In addition to being more busy lately, and thus more tired, there hasn’t been anything remarkable to talk about in my progress.  Things continue to move forward, albeit slowly.  I suppose that’s the real story at this point – no news is good news.

As I mentioned last time, I’ve started to take steps on the parallel bars. Since the last post, those steps have gotten a lot better.  The left knee extensor spasm/tightness that made it hard for me to bend and advance my left leg has gotten a lot better, and I’m able to take steps that look more like normal steps.  A big part of this has come because of the consistently increasing strength in the right quadriceps.  What I was once very worried would never come back is now making continued, marked progress.  It’s still not as strong as the left leg, but I no longer need Melissa to block it off from collapsing.  As a result, I can put more of my body weight through the right leg when trying to step with the left leg.  This means I can take the weight off my left leg, thus making it easier to bend at the knee and advance normally.  Funny how that works.

So without further ado, a photo from a recent session on the bars:

You can see the left leg is locked straight at the knee (Melissa’s knee is in front of it, although not touching it, just in case I am unable to keep my leg straight), and the right leg is bent at the knee and advancing from the hip.  Note the foot off the ground.  :)  Ritche, one of the guys there, is holding on to my belt just in case I were to fall backwards – he’s not providing any assistance.

At the suggestion of one of my other therapists, we’ve tried something new lately in addition to the bars – braces.  And no, not the dental kind.  One on each leg, they begin just below the pelvis and continue down to the feet where they force the foot to stay in neutral (at a ninety degree angle with the leg).  They inherently keep the knee from bending by providing rigidity and stability, and serve to help me focus on working on movement from the hips and pelvis.  Reciprocal movement in the region, which should help overall walking form.

I worked with the braces during three separate sessions on the parallel bars, increasingly getting better movement from the hips.  Then we tried on a walker.  I managed to get about ten to fifteen feet before having to rest, but that was with no assistance at all.  Unfortunately, being 6′ 4″ means they don’t have a walker tall enough for me, and the result is that more force goes through my arms than is supposed to.  And they get tired as a result.  One would think a top-notch place like Mount Sinai would have all of that on hand, but apparently not.  They’ve already got one on the way for me to use, though.

After five sessions with the braces, I returned to the bars without them last Thursday.  Although my hips were stronger, unfortunately it seemed to lead to a bit of a setback.  Melissa was out for two weeks, so I only worked with my other therapist with the braces.  Since my legs hadn’t been forced to support my bodyweight on the bars for those weeks, when I got back on the bars they were not up to par with where they’d been. The spasms have been worse in the hamstrings, causing my leg to bend back quickly at the knee.  Several times, I’ve wound up with both legs spasming and my body being held up entirely by my arms – both legs completely off the ground.

It’s been frustrating, but in the two sessions since then, things are getting back towards normal.  So while my legs are still slightly spastic when I stand and try to straighten them completely, they’re getting closer to where they were before.  And my hip and knee movements are more fluid as a result of the braces and the walker.  I’m confident that in the end, the braces will help.  Going forward, it looks like I’ll be walking on the bars twice a week without the braces, and once a week on a walker with the braces.  As soon as they get a walker tall enough for me, that is.  I think the balance of the two activities, coupled with continued walking and exercises in the pool, will prove highly beneficial in the end.

So here’s another picture, see if you can guess what it is:

Can you tell?

It’s the official practice/training facility of the New York Rangers, in Tarrytown, NY.  A photo I took recently with my phone.  Awesome.  I’ve been a Rangers fan since my dad first took me to a game at MSG when I was a kid, and that winter I started playing hockey myself.  I played through high school, and continued to be a big fan of the team and the sport.

So why am I posting this now?  Well, being such a fan, it was incredible to spend time where they practice, a place that is typically off-limits to the public.  But why was I there?  Well, I decided to start playing hockey again.  Sled hockey (they call it sledge hockey elsewhere).  It’s a version of the sport that allows players with any type of disability that prevents them from playing regular hockey.  Same rules as regular hockey, and it’s full contact.  You sit on a sled that has a skate blade underneath it (two blades for a little more stability until you’re comfortable enough to go down to one), and have one short stick in each hand.  At the end of each stick is a small pick that you use to propel yourself forward on the ice.

The team I joined happens to be called the Rangers, and we practice… at the official Rangers facility in Tarrytown.  :) Awesome.

Check out a video of the US paralympic team:

Pretty cool, huh?  We had our first practice of the season last week, and I had a BLAST.  Just like the guy says in the video, as soon as I went into the rink and smelled that ice rink smell, I was hooked all over again.  It’s somewhat like learning to skate all over again, because the balance is a bit different than on regular skates.  And it was only my first time out, so by the time I was done my shoulders were EXHAUSTED and my core was weak for days afterward.  Some of these guys have been playing for more than ten years and are pretty amazing on these sleds, so I’m not sure how much I’ll catch up to them anytime soon.  But it was so much fun.  I think I did pretty well for my first time on a sled, and I’m definitely going to be back for a lot more.  I’m hooked, and hopefully I’ll find a place to keep playing when I’m in Cleveland next year.

So yeah.  Let’s go Rangers!

After arriving at Mount Sinai, all of the attendings and residents made it clear to me that medical school certainly was not out of reach.  But I got differing opinions from people about surgery.  One friend that is currently a third-year surgical resident said that “all you need are your hands and the ability to move your head quickly throughout the surgical field.  Moving your legs isn’t necessary, since we usually are standing in the same place for hours anyway.”  I found this very encouraging, but still, who would really give someone in a wheelchair a shot at being a surgeon?  How would I get myself into position properly?  And how the heck would I get into an OR and maintain a sterile field?

In one of the rooms here at Sinai, they have inspirational stories taped onto the wall.  Many are about paraplegics and tetraplegics that remain very active after their injury: fishing, playing tennis and of course, the infamous Murderball quad-rugby players.  But one story on the wall particularly caught my eye.   It was that of Dr. Dimple Bhatt, a recent MD/PhD graduate from The School of Medicine at Stony Brook University Medical Center.  He was injured prior to medical school, completed his entire medical education in a wheelchair, and is now in the first year of his residency in neurology and psychiatry at NY Presbyterian Weill Cornell.  Those statements alone do not do his story justice – he truly has not let the wheelchair alter who he is, or what he is capable of.  It’s worth reading his whole story.

I’ve been in contact with a number of doctors who have told me stories of paras and tetras that have graduated from medical school and gone on to various specialties.  Radiology seems to be popular, as it is challenging and does not require extreme dexterity.  Many of the primary care fields are also an option, as are fields such as neurology and countless others.

Step 1, complete medical school in wheelchair: check.

While in rehab, I had learned about standing wheelchairs.  They literally convert from a regular, sitting chair into a device that can stand a person completely upright.  I was ecstatic.  These were the devices that would allow me to function in an operating room should I remain in a wheelchair for the rest of my life.  Standing was no longer insurmountable.  But still, how would I ensure sterility in the OR?  Would I need a separate chair that I would just keep at the hospital?  And what would be likelihood of any residency program directors giving me a shot, despite whatever my board scores turn out to be?

Enter the story of Peter A. Galpin, MD.  A recent addition to the blog’s Inspirational Stories section, he was the first person to complete medical school and become a surgeon from a wheelchair.  And he did this in the 80′s, long before today’s more socially conscious climate.  Heck, he even did part of his general surgery residency right here at Mount Sinai Hospital.

Because he wanted to prove that he didn’t need any special accomodations, he had a wheelchair company custom build a standing chair for him.  Throughout residency and thereafter, he worked from his standing chair.  He has gone on to become chief of surgery at his hospital, and now he has his OR staff all sitting.  This story has a great photo.

Step 2, perform surgery from a wheelchair: check.

Since finding out about Dr. Galpin, I’ve since heard of several more inspiring stories.  He references the story of a Stanford Medical School grad who is entering surgery.  I have heard stories from people close to family members, and found more on the web.  Surgery is definitely not out of the question.  Far from it.  It’s a challenging pathway for even the able-bodied, but there’s no reason the added challenge of doing it from a wheelchair has to be impossible.

If they can do it, so can I.  And I will, regardless of whether or not I am still in a wheelchair come time for residency.  I thank Dr. Bhatt, Dr. Galpin and those who have gone before me for being such an inspiration to everybody.

As somebody recently bound to a wheelchair (I am loathe to say “bound by,” since I don’t want to view the chair as something limiting), I know that people in public typically have no idea how to react to somebody in a wheelchair.  As a result, their actions range from kind to comical to borderline absurd to borderline offensive.  But I have found overwhelmingly that people almost always tend to be kind.  Even though they tend to over-compensate in their response.

I can see why people would be unsure how to act if they’ve never been around someone in a wheelchair.  Before the accident, I certainly would not have had any idea.  I’m sure I would have tried to open every door for them, hold things for them, move things aside, and generally… over-compensate.  Now on the other side, while I appreciate people doing things like that, at the same time it bothers me because the idea that I need help opening a door focuses on my injury and suggests that I actually need help doing those things.  And I know I am far from alone in these feelings.

I don’t expect people to know these things.  People aren’t mind readers, and having never been in my position, how could they know how I feel?  But I have some idea how they feel.  Uncomfortable.  It’s uncomfortable to deal with a person that you do not know, that has a disability that you do not know.  It’s a lot of unknowns and the more unknowns, the more uncomfortable people generally feel.

My friends have all been phenomenal when visiting.  Although it’s been obvious that a couple have been shaken up a bit or haven’t known how to react, most have not missed a beat and realize after a few seconds that I’m the same person I was before.  And from then on, everything is again normal.

So where does my lack of comfort come in?

I’ve written about my injury and functionality I have versus what I should have in the past.  At this point I still can’t walk, but I continue to gain increased control of muscles in my trunk.  When I got here, I had control and use of my fingers and hands – but they were a bit awkward at first.  My writing looked even worse than usual, my typing was clumsy, it took all my effort in both hands to change the channel on the remote control, and I couldn’t use a pair of chopsticks to save my life.  That’s all back to normal now.  So I don’t really know what it’s like to not be able to feed myself, or to be unable to answer the phone, or to not be able to scratch my nose when it itches like crazy.

After just over two months here, I was given a new roommate today.  I’ve been told my last roommate needed to be in his own room due to a medical issue, so we all played musical hospital beds.  My last roommate was tetraplegic – the correct and now universally accepted term for someone who cannot move all four limbs, the US being the one and only place that wasn’t already using it.  He needed to be fed, needed to be washed, and basically needed help doing everything.  We were cordial to each other, but we never talked more than a few words at a time.  But I didn’t know when I first shared the room with him that he was tetra – since we didn’t talk or interact much and he was sitting up in a chair, I had no clue what his injury or functional levels were.  By the time I figured it out and heard his story, things were already comfortable enough.

Interesting fact: the determination of whether somebody is para- or tetraplegic has absolutely nothing to do with whether or not they can move two or four limbs.  It is based upon the level of injury.  Damage to the spinal cord above the first thoracic vertebra makes the individual tetraplegic; damage at T1 or below makes one paraplegic.  Usually, damage in the cervical region correlates to the loss or affect of functionality from the neck down.  But since it doesn’t have to, there are quite a number of people around who are “tetra”(still commonly called quad) that have no trouble with their upper body. Go watch Murderball sometime to see what tetras are capable of when you add a bit of crazy.

And yes, I am classified as tetraplegic and not paraplegic.

Back to my roommate situation.  Today was different.  When I came into the room, my old roommate was no longer in his familiar chair.  I had a new roommate.  And there was no mistaking his severely limited abilities.  He was laying on a very unique, atypical hospital bed with all kinds of equipment connected to it.  All of it focused on ensuring he had no issues with pressure building up, and on helping his circulation.  I was stopped dead in my tracks.

With all of the people I’ve met here and the different injuries I’ve seen, I had no idea how to react.  We started talking, and he’s certainly nice enough.  One of the first things people talk about here is their injury – how it happened, what level it is, and whether or not it is complete.  He told me he’s been injured for twelve years, C5, he’s completely paralyzed below the neck, and he’s in the hospital for a pressure sore that got out of control.  They’re serious business, and it is true that a pressure sore is what killed Christopher Reeve.

He asked about me being able to use my hands, and what I could and couldn’t do.  I felt guilty saying that I could move my hands.  I didn’t want to tell him that I’m gaining functionality and strength back after working with the therapists.   I started trying to downplay the positive things I’ve been able to do here by talking about how I couldn’t do certain things when I first arrived.  I felt bad for wheeling by him several times, as if I was showing off what I could do.  I felt uncomfortable.

I started thinking about why I felt so uncomfortable, and I realized that guilt and uncertainty about how to act must be a big part of why so many people act awkwardly around people in wheelchairs.  I mean, if it even makes me feel uncomfortable after having lived in a chair for several months already, I can’t imagine how it would feel otherwise.

So I think I’m starting to understand your discomfort.

Interesting timing, as today’s discussion in Transitions (see this prior post for what Transitions is) was each individual’s choice of either guilt or loss of control.  Both are very real emotions that people with SCI face on a daily basis.  Some people lose more ability than others, and thus they have that much more control lost.  I may have (and will regain) complete independence, but that doesn’t make this any less easy.  As the day went on, I felt a lot better.

Then tonight while sitting (and dealing with one of those seemingly routine things), I suddenly got very upset.  Anger, sadness, fear..  It was one of those times where I just wanted to punch the wall or smash something.  I wanted to punch something.  Then I wanted to kick something; until I realized I can’t.

Very rarely do I want to vent anger in a physical way.  And even more rarely do I hit even a pillow.  I didn’t end up hitting anything, but the sadness was overwhelming.  I did, however, end up shedding several tears.

Is this it for me?  Will I walk again?  God, why do I have to deal with all of this?  Why does life have to be so complicated?  This sucks.  A lot.

It’s hard to maintain faith sometimes.  Especially as time goes by and lots of little things happen but none of the big things do.  But I try.

I was picked on to speak first by the psychologist running the group because “you’re such a smarty pants.”  I told the group that the first several weeks post-injury, I was still pretty much in shock.  The reality of it all certainly hadn’t set in (I still don’t think it all has – it will take a while for it to set in, and part of that will come with dealing with the real world) and even after a few weeks, although I started to realize how different things would be, I still wasn’t happy about things.

I shared that I look to people who come back as out-patients, those who have been in a wheelchair for a long time around here and those I know of elsewhere who’ve been in a chair for a long time.  They all say it took years before they fully came to terms with what happened.  Regardless of whether or not I walk again, I know it will take years for it to all sink in.  Apparently that’s something most people don’t realize after only six weeks.  A lot of that realization for me comes from the program here and the people it puts you in touch with.  Those who’ve lived with this for longer.

We bounced around the room going from out-patient to in-patient to out-patient and so forth.  Then one of the newer in-patients spoke.  His injury was eight weeks ago (mine six), but he’s only been here for two weeks or so.  He said to the entire group that his therapy is at the same time as mine, and so he always sees me in the gym.

“I watch Chris working and pushing himself, and I see the progress he’s making.  He’s my inspiration.  Watching him make such progress inspires me to work harder and push myself so that I too can get to where he’s gotten.”

Wow.  I was absolutely floored by the comments and honestly didn’t know how to react right away.  While I said thank you, it wasn’t enough.  Later in the gym during therapy, we saw each other working out and I waved hi at him and he told his therapist “there’s my inspiration!”  I thanked him again for his kind words and told him how much it meant to me to hear that and how touching it was.  We both encouraged each other to keep working as hard as we have been, and that’s how we can move forward.  Such a kind person, I will definitely be getting to know a new friend better before leaving.

Later in the day, in wheelchair mobility, I was giving the therapist a hard time about the setup and telling him it was too weak and non-challenging.  So he grabbed several ramps and curbs (to simulate how to get around on city streets) and setup a course that involved going up and down two inclines, going up a ramp to a four-inch curb drop to the ground, and then popping up a two-inch curb.  He told the others to stop before the four-inch drop, turn around and back down.  Then he told me to wheelie off it instead.

I rolled past the first up and down ramps with no problem and got up to the edge of the four-inch curb.  He had a strap attached to my chair to be sure I wouldn’t fall.  I popped up into a wheelie near the curb, slowly moved forward and then pushed right off the curb landing on my back two wheels and letting my front casters come down the ground.  It was definitely a LOT smoother than I thought it would be.  I didn’t have to worry about moving my weight forward or backward in the wheelie, I just maintained my existing balance and went right off the edge.  Then popped up over the two-inch curb and used momentum to roll right up onto it with no effort.

On the way back, I wheelied down off the two-inch curb without a problem, then popped my front wheels up the four-inch curb and had to work to push the back wheels up, popped down the ramp, then over the last incline/decline ramp.

All-in-all, it was a heck of a lot of fun.  Wheelies are incredibly fun, and they make some things much safer and easier – if one is careful and follows the right safety precautions.  Don’t try this stuff at home without a properly trained therapist to catch you before you crack your skull open.