have to get ‘er done.

pau.

The day Shadow arrived, she was a loaded spring — all tongue and a wagging red body and a vision to behold.  I was in a MFA program at the time and over the next few weeks we not only bonded, but she gracefully slid into her life as the only dog in film school. Almost overnight, I went from being, Tony, the guy with Shadow, to Shadow, the dog with the guy, Tony.  A fact, which for some — with a larger ego than mine — might’ve been off putting, but for me, part and parcel with having a companion with four legs and a tail.

To say Shadow has been an invaluable part of my life would be an understatement.  And while I would love to share with you every little thing she did for me (as I’m that inspired) — I think one specific moment can encapsulate what we were all about.

Coming home at 2:00 a.m., after one of my late-night sessions in the school editing bays, I dropped one of my portable hard drives on the sidewalk.  Typically this would’ve been a huge problem, and not just because I lacked the ability to pick it up, but because the material on that drive (my film at the time) was far too valuable to leave behind in order to seek assistance — even at 2 a.m..

Up to that point, Shadow had been a huge help; picking up papers, pens and other odd items, but she’d yet to grapple with something that awkwardly shaped or heavy. But the moment that hard drive hit the ground her ears went up and she waited for my command.  It took her a few minutes to figure out how best to go about the difficult task I’d requested, but they are some of the most beautiful 10 minutes I’ve ever witnessed.

Watching her tail wag and her eyes brighten as she attempted to problem solve — pushing the hard drive into various positions with her paws and snout — made me swell with joy.  Having at last placed it back onto my lap, I don’t think I’ve ever seen a dog look so proud and happy.  And I was right there with her as she barked and spun in tight circles. And though it probably wasn’t a suitable volume for the suburbs at 2 AM, I didn’t care, and I laughed and threw heartfelt praise upon her. Because what could’ve been a major problem, ended up being nothing more than a little hiccup and a slight delay on my ride home.

But for me, Shadow was so much more than the sum of what she could do for me.  In the same way I was charmed by her efforts in picking up the hard drive, I was equally, if not more so, moved by her chameleonic ability to fit into any situation.  At times it was with disarming affection and goofiness, and other times with a nonchalance that was nothing short of mystifying.  And it was in these moments my heart strained to the point of bursting.  It was in these moments where you found the true essence of Shadow.

When I first came back to the Bay Area after graduate school, I was concerned that BART (our subway system) might be a problem for her, so I contacted the local field trainer and asked if she could come along on our first ride just in case there were any issues. But Shadow — in her typical casual manner — simply laid down beside me and relaxed as if she’d done it a thousand times before, and it was the most normal thing in the world (which I guess it is).  But like I said, nonchalance.

To this day, I’m amazed how she slept through the rush-hour crowd coming back from San Francisco.  She may have opened her eyes when somebody stepped over her, but not out of concern for being stepped on, but rather to see who boarded the train and might be charmed into giving her a belly scratch.

Without hyperbole it’s safe to say Shadow was an extension of my arms and hands, and as such there’s no value that could be placed upon her service.  Because after all, what value can you place on your arms and hands?

But as I said, Shadow was so much more than what she could do for me. She was a friend, a family member and above all that, she’s a miracle.  In their short lives dogs give us so much — unconditionally and with devoted enthusiasm.  But as I saw Shadow age — and 17 was indeed aging (though she was a little old lady who could still run marathons) –I knew our time together would both change and come to an end. But this, I believe, is one of a dog’s final and greatest gifts – to see death not as a finality, but the continuation and essential part of this beautiful world. They are like stars who have gone supernova and whose light continues to shine brightly long after they are gone. *

*Excerpted from PAWS Quarterly 2009 (the tense has been changed).

The indescribable life

I’ve been close to a lot of dogs in my life, but until Shadow, I’d never had a service dog. And while I feel the above piece paints a pretty good picture of what our relationship was all about, I’m not sure it captures the depth of the bond between us. For starters, we were never separated; be it a five-star restaurant, a play, a stay in the hospital, sailing, a plane flight or an underground hip-hop show in a warehouse, she was always with me.

Trying to describe what this means in terms of a connection – unless you’ve been through it – is nearly impossible. Even now, after nearly 16 years, it’s difficult to wrap my head around – it’s a huge chunk of my life.

Shadow’s entire life – each phase – was a blessing to be part of and I’m forever grateful for the whole of it.  But these last six months have resonated with me in a way few things have in my entire life. Being around her at this time, as the wheels were starting to fall off; deafness, losing an eye, somewhat incontinent, stubborn, breath like, well, surprisingly no worse than it ever was, prone to seizures, was beautiful and profound.

This was the part of life so few want to see, acknowledge or embrace, even though it’s just as significant as any other part of life.  At her advanced age, with all her maladies, Shadow never once complained or wished things to be different, she lived entirely in the moment. And while, one might be tempted to argue that this is her nature as a dog, it doesn’t diminish its power as an example of how to live. No teacher, no priest, no guru can teach this, but if you were fortunate enough to spend any time with Shadow during this portion of her life, with her enormous heart, resilience, joie de vivre and lack of fictions about what life was “supposed” to be, then at the very least you probably got a glimmer of this understanding. For me, it’s been a time of unbelievable transcendence and I smile every time I think of her.

Shadow died – aside from meals of potato pancakes, packages of ham and a renaissance fair sized turkey leg – just as she lived, surrounded by friends and family who loved her with a fierce devotion. And though it was heartbreaking to say goodbye, the magnificence that was her life and the way I got to celebrate it in the end takes away a lot of the sting.

But no matter how at peace I am with the decision to let her go, a world without that sweet voice of hers is going to take some getting used to. Because those who knew Shadow, knew this about her –she was a talker — she had something to say about everything; if I wasn’t leaving the theater fast enough, people were dancing, she wanted me to hurry around the track so she could get home for lunch, or the most effusive, when she saw somebody she loved.

But as loud and as frequent as it was, I’d never have had it any other way. It was music — off key, a little abrasive and perhaps a bit demanding — but nevertheless, music.

Thanks to all who loved the red dog and were part of our lives. Love. Peace. Aloha.

pau.

I originally intended to get this posting up in March, but life — with all its ins and outs and eccentricities — had other plans.  And if by plans, you take my meaning to be my steadfast practice of the art of procrastination, well then, you’d probably be half right.  As to the other half of the equation, let’s just say, I’ve been framing and reframing this post in my mind for months now, wanting to get the tone and details just right.  And I think I have.

Results

For those of you who’ve been keeping score at home and following my adventures with syringomyelia, you may remember I’d scheduled a third follow-up appointment with my neurosurgeons for the beginning of March.  This appointment followed a third MRI and was scheduled at this time for two reasons: 1).  It was three months post the previous appointment and was enough time to show if any changes in the size of my syrinx had occurred.  And 2).  It was a checkpoint to see if I’d be given the green light to ski (it was still early enough in the season to get a few weeks in on the mountain).

And even though I’d like to say otherwise, diagnostically the appointment was a bit of a mixed bag.  Looking at the MRIs, and comparing them with those taken in December, it was clear there wasn’t the kind of reduction in the syrinx we’d hoped to see.  In fact, there was very little change at all — the shunt, for whatever reason, didn’t seem to be working.  My neurosurgeons hypothesized as to why this might be, suggesting either the shunt was clogged or its placement, in the dura surrounding my spinal cord, wasn’t allowing for proper drainage.

Either way, the only solution would be to open me up again and take a look.  If it was the former, they could possibly unclog it or put in a replacement. And if it was the latter, they could remove it from the dura and reroute it instead into my abdomen — a procedure requiring a much longer shunt and two surgeries.

Admittedly, this news was a bit disappointing. The doctors had said after my previos appointment they typically saw little change between the surgery and the first three months, but that the second three months often showed a marked improvement.  Just the same, I was prepared for whatever news I might receive that morning, and any disappointment I might’ve felt in those initial moments was nothing more than a brief wave washing over me.  I’d known all along the success rate of shunting wasn’t very high, and that my surgery was a play against the odds more than anything else.  As I said before, I knew if I didn’t do anything things would probably continue get worse, and if I had surgery, well, I knew there was a chance they could get better.

I suppose if one were to look at this as a “good news-bad news” scenario (which I don’t ordinarily do, but for the sake of illustration, I’ll do it here), getting these results would probably be considered the “bad news”. The flipside — the “good news”, if you will — was I was given the greenlight to ski again.

But here’s the rub of that latter news; in the end, I made the decision not to ski. Don’t get me wrong, I’d wanted to — even jonesed for it while I was recovering (an El  Nino winter was in full effect and there was lots of snow in dem Sierras) — but the the thing of it was, I was still in a lot of pain. This, plus the marginal/beat up shock systems on the bi-skis I used and I thought sking at that time might not be the most comfortable or enjoyable experience.

This was a tough one, and I seriously mulled it over — changing my mind hour by hour, day by day, right up until the last day of the season.  But in the end, it really felt — and this is as close as I come to a calculated decision when skiing is on the line — the right thing to do was to postpone my charging until the following season and see where I was then.

The last word (…or is it?)

It’s been six months since that appointment and I suppose the obvious question one might be asking is, “how am I doing now?”

First, let me just say, that despite the surgery’s lack of success, I don’t regret having it.  I alluded to it above, but I think it bears repeating here, I made my decision based on the best available advice I could get and a protracted amount of research.

Would I recommend the same surgery to someone else?  Probably.

As it stands now, there aren’t a lot of options out there for the treatment of syringomyelia, so perhaps even if the odds of success, via shunting, are slim, it might be a risk worth taking.  Hell, even if the odds of succeeding were as slim as 1 in 10, and you happen to be that 1, well, then surgery was the right thing to do, right?

Which leads me my potential follow-up surgery.  I say potential, because as of this moment I’m really not sure what I’m going to do.  What I know is that I want to travel and another surgery means at least another six months of recovery — minimum — and I don’t want to push  my travel plans back another year, especially when my future with syringomyelia is so uncertain.

But even without any travel plans I’m not so certain — if push came to shove — I’d want to schedule another surgery anyway.  Just the thought of the recovery period alone turns me off, and a longer shunt running through my body?  No thank you.

But let’s just say for the sake of argument I did make the decision to go through with it (in order to find out what was happening), part of me feels I’d just have them remove the malfunctioning shunt, staple me up again and be done with it, letting the syrinx do what it’s going to do.

But that’s just what I’m feeling now, I could change my mind.  I’ll do my traveling, get some more MRIs, consult with my doctors again, and reassess things at that time.  What I don’t know could fill oceans, but what I do know is I can’t make a decision about the future when it doesn’t even exist.  In other words, surgery isn’t out of the question, but I wouldn’t put good money on it.

The real

As to the physical side of things; there seems to be a continued decrease in sensation and mobility where the syrinx is most pronounced (most of my spine).  My left arm, as with before, is still losing function, but at what rate it’s difficult to say.  It may have slowed, which would be good, but like I said it’s difficult to tell.  I still have pain in my neck and shoulders — sometimes severe, sometimes not — which I choose not to manage with painkillers, going instead with something stronger — coffee (strange, I know).*

But the above are symptomatic facts only, and aren’t in any way mentioned as to suggest it’s how I define my situation. I simply lay these facts out there for comparison purposes only.  I’ve received a number of emails from other folks diagnosed with syringomyelia and, above all else, they’ve thanked me for both my candor and specificity where my own symptoms and experiences are concerned.

When I was doing my own research into syringomyelia, it was the personal stories, and the details contained therein, that meant the most to me.  I wanted to get some sense of what I could expect, symptomatically, before and after any surgery or with or without it.  As a quadriplegic, I knew my situation would be unique, but I also understood there would be some similarities. And it was these similarities that allowed me to be most prepared for the road that possibly lay ahead.

But whatever happens, I’m at complete peace with it.  And if that means I continue to lose function and sensation, at or above the level of my injury, so be it.  I understand that everything about this body — this life — will eventually go, and if it’s syringomyelia that accelerates this process, well, aren’t I a whole lot better off if I can accept it?

And so with that in mind, I’ll leave you with a final anecdote that I hope illustrates where I’m coming from and perhaps provides a little food for thought.

Salad plate

A couple of postings ago I wrote about the difference between my two chairs, and the pros and cons of using one over the other.  And while it basically came down to degrees of independence and pain, the fact remains the electric chair is the only chair I can use unassisted.

At the end of May I had plans to go to a concert with a couple of friends, and so that morning when I got up, knowing I also had errands to run, decided to get into my electric chair.  It had been awhile since I’d used it, but I figured the errands, coupled with our taking the BART to the show, would make it the most sensible choice for the day, despite any pain I might have to endure.

That was the thinking, anyway.

Somewhere after six hours, with the pain building incrementally, on my way to pick up a sim card with my friend, I needed to stop (much like I always do to center myself with the pain), and then it hit me — an overwhelming sense of clarity — an epiphany, if you will, where I realized I could no longer use that particular chair.  And it was peaceful, and I was fine with whatever the future might look like, with or without it.

You see, there’s an ocean of difference between intellectually accepting something and actually accepting something, deep down in the very core of your essence, and what happened at that moment was the latter.

Up until that time I’d accepted things were going to change, in all sorts of ways, but I wasn’t at peace with it, not really.  I was still hung up on how it would all go down, rather than having faith that — regardless of how things unfolded — it’d all work out.

That epiphany was beautiful, if for no other reason then it allowed me to surrender to the moment and remind me that change is ever occurring, and whether we struggle against or not, it’s happening.

And if I need to leave my electric chair behind for now, well, sure, it’ll be different, and there’ll be a whole new set of challenges and hurdles to overcome, but I began my post injury life in an acoustic chair and if I managed then, why should it be any different now?

Sure, I’m not as strong as I was back in the day, and Berkeley is a lot more hilly than Newport Beach, but I’ve got friends and they’re just as adept as ever at helping me navigate those things which I can’t.

Bottom line; the options may have shifted, but so to has my perspective, and, quite frankly, all is just as it should be.

Now, dating might be a bit of a trick, but then when isn’t it?

Coffee? I know, weird, right? But the thing is, it works.  Of course, I don’t think you’re going to find anything out here on the Internet to support this treatment, but physiologically here’s why I believe it does the job: Oftentimes — especially in the morning when I first get into my chair — my pain so severe it has the tendency to make me lightheaded.  As I struggle to stay above this lightheadedness, the pain increases, which in turn causes more lightheadedness — a sort of feedback loop, if you will; one contributing to the other.  Anyway, it occurred to me if I could somehow interrupt this cycle, namely interrupting the lightheadedness, the pain might become a bit more manageable.  Coffee, being a stimulant, seemed like the perfect elixir for this problem.  By increasing the blood flow I was able to minimize my lightheadedness, and thus focus solely on the pain.  It’s not 100% foolproof, but it works most of the time and that’s good enough for me.  Again, it’s probably not medicine you’re going to find substantiated anywhere, but it helps my particular problem and that’s all that matters.  Your mileage may vary.

pau.

Well, here it is, my dog Shadow’s 16th birthday.  Earlier this week I wasn’t sure we’d make it this far, but alas her resilience and lust for life are not things to be trifled with.  Per her annual neck tweaking/stinger/compressed vertebrae, she was literally just — Sunday, Monday and Tuesday — hobbling around, not eating, not barking, panting and even a bit incontinent.  I say annual, yes, so perhaps it shouldn’t be so surprising, but the thing is, as she approaches these more twilight years of her life, it certainly makes one pause and wonder if this is where the road starts to tip at a more downwardly angle.

But if this is indeed the downhill slope of her life, she seems generally unfazed, with a playful light still glowing brightly behind her slightly cloudy brown eyes.  Just yesterday we were on the track and she walked the entire mile, occasionally bouncing after a tennis ball.  She has the legs of an old dog, to be sure — not so steady on the abrupt stops — and like our favorite aged ones, she farts like a champion, is less tolerant of creatures younger and more rambunctious than herself, forgets things, can be willful, and more often than not prefers the consistency and comfort of her own carpet over travel.

Now, I don’t know how much more time we have together — conventional wisdom and golden retriever genetics would suggest not a whole lot more — but however long it may be, each day, month and year that passes is a moment I’m forever grateful to be part of…

prolific flatulence included.

Happy birthday Shadow and happy May Day, all.  Peace.

pau.

So in my last post I ended things on the up note proclamation of adjustment, and while I think it’s pretty self-explanatory, I want to further clarify what that means in my life — both specifically and in the abstract.

First, the specific (big to small, small to big, big to big, whatever, I’m not sure).

* Sailing: the kind of which that inspired this site, is — as I’ve decided to label it — on temporary indefinite hold.  This was a tough one to wrap my head around, for sure, but heeling (when the wind fills the sails and causes the boat to lean) for extended periods of time, on either side of the boat — high or low — is extremely taxing on my neck.  I’m not sure when or if this will change, but for now I’m taking stock in rest, design ingenuity or a really big catamaran showing up.

* The wheelchair: this is a tricky one because I have a bit of a balancing act going on already.  On the one hand, the acoustic chair — the chair I use on the track for my exercise routine — causes me far less pain and allows more uptime without pressure problems than my electric chair.  But on the other hand, I’m far less independent and need assistance most everywhere I go outside of my home, the track or smooth, flat surfaces (not exactly common in Berkeley).  The electric chair allows me the freedom to take off and go where and when I please, but again, the problem is the pain, and the now ever increasing issue of having to stop every 30 m or so to let the function in my arms return — a sketchy situation under the best of circumstances, but when crossing long, busy intersections even more so.

This give and take/pros vs. cons of choosing either of these chairs is forcing me to assess what I want from my life, and to some extent reshape what my independence means to me.

* Exercise: over the last 6 months or so I’ve had to face the fact that — for the time being, at least — I’m not the same guy, speed or distance wise, I once was. Instead of a mile and a half on the track, I can now only do a mile in the same amount of time. At first this was frustrating as hell, but I’ve since come to a place where if I’m still able to do it, and I can feel “the burn”, I’ll take what I can get and let time sort out the rest.

The abstract (where I get all metaphysical on ya).  Over the years I’ve come to a pretty clear understanding that everything is borrowed.  And what I mean by that is this life — our health, our bodies, our families, our lovers, our spouses, our friends, the sun, the stars, the Earth, war, platypuses, our favorite Mexican restaurant, record collections, family heirlooms, houses, iPads, etc., all of it — are temporary phenomenons and will fade away.  You can count on this.  But if we live in this moment — right here, right now — then we’re experiencing something altogether more real — the truth, in fact — and that’s pretty compelling.

So when I speak of adjustment in terms of the above understanding, what I’m really speaking to is greater awareness of where I truly am.  It’s the ultimate task at hand.  But it’s easy to lose this, and I’m still not all the way there yet — not 100% of the time.  At times, I try to cling to that which can’t be clung to and I slip out of the moment; getting hung up on the temporary and how I think things should be.   When this happens, I suffer, and that’s when — as in my big WTF? in my last post — I miss what’s really going on and get lost in what’s going away.

Understanding — or better yet, knowing — everything is borrowed is a powerful catalyst to remind us about what isn’t, and also to facilitate a greater celebratory appreciation of all that will leave us.

Just as life means nothing without death, love means nothing without hate, light means nothing without the dark, so too is it true with that which lasts and that which doesn’t. Letting go of anything — even, well, you know — is an adjustment well worth making, and makes everything a whole lot easier to roll with… and I’m so about the rolling.

Let the recalibration begin!

pau.

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.

pau.