Ramp Less Traveled Website Launch!

Hello! If you’re looking for the website of Ramp Less Traveled nonprofit organization, please visit http://ramplesstraveled.com. I will no longer be writing regular blog posts here, but will transition all of my energies to Ramp Less Traveled. We offer financial support and mentoring opportunities for students with spinal cord injuries to help them get to college. Please check us out, and spread the word! Thanks!

The Year’s Crown

The holiday season, the crown of the year. I write to wish all of you a happy month of holidays. I hope that we embrace all the comfort and truth, religious and otherwise, they may bring. What I love most about this time of year are the traditions and admiring their resilience amidst inevitable yearly change. Traditions are like the trunk of a tree that flourishes no matter which coat of leaves it selects for the year. Some say that even though the particulars of the past and present rise and fall, swept about by gusts of wind, all that is essential remains. If that is true, then there is no loss from which we cannot recover. Change without damage. This knowledge tempers slightly the painful reality of my holiday season: that what I want most cannot be given. So today I will accept change for what it will bring me, curse it for what it cannot, and cast my eyes towards the circle around me and remember all that it does not need to.

Love and light,
Jay

What the Maya Got Right

So I guess the Maya were wrong. My floor did not collapse into a boiling pit of lava this morning. Equally disappointing, those hellacious world-ending fireballs raining from the sky turned out to be, upon closer inspection, nothing more than innocent snowflakes. Even though the Mayans’ doomsday prophecy has proven just as absurd as all the others, I think it serves a purpose. When was the last time you thoughtfully spoke with another about death? Since we were all supposed to become heaps of ash today, what substantive steps did you take to mend broken relationships or at least internally prepare for what could be your mind’s last cognition? Nothing? Yeah, me neither. In our society it is much more acceptable to talk about the end of a TV program than the end of a life. Grief is privatized, compartmentalized, and Hallmarkized. Compare our treatment of death with the conspicuous funeral pyres and public grief rituals of many civilizations, ancient and modern. Silence can make a hard thing even harder. Even our temporary survival does not erase the fact that…

I am going to die. So are you. As are my dog, the bamboo plant sitting on my desk, the spider spinning a web in the corner of my closet, the lowly paramecium gliding across the food stain on my kitchen countertop, and the majestic oak I can just barely see outside my window, its snow-dusted branches stretching impossibly high towards the heavens and – dare it – towards immortality. Beauty and size and complexity serve only as yellow lights and speed bumps on the street towards a single destination, where U-turns are illegal. The song stops playing, the music fading or ceasing instantly to ungoverned silence, shoulders sagging, and all other metaphors I can think of become irrelevant or all too relevant – all this true no matter what show continues.

When faced with the senseless reality, how to pull yourself from the reverie that impends at the corner of your eye? As if he has already whisked you away to his castle under the hill – all sterility and necessity and empty of surprise. If going beyond the veil is natural and peaceful, why does it rustle so loudly? I don’t know, and neither does he.

And yet – the only thing as certain as death is life. It fills in the gap that allows us to examine why and how it could ever end in the first place. And the last place. Again, Isaiah is wrong – life is naught without death and death naught without life. There can be no dent without an object to be dented. Fleeting and fleeing, like a gossamer of silk dancing a capricious ballet upon the nearest stage of wind, it holds us in wonder for its beauty and – crucially – its transience. Precious for its rarity, its temperance the enemy.

Grounded herein, real work may begin.

So as we laugh at the Mayan calendar (or our interpretation of it), we should take notice. Their gifts to modernity are perhaps more complex than imposing pyramids and maize. Don’t be afraid to contemplate the end a little bit, for it is the only way to construct a rewarding path to get there. Extend your hand and bend your ear. Heighten each moment. You just might find, as I have, all the more reason to celebrate — that when our summons comes we will have made more merit than malice.

I’m Baaaack

In many ways I had to keep you waiting. Evasive and misleading, maybe. But necessary.

As many of you know, I just finished my first semester at Duke University. One year late and several hundred mindsets later and I’m back on track. Each time I committed to writing an update, I was overwhelmed by an imperative to present a balanced account of what I had done and what I had not done, tangling with competing gossamers of detail and trying to decide just which braided pattern would most accurately capture the incredible array of experiences I encountered. So… I was lazy, and I’m sorry.

All things considered, I had a remarkably smooth start to my collegiate career. There is a significant amount of logistical crap that must be dealt with when entering college in a wheelchair. Thankfully, Duke supported me 100% of the way. I work closely with the student disability access office in hashing out academic, housing, and other accommodations. Of course, my disability has colored my entire university experience. There are many related issues I will explore in greater detail in upcoming posts, but suffice it to say for now that while differences matter greatly, they can also prove fertile ground in which novel experiences and relationships may grow. Despite the difficulties I faced – and they were not small – returning to school has forced me to look forward and helped me make meaning from madness.

I have spent the last year and a half desperately wishing to return to school, and my fervent rehabilitation was all one big effort to make that happen. Somewhere along the way I forgot why I even wanted to go back to school, and it became more of a mindless abstraction rather than a concrete goal. But after the first week of classes at Duke, I remembered. Truly exceptional professors, courses, and peers— not to mention the deep well of thought from which the readings allowed me to draw — all reminded me why I have always loved school and how it could provide me an avenue of liberation. In the classroom I am able to participate just like everyone else. My contributions are not defined by what I can or cannot do.

Although I did not intentionally choose courses that cleanly blend together, those I took this semester were thematically cumulative and the effect was pretty powerful. As part of a thematic cluster centering around the theme of knowledge in the service of society, I took a public-policy course on civic engagement, one on ethical issues at the end of life, and an interdisciplinary dinner seminar uniting the two. In civic engagement, I explored different models of citizenship and how those can be translated into actionable policy and behaviors. I’ve always been fairly committed to a career in the public service, and this course provided useful theoretical and practical frameworks in which to discern what exactly I want to do. The course on end-of-life issues, or death class as I affectionately (?) called it, provided a unique experience to approach the study of the only thing that will happen to all of us – death. I intend to explore a few of the issues discussed in class in upcoming posts which I promise will be surprisingly optimistic. Courses on contemporary French politics and the meta-history and analysis of European diffusionism rounded out my first semester. Overall, studying however narrowly these disciplines has reminded me just how much remains to be seen. Another glimpse of the academic black hole I’ve always been drawn to.

As I grew more comfortable with a new academic routine, I slowly began getting involved outside of the classroom (those of you who know me understand that school is only part of the equation). I now serve as the undergraduate representative to the arts and sciences Committee on Curriculum. I have also initiated a project to narrow the gap between the Duke community and students on medical leave, and an initiative to enhance the ethos of political advocacy on campus. This, in addition to therapy workout sessions three times a week and cheering on the #1 basketball team in the United States…which is Duke, if you’re not up on the news. I look forward to exploring additional co-curricular activities this next semester.

Again, I apologize for the absence. I intend to update much more regularly in the future. I’ve got some ideas and initiatives coming up that I’m pretty excited about, so stay tuned!

Walking, Revisited

Hello again, friends. For your enjoyment and education I have included in this post a video of my last treadmill session. After I finished my inpatient rehab at the Shepherd Center last October, I enrolled in a research study as part of the NeuroRecovery Network. The NRN is a faculty of the Christopher Reeve Foundation that provides spinal cord injury patients access to treadmill therapy training. All this therapy obviously did not make me walk, but it provided ancillary benefits such as improved circulation, vertical tolerance, better blood pressure regulation, and sustained range of motion. For me, it was wonderful to be able to stand and walk every day, however artificial it may have been. I apologize for the poor video quality… I’ll try to work on that for the next video. Enjoy!

7/17/11

Hello again! I owe you an apology for the break. I am now back home in Indianapolis, after touching ground in Durham and Seattle and a not-so-fancy rest stop in between. I could offer a string of convincing excuses for not posting for so long that ranges from car trouble to family trips. I could regale you with a tale of a hellacious hotel whose most luxurious amenities include a can of Lysol and a charred iron mark in the carpet, but that is a story for another post. Instead, I owe this post to more grievous abstraction: the year mark of my injury.

In a world where perfection is largely a myth, a world of almosts, it is the rare event that draws a clean line between white and black. But that is exactly what July 17th, 2011, did for me. In the time it takes to dive, an action I had done just a week before off a two-story cliff in Hawaii, my body failed me. I was stopping, falling and exploding. Resisting. Screaming and fighting. Burning. Twisting and torquing. And most of all demanding of the air why a capsule of very solid water would not release me from its numbing grip. On and on the maelstrom went, the ambulance yielding hospital rooms yielding rehab gyms in a progressive kind of hell.

Sometimes I think of nothing but returning to my old life, with its meticulous architecture and order and absolutely no catastrophic injury. I want to stand up and turn around, sharply, and face the wrinkled blackness of the past year. If given such a magical circumstance, I would grit my teeth and steel my brow with grim purpose – as if by force of will I could melt the black away. In my dreams I stare up with green eyes at the unformed mountains of what I could have achieved this past year had I gone to Duke as planned.

But, of course, these lines of thought are unhealthy. Reality wheels forward. Some days it’s easier to look on toward the mountains in my future. Some days it’s not. Whenever a dark spot surfaces, I always remember the love and support of those around me and I realize how lucky I am. Call it my anniversary present. Or a display for myself and others of the triumph that can come from tragedy. No matter in how many dark dreams I find myself, that is always a feeling that gives me hope when I wake up.

Trial by Water

Paralysis comes in all shapes and sizes. Most able-bodied people, and I count my former self among them, need only see the shadow of a wheelchair before assigning a template–he is sick so he cannot walk– to the disabled. We are not trained to recognize the extraordinary diversity among those afflicted with spinal cord injuries, strokes, or any of the host of other paralyzing agents. A quadriplegic is a quadriplegic, right? Wrong. There are quads who can’t breathe, quads who can’t move, quads with no arm function whose legs work just fine, paraplegics who deal with the opposite, hemis who can use only one side of their bodies, ones who can move but not feel or feel but not move, and on and on and on. Oh and don’t forget about the underlying genetic diversity of the people themselves. Paralysis doles out his curses blindly, dusting some more profoundly than others.

But if there is anything that unites us, it is our yearning for independence. Possibly the greatest evil associated with spinal cord injury is the loss of independence. Sure, not being able to walk or run or swim sucks, but that is nothing compared to having to ask for a cup of water, or allowing someone to tie my shoes. It is in the countless mundane tasks that I notice anew my disability. I will be honest, I hate asking for help. But ask I do. I do what I have to do so that I may do what I want to.

Like waterskiing. Yep. That’s right. To your private lists of what seems impossible you may now add this: I went water skiing this past Saturday on Lake Allatoona in northern Georgia. Thanks to an adapted sitting waterski and the amazing generosity of the Shepherd Center volunteers, I spent ten minutes zooming along the water’s surface, the sharp wind whipping away my misgivings and fears. I had a blast. This was something I feared I would never do again, resurrected by adaptive equipment.

So what does adaptive equipment do in the arena of independence? On the surface, it seems to have suspended my disability long enough for me to enjoy a new activity. But I can never shake away a deep reservation regarding adaptive equipment. For me, using a sit ski or a splint or a lap desk comes with a curious blend of empowerment and belittlement. I appreciate its value even as I despise its need. Yet I still make the decision to use it—I still ask for help. So it appears that pride must sometimes be neglected in favor of inclusion. Perhaps everyone can benefit from this thought. I need to realize that asking for help is not the same as ignoring my own worth; to suppress one’s pride is to recognize that something larger than oneself is at play. Something that Paralysis may never get his hands on.