Ramblings on healthcare, medical education, and life with a spinal cord injury
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A Much Needed Update

Well, it’s been quite a long time since the last update.  Not for lack of activity, mind you.  Those of you who know me well know that I certainly don’t live a life of inactivity – wheelchair or not.  These past few months have been no exception.  So what follows is synopsis of what I’ve been up to, as well as the real important stuff: where I’m at with respect to recovery.

I’ve been focusing a lot on vulnerability research, exploring new types of vulnerabilities and methods of exploitation, which is what drew me into the information security field to begin with.  Unfortunately, I wish I’d had more time to devote to pure research in the past.  Not that I regret any of the decisions I made or the client work that I’ve done.  Far from it.  I’ve had the chance to create and be involved in some pretty cool things, which was my goal before medical school.  It would have been nice to get into the more detailed nitty gritty of software exploitation that I’m doing now.  But hey, at least I’m doing it now.  I think I’ll be starting a separate blog sometime soon to chronicle the more technical things.  And I certainly plan to stay up-to-date with the field as a hobby, as it’s been something I’ve been crazy about since I was much younger.

Just this past weekend I went to DC for a security conference.  I mention it not to focus on the security side of things, but because it was the first trip I’ve taken since the accident on my own.  Over the past year I’ve taken several car trips with other people and stayed at a number of hotels, but never the train and never by myself.  Strange, a twenty-nine year-old man who’s traveled the world for clients in the past thinking about taking a trip alone for the first time.  Amtrak carried me from Penn Station to DC and back, and Marriott helped on the bedding side.  Fortunately enough, the conference was at the same hotel I stayed at, which made things a lot easier.  The trip was remarkably unremarkable.  Managed to get onto the train without issue, and transferred into a seat.  The gap getting out of the train was a bit too big for me to comfortable wheelie off of (especially with a heavy bag on the back of my chair throwing my balance off, a six-inch drop, and a gap that seemed about four-inches wide), so the conductor got a bridge plate.  It’s basically a small, foldable, three-foot long sheet of metal that acts as a ramp.

The Marriott was great.  Their accessible rooms truly are accessible, unlike the Westin I stayed in a few months ago for a wedding.  While the Marriott had a roll-in shower, angled floor with a drain and a fold-down bench to sit on, the Westin had this ridiculous “bench” at the end of the tub.  It was really just a normal bathtub with a four-foot by four-foot tile platform at the end of it.  There was no tub bench to sit on, so the only place for someone disabled to sit on is the flat platform at the head of the tub.  Now, I’m no physicist.  But when you have somebody sitting on something that’s vertically higher than the tub, do you think all the water is just going to preferentially drain into the bathtub when there is no slope?  Let me tell you that, no, it does not.  So the bathroom floor at the Westin was a lake for the weekend.  Lest you think I’m just bathroomly inept, the hand-held showerhead in the Westin, which had its own water control, was mounted right at the end of the tub by the platform.  Whoever designed that “accessible” bathroom clearly doesn’t understand what accessibility really means.  The Marriott even had a cut-out under the sink, to allow clearance for someone’s legs while in a wheelchair.  And so did one of the sinks in each of their public bathrooms.  Everybody responsible for designing spaces to be used for disabled people should have to actually sit in a wheelchair and try their spaces so they can learn from their mistakes.  Of course there’s no way for them to try them beforehand (although CAD software really should be able to model this kind of thing), at least they can explore different spaces and see what it’s really like.

Coming up this weekend will be the first airplane trip.  Kristina and I are heading to Cleveland to meet with faculty and administration at Case to do some planning for starting medical school in July.  While there I’m hoping to also scout out a few possible places to live and make some contacts that will be helpful when it comes time to sign a lease or mortgage in a few months.  And I’ll also get to see how another hotel chain handles accessible rooms – this one has already told me they have a roll-in shower, so hopefully we won’t create a miniature Lake Erie on their floor.  With any luck, I won’t have to put the snow chains on the chair tires.

Over Christmas I went to visit some family I’ve got in Maine.  Now, there I needed snow tires.  It’s an annual trip for me, and I love spending time with family that I’ve always been close to.  My uncle built a makeshift ramp from the first floor to the second floor of their house, using wood to create two tracks on the stairs that fit the wheels of my chair properly. Since the tracks were only approximately the width of the chair, everybody else could still walk up and down the stairs relatively normally (albeit with a small width).  He then rigged up several heavy-duty sailing pulleys to the beams of the house at the top of the stairs, and we used the pulleys to basically pull me up and down the stairs.  It was quite a creation, but it worked every time and was safe at the same time.  I spent a full week up there (up in Maine, not up at the top of the stairs), and it was really great to spend time with family, get away from the city and unwind a bit.  I also took a walker with me and made an effort to stand just about every day while there.

For some reason after getting back from that trip, though, I was really feeling down.  For the first week or two, I was feeling a bit detached and more moody than usual.  I think part of it was having to return to reality.  Although I certainly can’t ever forget the disability I have to live every minute of every day with, it’s easier to ignore it when you’re in a different surrounding doing different things.  My legs were also understandably stiff when I returned.

But the bigger part of it, I suspect, was that I was quickly approaching one year since the date of my injury.  It’s hard to believe that as of this past January 27th, 2009, it’s been a whole year since that awful night.  Looking back on it, I’ve been through so much and it makes the year seem so long.  But it has absolutely flown by while it’s been happening. Somewhat in a daze, of course.  When I look back at the original blog posts from when I was still hospitalized, it blows my mind to remember just how functionally impaired I was.  The weakened grip strength (which, by the way, about a month or two ago I grabbed the grip strength tester and was pulling 120 psi with both hands), the inability to roll over in bed, heck, I couldn’t even sit up on my own back then.  I’ve come so far in the past twelve months that it’s hard to even remember how impaired I used to be.  And I remember in the past, I haven’t been able to remember life before the injury. Funny, those memories seem to be slowly coming back.  I’m glad to now how the old blog posts to read over and help me to remember where I’ve come from.  It’s humbling, to say the least, to compare to where I’m at now.

Now on to the good stuff.  About four months ago, I took my first steps on the parallel bars in physical therapy.  Then in early November, I also started to do some walking on a walker with full-leg braces.  Well three weeks ago at Cynthia’s direction, just before the one year anniversary of my injury, I’m happy to say I shed the leg braces and finally took steps on a walker with no assistance.  Because of some of the past difficulty I’ve had with leg spasticity, we’ve been cautious about getting onto a walker without braces too soon.  The concern, of course, is that my legs will spasm and give out from under me, and I’ll wind up on the ground.  So we have proceeded very cautiously, and the first time standing up without braces I had one therapist on either side of me, and another person behind me to hold on to my belt just in case something went wrong.

But up and off I went.  And these weren’t the sloppy, barely steps that I had first taken on the parallel bars a few months ago.  Both legs were able to support my weight independently, and although the right leg is still weaker than the left, I was able to move them both independently.  So now no walking in parallel bars, no walking with braces, just walking with a walker under my own strength.  Since then, I walk in every PT session (4-5 days a week), and try to stand at least one of the two days I’m not in some form of PT.  I can walk about fifty feet before needing to rest when things are going well, and I generally walk three to four times each session.  And I continue to stand in the standing frame and in the parallel bars each of those days to help build strength.  I’m generally at Sinai for three and a half hours for PT, and I put in as much extra time as I can.

There are still some accessory muscles that are extremely weak, barely measuring a one out of five on the ASIA impairment scale.  At this point there are only a couple that are still that weak, but just one or two months ago they were still a big fat zero.  I can stand for several minutes now without getting tired, only needing to occasionally lightly touch a walker for balance.  Once those accessory muscles get a bit stronger, I hopefully won’t need to use the walker for balance when standing.  Cynthia (PT) has indicated that her goal for me is to be able to use a walker for mobility around my apartment by the time I leave for Case in three to four months.  I would be ecstatic to be at that point by then, but if there’s anything I’ve learned through this ordeal it’s to not set arbitrary deadlines.  Granted her timeline is probably much more realistic than mine, but I’ll just take each day as it comes.

So while I’ve still got a long way to go, I’ve come incredibly far in the past year.  And I’ve got no intention of stopping any time soon.

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