Wednesday, October 20, 2010

Wishing a Full Recovery for Eric LeGrand

In my very last post about the wheelchair user who scored a touchdown I described it as a cool convergence of sports and disability. But unfortunately every yin has its yang, and thus it was with great disappointment that I learned about Rutgers defensive tackle Eric LeGrand, who was paralyzed below the neck after making a tackle against Army this past weekend.  He has since undergone emergency spinal surgery and apparently is in good spirits.

Now in my world the phrase “paralyzed below the neck” is typically synonymous with quadriplegia, so I can only assume that is the kind of recovery that he has in store for him. As daunting and unfortunate as that is there has been some pretty good recent precedent of football players sustaining significant spinal cord injuries and having successful recoveries from them.

In 2000 former Penn State cornerback Adam Taliaferro sustained a SCI at the C-5 level. He was given a 3% chance of walking again but after eight months of rehab he was on his feet again (but never played again). I still remember watching him lead the team onto the field the following football season. It was pretty emotional. Rutgers coach Greg Schiano apparently spoke with mentor and former sideline boss Joe Paterno, who was Taliaferro’s coach at the time of his injury, to pick his brain about how to properly support LeGrand and move forward with the team.

In 2007 Kevin Everett, a reserve tight end for the Buffalo Bills, sustained a SCI while attempting a special teams tackle against the Denver Broncos. He suffered a compression of his C-3 and C-4 vertebrae and initially had no movement in his extremities, which made him a very high level quadriplegic. But immediately after his injury a Bills team physician, Dr. Andrew Cappuccino, decided to do a medical procedure known as cold therapy or hypothermia therapy that reduces the body’s overall temperature via an intravenous cold saline solution and thereby protected Everett’s spinal cord from further swelling and damage. The therapy was developed with a great deal of help from Dr. Barth Green, the president of the Miami Project to Cure Paralysis. Dr. Cappuccino called Dr. Barth after he started the cold therapy. Anyway, it was a risky decision but ultimately was a good move because despite his initial chances of walking being bleak or dismal Everett also went on to be able to walk again.

So LeGrand is currently in a tough spot to be sure. I still vividly recall being in his shoes fourteen years ago: the fear, confusion, frustration, uncertainty, etc. But working in his favor are the facts that he is a conditioned athlete and that he had his injury in a time where there are a litany of medical advancements in the world of SCI. I extend my support and sympathies to both he and his family and hope that he has a full recovery. With some luck he might even end up like Taliaferro and Everett.


Wednesday, October 13, 2010

Wheelchair User Scores a TD

With football season upon us, and with me being both a super football fan and a person with a disability, it's always cool to see those rare occurrences when the world of sports and disability converge. Today I came across this link to Fanhouse* about a high school football player in a wheelchair who scored a touchdown. The player is Dylan Galloway, a senior at Manila High School in Arkansas who has paralysis due to cerebral palsy. Apparently, the opposing team agreed ahead of time to cooperate by clearing the way for Dylan to score on the very last game of the game. Good for that kid. And a great demonstration of good sportsmanship. Check out the video below.

*For the record, I disapprove of the article's use of the phrase "confined to a wheelchair."

Monday, October 11, 2010

RIP Christopher Reeve: My Personal Encounter with the Man Himself (From the Archives)

Yesterday marked the six year anniversary of Christopher Reeve’s passing. To pay tribute I thought that I would repost what I wrote last year about his impact, the day that I met him, etc., and to continue that practice in future years. The only thing that I will add here at the forefront is that within sixteen hours or so of making that post live I got an email from Christopher Reeve’s daughter, which was obviously a great surprise. I won’t get into the details in order to preserve what was a private, special exchange, but in short she thanked me for writing the post, for keeping her dad’s memory alive, that my intuition about him was correct that day, and for respectfully giving him the moment of privacy that you’ll read about further below. The Christopher & Dana Reeve Foundation and fellow Reeve supporters were my target audience with that post, so it was quite shocking to be contacted directly by a member of the Reeve family, let alone so soon after posting it. But I’m glad that it had such a positive impact, and I still consider that the highlight of my writing “career.” You can read the Reeve Foundation post commemorating the sixth anniversary of his passing here or see how people are sharing their thoughts on the subject here. Check out my archived post below:

Today marks the five year anniversary of Christopher Reeve's passing, and I couldn’t let it pass by me without sharing a few words about that. In short, his death was a highly unfortunate event at the time, and its saddening impact remains so to this day. I still remember that day quite vividly in fact. When I first caught word that he had died everything in my life stopped briefly. I was a month and a half into my second year of law school, and needless to say my studies took a dive for the rest of the day. In its stead I hit the web and read everything about his passing that I could. That followed with a period of extended quiet reflection. I found the way he died (suffering a cardiac arrest that was preceded by a skin pressure wound that caused a systemic infection) very sobering because it’s something that’s an issue for all people with SCI. Thankfully pressure sores and skin breakdowns have never been a problem with me – presumably a result of my being careful with all the body parts I can’t feel and my surprisingly tough skin – but what put things into perspective was the realization about how things could go south pretty drastically if it were to ever occur.

Once the initial shock wore off my thoughts on the matter went into two different directions. First, and I briefly echoed this in my Derrick Thomas post, I was deeply saddened to lose an “SCI brother.” Living with paralysis stemming from a spinal cord injury has become a pretty common disability type these days but that group as a whole is still quite a minority as compared to everyday, able-bodied society as a whole. So to that regard I’ve always felt like I’ve shared membership in a club of sorts to others who live with SCI. Thus I always felt a fairly strong connection to Christopher Reeve. And not just that, but he was the president and CEO of our unique club.

That said, secondly, and maybe selfishly, my thoughts then immediately went to fear for the future of SCI research and fundraising. People in my position, who have lived this lifestyle for years and years, are not just going to wake up on some given morning to discover that all of our physical faculties have returned on their own. We rely quite exclusively on the discovery of the elusive cure for paralysis to get most, and possibly all of it back. With Reeve’s passing, the discovery of said cure and other related things that improve the lives of people living with SCI suddenly felt iffy because our greatest champion for the cause had fallen. Reeve was almost hands down the face of our disability, thanks in large part to his popular global icon status as SUPERMAN. Without his unfortunate accident, and the publicity that ensued, SCI issues would not have been thrust into the public sphere to the immediate and vast nature that they did. Moreover, his journey in the aftermath, his positive attitude, and his decree that it was not a matter of if, but when he realized his dream of walking again brought a ton of awareness and activism about SCI in a short period of time that I’m guessing would not equal where we would be fourteen years later today without him.

Thus right away I was highly concerned that all of the great progress that was being made in that area while he was still alive would slow down significantly after his death, or worse: stall out completely. But the Christopher & Dana Reeve Foundation has continued to do great things in his wake, and with Marc Buoniconti being on the cover of Sports Illustrated a few months ago representing The Miami Project to Cure Paralysis and all of their great work, I think that the fight for a cure for paralysis has been able to maintain itself as an important public issue that requires much more progress to fulfill its ultimate goal.

My own personal account of Christopher Reeve dates back to the fall of 1996 when I met him briefly in Denver, CO. Somewhere around early November Reeve was in Denver for a major public speaking engagement at the downtown convention center. At the time I was still out in Denver for an eight week extensive inpatient spinal cord injury rehab stint at Craig Hospital, arguably the finest facility in the country (if not the world) for such a thing. While he was in town he stayed in a room about six doors down from mine in the East Building at Craig, which is essentially the residence wing. All the rooms in that part of the facility were set up like single living accessible apartments with a private bathroom, a mini fridge, an office-type area, and a living room area with a pullout couch bed for family members to sleep on. Most of the Craig patients that roomed in the residence side of the facility were in their final transition period before getting discharged from rehab, which for me meant that at the time I was in my last two to three weeks before going back home.

It was no surprise that Reeve stayed at Craig while he was in town. First of all, the room where he stayed was easily the most accessible lodging in the city, not to mention completely private from the public. Second, the word on the street leading up to his visit was that immediately after his injury Reeve wanted to come out to Denver to do his SCI rehab at Craig, because of the great national reputation it has, but they didn’t have any patient openings to accommodate him at the time. I’m not sure if that’s actually true but if it is then in a roundabout way he finally got his chance to stay there and see the facility first-hand.

The morning after he arrived he held a city-wide press conference in the media room at Craig (fun fact: I used to watch my Packer games on their 72 inch big screen TV). I don’t remember if I missed the presser because I wasn’t up yet or because I was in the middle of my morning therapy sessions, but my dad went down and took some pictures (I’ll have to scan and post later). Sometime afterwards my dad came back to my room and mentioned that a bunch of other patients had congregated a few doors down from Reeve’s if I wanted to go try and meet the man himself. I’ve never been one to resort to rubbernecking but considering I would probably never have such an opportunity ever again I ventured down the hall to join the other half dozen or so nonetheless.

After a brief moment Reeve appeared from his room and came down to us. He used a sip and puff mechanism to drive his wheelchair and as soon as he stopped and moved his mouth away from the sip/puff thing he said “Hey, everybody” in a quiet, friendly voice. The group responded with a collective ‘hey’ back. Then he asked what we were doing there at Craig, kind of focusing his attention on one lady in particular to start things off. She was a paraplegic who was discharged less than two weeks after I arrived at Craig. If my memory serves it was her second time at Craig due to a re-injury. I remember also that she was very loud, brash, and kind of speedy aggressive with her wheelchair, but not necessarily in a negative way. She belonged to a click of sorts with a handful of other patients who had been in rehab together for quite the same amount of time. Whenever I saw them hanging out in the halls I felt like a high school freshman steering clear of the cool upper classmen group all over again. It should be noted that in true circle of life fashion (my nephew’s really been into the LION KING lately so I had to throw in that reference) about four weeks after she was gone I found myself involved with a similar click of my own. And in my rehab discharge roundtable with my parents and rehab team my physical therapist (an ex-Navy SEAL of 26 years) mentioned that a handful of his other rehab patients had started requesting a fast manual wheelchair like mine, assuming that the chair was the reason for the speed I was exhibiting, not me making it go fast.

Anyway, when he essentially asked her what she was there for she very quickly replied, “To see you.” Then he said, “Well are you here for therapy as well?” And then she said back, “Nope, I just came to see you.” I don’t recall the details of any other specific conversation exchanges he had with the group but I do remember that he didn’t stay and chat with us for long. I remember thinking at the time, and still feel the same to this day, that it was unfortunate that of any person in the group that he opened up his brief friendly dialogue with it was with the one person who was no longer affiliated with the facility and had only visited that day just to get a close up look at him.

My immediate impression of the whole exchange at the time, and an opinion I still strongly share to this day, is that I think he just wanted to shoot the breeze with us about our therapies and our thoughts on getting a chance to do rehab at such a fine facility. Kind of a “we’ve all gone through this” note comparison session. That theory carries extra weight if it’s in fact true that his admission request was turned away. So as far as that goes, I always felt like he just wanted to pick our brains about getting to do something that he never got the chance to do. That’s why I think it’s too bad that most of his native chit chat time was taken up with someone who couldn’t read between the lines. I feel like at least she could have told him that she was a former patient and not just a crazy fan. Had he engaged me instead I would have said that I was a c-7 quad, had a diving accident, was from Wisconsin, came there for more aggressive therapy, it was hard as hell to be away from my family and friends but it was a necessary move that I didn’t regret, talked up the quality of the joint, and asked where he rehabbed and what his thoughts were about it. I guess I should have raised my hand or something.

That afternoon I got the chance to go to the convention center and see him speak. In fact, most of the hospital staff and patients got the afternoon off from therapy to do so as well. For me it was a very liberating round-trip because unlike most everyone else who got bused downtown, I got a separate day pass to go by myself with my parents. One of the smart things my parents did was have our Chevy Blazer driven out to Denver so they had a vehicle to get around. It was only a small handful of times that I got to leave completely untethered from the facility. So it was kind of a big deal at the time to be able to drive down there by ourselves.

Because we were on our own schedule, we got to head downtown after most everyone else had already left. As fate had it, on our way to the elevator we crossed paths with Reeve and his crew of people, who were also getting ready to load up on the elevator. They were right by the elevator doors so we waited politely behind this decorative wall divider thing so that they could get on the elevator first. But someone in his entourage saw us and and waived us past because they weren’t quite ready. As I was just about to break into view of him I heard him say “A little more to the right” which based on my own experience I assumed meant that their holdup was because he needed a body adjustment in his chair. Thus even though I passed by him within less than six feet between us I didn’t look over in his direction to respect his privacy. In retrospect I probably should have glanced over and given him a quick hello or a friendly nod, but at the time I felt pretty strongly about keeping the blinders on because I knew how frustrating it was to have people stare at you while you were getting some private adjustment.

So my one close encounter with Christopher Reeve didn’t quite have the bang for the buck, and was more like a fly by, but at the time it was a really great moment for me and my parents. And I always like getting the chance to share the story. But overall, the thing that I will always take away from that day and that chance meeting is that when you strip it all away – the Superman thing, the social popularity, the global icon status, the face of our disability – he was just one of us: a guy who sustained an unfortunate, life altering spinal cord injury, became a quadriplegic, and was just trying to continue on with his life as best as he could. And yes maybe that included waiving a few people onto the elevator ahead of him because he needed help getting a few small adjustments to make him feel more comfortable and presentable.

Keeping with the spirit of this anniversary, here’s a couple of related links I wanted to share. The first is an article written by the CEO of the Christopher & Dane Reeve Foundation about how the best way to honor his legacy is to find a cure for paralysis. Clearly, I concur with that notion. The second is the Reeve Foundation forum page where people have been posting their thoughts about the five year anniversary of Reeve’s passing and sharing stories about how he touched their lives.

So in closing I say rest in peace, good sir. It was great getting the brief chance to meet you once upon a time in Denver.