But first, a much-needed progress update.

I’m going to let you in on a little secret – it turns out doctor school is a lot of work. Now, I know that may come as a surprise, but it really is. After making the move to Cleveland in June in preparation to start school, I got caught up tying up some loose ends on technical projects I was involved in as well as transitioning my physical therapy to local resources, getting moved in, and getting ready to start school. Once school started, I had to basically learn how to be a full-time student all over again Suffice it to say, it has taken a while to really get on track managing my time efficiently again.

For the first month after moving to Cleveland, I started doing my PT at MetroHealth. They’re one of fourteen (or eighteen – hard to tell from the various online resources) centers in the US designated by the National Institute on Disability and Rehabilitation Research as a “Model Center” for SCI research and rehab. Sinai in NY is also one of them. My docs in NY had recommended I get in touch with a particularly qualified physiatrist based at Metro, Dr. Greg Nemunaitis. So I did.

Rehab there went well, but since Metro is on the other side of Cleveland, it wasn’t a practical solution once classes started. So under Dr. Nemunaitis’ guidance, I transferred my care to the rehab department of University Hospitals, one of our teaching hospitals. Since it’s on campus, it’s ideal.

When classes started, the focus of block one, our first six weeks, was on epidemiology and public health. As part of it, we were all given pedometers and told to keep track of how many steps we all take within a given day. There was a recently discussed recommendation that everybody try to take 10,000 steps each day for better health. So the faculty wanted us all to take the 10,000 step challenge as well, and they made a competition out of it.

Although 10,000 steps was more than just a bit overly-optimistic for me, I spoke to the people running the challenge and suggested that I keep track of my steps but be allowed to use a multiplier. I wasn’t expecting to break any records, but at the very least it would give me some guidance as to my progress. And knowing me, having a concrete metric to measure my progress by would make me push myself that much harder.

So for the past three months I’ve been keeping track of how many steps I can walk within a given day. So rather than describe it, here’s a picture:

The thicker line is actual steps at a given point of measurement, and the thin line is the five-day moving average.  The dip that occurs in September was due to some recurrent problems with my knee.  It seems I’m going to always have to be conscientious about it from this point on.   Regardless of that, I’ve moved from a max in the 500-600 range when I first started three months ago to a current best of 1200 steps in a given day within the past couple weeks.  So I’ve doubled my progress in that time.  Not bad, I don’t think.

Also, the moving-average has improved from around 600 in the beginning to around and above 900 recently.  Including the dip in September, I think that’s pretty good.  Both Cynthia (my PT back in NY) and my current PT didn’t feel there was any problem with me walking by myself at home, so I’ve been doing just that since July in addition to regular PT.  One of these days, I want to try walking to school in the morning, with a friend walking the chair.  PTs and doctor have all said that’s fine, and obviously I wouldn’t do anything crazy like try to walk across the street or through traffic, but it would be a good exercise.

Additionally, my steps have gotten more regular and more properly formed.  Although I’m far from walking normally at this point, I’m able to take a series of steps in succession without pausing between each one.  My current physical therapist has been putting a lot of emphasis on proper form, and I think this has a lot to do with it.  Both of my heels typically hit the ground first, as opposed to the balls of my feet (which has only started to happen consistently within the past few months).

I’ll continue to post updated versions of this graph from time to time, just to give an indication of my progress.  And maybe one of these days I’ll record a video.

So that’s where I’m at, recovery wise.  There probably won’t be any major milestones any time soon, since the process is slow.  But I figure as long as I can keep making that graph go in a generally upward direction, I’m in good shape.

I’m thankful for my health and current physical abilities.  I know this may seem counter-intuitive, but I have to consider how much worse things could have been.  I’m lucky to be alive.  If my injury had been a mere one or two inches higher up my spine, the injury could have killed me.  My fall could have resulted in a traumatic brain injury that would have changed the very core of who I am – but it did not, and for this I am grateful.  I could have wound up with a complete spinal cord injury with little to no prospect of ever even feeling touch below the level of injury.  The damage could have been so severe as to render my fingers and hands completely useless, thus decimating any hope of fulfilling my goal of becoming a surgeon.  But it was none of those things.  For the simple fact that I’m still here living, I am thankful for every new day I have to live.

My injury was catastrophic.  The type of catastrophe that nearly every doctor and physical therapist I spoke with originally thought I would not come back from.  Now, I’ve always been persistent when I want something.  And while professionals have a wealth of experience that cannot be underestimated, faith and persistance may just be that certain unexplainable set of factors that cannot be quantified.  I’ve never given up hope that I will walk again, and I’ve never stopped trying to get more function back.  Most thought I would not regain functionality below the level of injury, and even if so, that it wouldn’t be enough to be considered useful.  Since then, however, the doctors and therapists I work with have all agreed that my prospects are vastly better than they were in the first few months after I was injured.  I’ve surprised everybody who saw me at the time of my injury with what I’ve gotten back.

Last week while discussing things with Melissa, my physical therapist, she stated with caution that while she thought I was capable of getting up on a walker and potentially walking with no assistive devices whatsoever, she couldn’t possibly begin to estimate when that might be possible. She said it would be likely that I will be able to walk on a walker by the time I leave for Case, but it’s not likely that I will be able to use a walker as a mode of transportation by then.  Which is fine with me – progress is progress.  But she also followed that up by saying that when she first evaluated me four months ago in late July, she thought that at some point in the future walking might be a possibility, but she never would have expected me to be where I’m currently at within our first four months of working together.  I’ve surprised her too.

I’m thankful for all those excellent doctors and therapists that have helped me over the past ten months. There have already been so many, and I know there will be more before this ordeal is not the primary focus of my life, and there is no chance I would be anywhere near where I am without them.

I’m thankful for you – everybody who has been there and provided support, thoughts, prayers and assistance along the way.  This is not the type of experience anybody should ever have to go through alone (well, it’s not the type of experience anybody should ever have to go though, period), and fortunately I haven’t had to.  My family and friends have truly been a blessing, especially the love and support Kristina has given me since the very beginning.  She’s faced this challenge with me with more strength than I could ever ask of anyone, and the accomplishments are every bit as much ours as they are mine.

Now, I don’t mean for this to sound like a cornball acceptance speech or like I’m writing the introduction to a book.  But when I reflected on things this Thanksgiving, these were the things that dominated my thoughts – not how horrible it is that I’ve had to deal with a spinal cord injury.

I’m thankful that I will be going to medical school next year at Case.  Since childhood, I’ve wanted to become a doctor.  Running a business and working in the information security and technology world was a pleasant detour on the way and security will always be a passion of mine, but my goal has always been medicine.  Although I was originally to start this year, deferring was a smart decision and I look forward to starting next summer.  And I couldn’t be starting at a better place for me than Case.  It’s funny, I had heard of it before I started planning which schools I would apply to, but not much more than that.  Then somebody I randomly crossed paths with suggested that it might be a good fit for me.  So I gave it a closer look, and it turned out to be an incredible fit.  I fell in love with the school on interview day, and had decided on it pretty much at that point – before I was even accepted.

Since then, dealing with the faculty has been an amazing experience and they’ve gone out of their way to help me make sure all the critical pieces will be in place before I start school in the summer.  And that doesn’t even begin to consider how thoughtful the students are.  I’m thankful that the place I’ve chosen to spend the next four years at is the right place for me, and has the right kind of people.  And for everybody who’s helped to make the dream into reality.

So I do have a lot to be thankful for this year, despite what the obvious may suggest.   And what would my overly-effusive thoughts be without an update.  After my recent seeming setback, I’ve come back stronger than before.  I have since walked on a walker with braces again.  While I could previously walk ten to fifteen feet before needing to rest, I was able to walk more like thirty feet before having to rest.  And I increased the number of times walking from two to three at the same time – and then some.  During those trips, my legs also felt a lot stronger.  Although the braces keep them from bending at the knee, I can feel the vast difference in how much the muscles in my legs are contracting to help me stay upright.

The strength has translated to walking on the parallel bars without braces as well.  My steps have recently become a lot more controlled and proper, rather than just moderately jerky movement in a forward direction. Then a week-and-a-half ago, at the end of a trip down the bars, I decided to try letting go of one of the bars while standing.  My balance and trunk control felt a significantly improved, so I told Melissa I was going to let go with both hands.  She was in front of me in case anything went wrong, and my chair was immediately behind me – and it’s not like I threw my hands in the air, they were only an inch from the bars.  So I let go.  And stood upright, completely unassisted, for at least five seconds before my trunk started to slowly lean in one direction.

I caught and re-steadied myself, and then did it again.  And again.  I’ve since made this a routine part of every trip walking down the bars, continually trying to improve my free-standing time.  Funny, the more I do, the more my endurance continues to improve and my recovery time before the next trip down the bars decreases.

Then last Wednesday in the pool, I shared this experience with Cynthia and she suggested trying the same thing in the pool.  She had been working with me to slowly use my arms less and less, so she was excited at the possibility of free-standing in the pool.  Now, mind you, when I discuss pool therapy, we’re only in water that is between three and four feet deep.  So it really only goes to my waist.

I stood up in the pool, moved my hands from the edge of the pool to holding on the Cynthia for support, and then slowly lowering them and letting go of her completely.  Again, I was standing fully upright.  But this felt a lot more steady than a week before that on the bars.  She started watching a clock, and when a spasm in my left calf muscle threw my balance off, and my time was up.  But not before reaching a full minute of standing time.  With no assistance, other than the force imparted upon my body by the water.

So there you have it.  I do have a lot to be thankful for.  Now maybe if I’m lucky, I’ll get to start walking on a walker for Christmas…  ;)

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!

Don’t get me wrong, it’s not like I don’t have a significant goal to reach for and focus on.  Far from it.  In fact, I’ve got a goal much more challenging and difficult to achieve than any I’ve been faced with before.  More difficult than losing a parent, more difficult than working full-time while in college (which really isn’t too hard, unless you over-extend yourself the way I did one year – good thing I learned from that),  more difficult even than getting into medical school.  But there’s a big difference in how those challenges have forced me to grow, and how the current challenge’s physical orientation leaves my mind with a lot of time to wander while pushing myself in therapy or the gym.

And don’t let me give you the idea that the rest of me is just lying stagnant while I push the body to grow and strengthen.  The Greeks would be proud, as I daily nurture my mind and soul.  I’ve been doing my own information security vulnerability research (the field in which I worked prior to medical school), learning things to the depth and breadth that I had always wished I could while I was too busy running a company and providing services to clients.  I’d go into depth about what I’m researching here, but it’s not that type of blog.  :)  Although I may start writing a second one soon… but I digress.

I’ve also been nurturing my artistic side by spending a lot more time with photography and music than I had been immediately prior to my injury.  Prior to returning to school to complete the academic work necessary to apply to medical school and preparing for the MCAT, I used to broadcast two weekly Internet-radio shows: one on a Sydney-based station, another on a New York-based station.  Due to time constraints, I had to give up both shows and put my music pursuits on hold.  Studying for the MCAT while taking twelve credits and working fifty hours per week was the straw that broke the DJ’s back, as it were.  Finally again I am able to dedicate the time and energy I used to, and it feels incredible to have that outlet once again.  I’m entertaining the idea of starting a weekly show again, which I had intended to do upon reaching medical school.

It sounds like I’m doing a lot, but I used to do these things while working full-time and going to school.  Looking back on it, I have no idea how.   People told me back then they didn’t know how I did it, but it all felt natural to me.  Now my days are filled with physical therapy, exercise, typical daily tasks (which take a lot longer than they used to, and are thus a significant source of frustration), security research, music and spending time with those who are important to me.  Time-wise, I’ve merely replaced school and work with physical therapy.  But it feels odd not to have some major milestone that I’m pursuing.  Again, I realize that walking is a huge milestone.  But it feels different, because it doesn’t mentally exhaust me.  Emotional exhaustion is a whole other story (and a whole other blog post).

And thus, the weeks seem to be passing me by insanely quickly.  I realize how long it’s been since I last posted something, but it seems so recent in my mind.  Just about a month.  It’s already been three-and-a-half months since I was discharged from the hospital.  The whole summer has rushed me by and it feels like I just got home.  When I came home, I had set the completely arbitrary goal of taking my first steps in a walker within three-to-four months.  There was absolutely zero medical basis for that goal, it was just something that felt like a good goal to set for myself.  That time is almost here, and I’m *almost* at that point.  Melissa, my therapist, today said she’s even feeling frustrated that I haven’t been able to start taking steps on the parallel bars.  She agrees that it’s all because of the significantly lagging right leg, and that the left is more than ready to move on to taking steps.  Despite my prior fears (geez, even that was over two months ago), the right quadriceps are finally starting to fire, as I’d mentioned before.  They’re getting stronger, and now when I dangle my legs and try to kick, the right one does move between four and six inches.  Progress is progress, but progress is slow.  Four months might be just a bit out of my reach (but thankfully, it doesn’t seem to be entirely too far off).

My best friend’s wedding was this weekend.  We’ve known each other for fifteen years already, and we’ve been through so much.  We grew up together, and have seen each other through a lot.  We’ve watched each other grow and change, all the while never losing who we were.  He taught me the meaning of brotherhood, and it’s fun to think about where we thought our lives were going back then and where they’re at now.  Surprisingly, we were both pretty accurate.  It still felt weird to make him say “my wife” for the first time after the wedding, though.  He said it a few more times, and it still feels really weird.  I’d never been anyone’s best man before and I’d never given a speech at a wedding before, so I wasn’t sure exactly what kind of thing to say, but I thought of a few important things and just nervously went with the flow.  It seems to have been well-received.  They’ve been together for what must be close to five years now, and I wish them both the best.  I think they’re really perfect for each other.

I saw a lot of old friends this weekend, a few for the first time since the injury.  I was surprised with how well I dealt with seeing so many people and talking in front of over one hundred people – I thought I was going to feel a lot more uncomfortable.  It helped that I knew a good number of those present, and I also realized that I’m only nervous or uncomfortable the first time I talk to somebody.  After that, it’s completely fine.  I think I’m always nervous that people will think there is something mentally wrong with me because I’m in the chair.  I’ve heard stories from others to that effect – waiters asking people what an individual in a chair would like, as if they are incapable of ordering food just because they’re in a wheelchair, or other such nonsense.  It still surprises me when people I don’t know treat me perfectly normally, which is far more often than not.  It’s as though I expect everybody to treat me differently, and I still carry that fear with me.

A year seems like such a long time, but exactly one year ago now I was arriving in Cleveland for my first medical school interview, at Case Western.  I had prepared myself intensely: written and reviewed all my notes, re-read my primary and secondary applications, done several mock interviews, and thoroughly read over the school’s web site.  Additionally, I had gotten in touch with a friend of a friend who was a first-year at the time.  He agreed to let me stay with him while I was in town, and to let me attend classes with him the day before my interview.  For some reason, Case felt like the right choice, so I arrived three days before my interview and stayed at a hotel in downtown Cleveland so I could check the city out.  It was a Saturday night, September 8th, before a Browns vs. Steelers game, and I quickly learned how much that takes over a city like Cleveland.  I found some good restaurants downtown, walked around a lot and explored the neighborhoods in the small downtown area.  Then I headed out near Case to meet up with my host and see the area more closely.  It’s strange to think that one year ago, I was so wrapped up in the medical school admissions process and had no idea where I would wind up when it all came to completion.  Even stranger to think that one year later, my life has taken such a strange turn of events.  Case is well-known for attracting and admitting “bent arrows,” students who have had other careers before pursuing medicine, and my life has certainly become even more bent than it was before.

It’s hard to believe that it’s already been nearly eight months since I was injured.  I get scared sometimes that I’m not moving fast enough, that I’m not progressing enough within the allotted time.  Deep down I’m sure that’s a huge part of why time seems to be passing me so quickly.  Just over a week ago, Melissa did a re-eval necessitated by my insurance company for approval of more visits.  During the eval, she assessed my functionality below the level of injury and assigned numerical values to muscle strength.  It was encouraging to see that some of those numbers have changed a fair amount within only a month of working with her, and knowing that helps me to stay positive that therapy is working and that I’m moving forward regularly.

The eight months since my injury have all flown by me so fast, and yet it all seems so distant.  My memories of daily life prior to my injury are non-existent.   All the little insignificant things I used to do every day are the hardest things to remember.  I have no idea what it feels like to be able to easily move my legs without thinking about it.  I have no idea what it feels like to shower standing up.  I have no idea what it feels like to only have to spend fifteen minutes getting ready in the morning.  Those are only some of the things I can’t comprehend anymore.  Strange that the things we do every day can be so hard to remember, but given their immemorable nature, it makes sense.  Life without a spinal cord injury really is just a distant memory to me at this point.  And yet it also is held in my hope for the future.  Some day I hope daily life with a spinal cord injury is but a distant memory.

I should preface this by also adding that this past Monday at Mount Sinai, I tried something new I’ve been wanting to for a while.  We started the session by getting into the standing frame, which I’d been wanting to do the past few sessions.  A standing frame is a device that basically helps you stand without the risk of falling and hurting yourself.  First, you sit on a big padded seat, which is connected to the backrest by a hinge.  This allows the two to open up relative to each other.  There is also a big padded block that gets adjusted so it is tight (not too tight!) against the knees.  What this does, effectively, is lock your knees in place so they can’t move at all.  Additionally, the feet go into contoured footrests that prevent them from sliding.

Then a hydraulic handle is pumped, and it lifts the seat upward while opening up the angle with the backrest.  The net effect is that the device literally stands the user upright.  There is also a pad about chest-height that keeps the torso from flopping over forwards.  This is especially necessary for those individuals that have compromised trunk strength and cannot keep their upper body upright on their own, due to things like, oh, I don’t know, high-level spinal cord injury.  But I don’t know anyone like that.  ;)

Some images will probably help clarify it, so I swiped these from a vendor’s site to show the sitting and standing orientation:

My therapist adjusted it so I was almost upright, but allowed some room to attempt to contract my muscles a bit.  I was able to start getting some good contractions out of my quads.  Additionally, I was able to move my pelvis forward (which is quite important for walking) and get my butt off the padding on the frame a bit.  This was even new to her since I began working with her, which was only roughly a month ago.  I was feeling particularly energized and strong, and mentioned to her that I wanted to try getting on the parallel bars sometime soon.  No more than a few seconds later, we had both agreed to forgo the standing frame and head over to the bars.

I’d already done a fair amount of standing in the kitchen of my apartment, but in that position my arms were in front of my body and it is nearly impossible to get my body fully straight.  And I did manage to stand on a walker one day in therapy, but that’s a challenge in and of itself.  Since I have to pull on the walker a bit for support while getting upright, it takes balancing and assistance from two people to help me stand up and keep my knees supported so they don’t buckle under me.  But I do enjoy both.

I wheeled into the bars, we adjusted them for my height, and my therapist and a helper got ready.  I managed to pull myself upright fairly easily, and I was surprised at the ease with which I was standing.  On the first attempt, Melissa (my therapist) was blocking both of my knees with her legs since we didn’t know whether or not my muscles would cooperate.  I stood up for a minute or two (maybe longer, I wasn’t paying close attention), then sat down to rest.  On the second try, Melissa was able to move her leg completely off my left knee as the muscles were contracting enough for me to put my body weight into the leg without it buckling. I stood up six or seven times, each for several minutes, and at a few points even took my left hand off the bar for five to ten seconds.

I cannot begin to express how it felt to be upright, on parallel bars, standing with minimal assistance.  It was at this point that I also realized how much work the muscles in my right leg were doing.  When I spoke to Melissa about it after, she expressed surprise at how much less support she had to provide to the right knee than expected.  I’ve been worried about the right quadriceps for a while, and over the past couple weeks I’ve started to notice that I’m able to contract them a bit.  Nowhere near as much as the left leg, and nowhere near normal, but still, after many months of waiting, the muscles are starting to contract and my worry is starting to subside.

It was while I was standing that I realized I really, truly believe I will walk again.  It’s not just a maybe or a hopefully, I can do this.  Doctors have told me it’s possible, as have therapists and people around me, and although I always wanted to believe it, a part of me always held on to the “what if I don’t?” idea.  But while I was up on those parallel bars, shifting weight back and forth between both legs, and feeling the muscles firing to help me stand, it really hit me.  I can do this.  It’s not going to be easy, and it’s going to take a long time, but I can do this.  And it felt amazing.

Back to today.  We got to the YMCA and as we got ready to get into the pool, the lifeguard realized that the chairlift wasn’t working.  I had never noticed these things before the membership coordinator at the YMCA pointed it out to me when I was first signing up, but they help people get in and out of the pool who are unable to use the steps or ladder.  It’s a seat attached to a lift, so I can just transfer from my wheelchair into the seat, then the lifeguard flips a lever and the seat rotates over the pool and slowly lowers me in.  The inverse makes getting out a snap.  But today, it wouldn’t be so easy.

Getting in wouldn’t be the problem.  I can certainly just flop over into the pool easily.  Or propel my wheelchair forward REALLY fast, then lock the brakes up right in front of the pool so I fly out.  (No, that’s not what I did ).  Getting out would be much harder, though.  Rather than give up, the lifeguard felt they could get me out without too much trouble.  With two big lifeguards and a therapist who’s strong herself, I figured it wouldn’t be too big a deal, so I transferred from the seat to the floor and then slid into the pool.  No harm, no foul.

Right away, I put my arms on the edge of the pool and stood up almost effortlessly.  The last time we were in the pool, I was able to stand up, but it certainly took some work.  I was surprised at the ease with which I got up this time.  The legs spasmed a bit, as they always do when I stand up, but after putting some weight into them they calmed down and started to listen to me.  The right needed to be blocked from buckling, but I did start to get weight into it and it started to contract.

After standing numerous times, it was time to take some steps.  With my left hand on the edge of the pool and my right arm firmly on my therapist’s shoulders, I pulled myself upright and steadied my body.  With my weight in the left leg, I lifted the right leg a bit and swung it forward from the hip flexors.  Wow, that didn’t work that well the last time. I still needed help blocking the knee on the right leg, but I was able to get weight into it and rotate my pelvis a bit while I swung the left leg forward to take a step.  I was able to take three steps with each leg before needing to rest, but the steps were a lot more solid than the previous time and they looked a lot more like normal steps.  Granted I couldn’t do that even in the pool without the support, especially on the right leg, but it’s progress.  It’s significant progress, seeing as it’s barely been three months since I first wiggled that toe.

Sometimes I surprise myself.  I’ve never been a fan of patience.  When there is something I really want to learn or do, I put all my effort into getting there.  And often, it consumes a good chunk of my life.  But this process has taught me patience.  Yes, I want to walk and stand right now.  But I’m ok with how much time this is going to take.  As I continue to make progress in slow, steady bits, I’m happy.  It may take me two or three years before I can walk on my own, and it may take another year after that before I can completely ditch the wheelchair.  But as long as I’m moving forward toward that goal, I am completely fine with that.

A lot has happened in the two weeks since I posted. Crawling is still an integral part of my therapy, and last week I picked up a significant speed gain. When I lift my knee and contract the hip flexors to bring my knee forward, I’ve started really almost throwing my knee forward. When Kristina saw it, she was quite surprised. Having heard that I was crawling but never been home to observe it, she expected the short, choppy movements from the first time I tried to crawl. Now I’m crossing the 15+ foot floor with strides that belie the severe damage that was done to my spinal cord. I think I’m ready to start taking on a few babies – maybe even some that are a few months old.

Three weeks ago, I went to a follow-up visit with Dr. Anant, the neurosurgeon who put my neck back together again. I hadn’t seen him since I was discharged from Lutheran Medical Center to Mount Sinai in early February. At that point, both of my arms and hands were incredibly weak, I couldn’t hold my body upright when sitting, and my manual dexterity was significantly weakened. I certainly had no movement in my legs, and the prognosis was bleak at best. Many of the medical staff, unbeknownst to me, felt the likelihood of my walking again was very low. Even when I arrived at Sinai, the assessment was the same – there’s always a chance for things to return, but walking? Statistically not very likely.

When I showed Dr. Anat how much my legs were moving, and his examination revealed the significant return in upper body strength, he was ecstatic for me. He said the progress was amazing, and he was very optimistic about my chances of walking again. “It may take two or three years, and you might need leg braces or something to help stabilize your ankles, but things are looking good.”

Such a positive opinion from a skilled neurosurgeon was worth a lot in my mind, and really lifted my spirits. It really made me think about how far I’ve come in the five months since I was injured, and how much progress is still yet to be realized. It felt good. It felt better than good.

Then he hit me with a bombshell. “This is all incredible. Now you need to get into Kessler as an inpatient for another six months.”

Wait, what? I was just discharged a month ago and I’ve just gotten adjusted to life on the outside again. I’d lived in the hospital for four months. I still remember what it was like to have no less than five different people each day see me stark naked for one reason or another. I had just spent a month in the hospital trying to locate a new apartment to live in while simultaneously being a full-time patient. I’d coordinated a move of my entire apartment (thanks to Kristina and some friends of mine) from the hospital. I’d just completely restructured my entire life from a hospital because the doctors all felt I was ready to go home, and now I need to completely undo it all and check into an inpatient facility in New Jersey?!

For days after, I was shellshocked. The thought of living in a hospital in the suburbs until Christmas, far enough outside the city to make it difficult for people to visit, was further from what I expected than I thought possible. I literally had no idea how I was going to manage it all. But I did my best to follow his recommendation, and made the calls to see if it was truly an option.

While in Mount Sinai, I submitted a Medicaid application. Since I can’t work and private insurance only pays out so much, I needed Medicaid to keep me in Sinai for more than one month. Yes, my private insurance only provided thirty days of inpatient rehabilitation, regardless of my actual medical condition. Thankfully, Sinai took my Medicaid-pending status for payment of my hospital bills. If they hadn’t, the costs would have risen to well over $300,000. I’ve seen the claims they submitted. Mount Sinai has a Medicaid office on-site, and they were able to file the application that I had an attorney prepare for me.

The problem with being Medicaid-pending is, while the place that submitted it for you will take it, pretty much everybody else will refuse it until you are Medicaid-approved.

I called Kessler and managed to find my way to the inpatient coordinator. They said that since I’d already been discharged from another inpatient facility, I would have to schedule a visit to Kessler for an evaluation. They seemed dubious of my need to be checked back into inpatient after being discharged, but when I explained that my neurosurgeon had told me this is what I need to do and would provide documentation indicating that, they agreed to schedule an appointment. But first, we needed to figure out if it could even be paid for.

Yes, they take Medicaid. But not New York Medicaid, since it is out-of-state. I spoke to my Medicaid attorney, and he told me that out-of-state services CAN be paid for by Medicaid if the services are unique enough as to be unavailable in the home-state. I shared this information with Kessler, and they said all they would need is a letter from NY Medicaid stating that they would agree to pay for services. Unfortunately, I later discovered from somebody in my attorney’s office (and not my attorney himself), that such a letter can only be obtained once you are Medicaid-approved. Not pending. If you’re pending, do not pass go.

So with my insurance already drier than the Sahara and Medicaid not an option, Kessler was not an option. I had already tried to locate a suitable outpatient facility in Brooklyn that was covered by my insurance, to no avail. And of course, none of them would accept my Medicaid-pending status. The only facilities that were in-network for me had little to no experience dealing with patients with spinal cord injury, and I need specific expertise for rehabilitation.

Since then, I’ve been in touch with Mount Sinai and it looks like I will be returning there as an outpatient. It’s a hike from my apartment, and it will be a pain to get to, but they have a very ample facility, extensive equipment specifically geared towards SCI rehab, and most importantly, they are staffed with therapists and physiatrists who deal exclusively with SCI. So I will get the care that I need there. This is becoming increasingly critical, as the in-home PT that I’ve been receiving up until now is also almost out of insurance coverage. I haven’t started yet at Sinai, but I expected to have an appointment within a week or two to begin the intake process.

Medicaid and insurance have sucked up a LOT of my time during this whole process, and added an unnecessary level of stress. I also find that the majority of people involved in providing care (physicians, therapists, nurses, etc) do not have an intricate knowledge of how the process works. Not that they should – their jobs do not involve advising on the intricacies of the public support system. But when I explain to them how difficult it is to get things processed or approved, they all seem shocked. Medicaid is supposedly easy and a quick approval if you have zero financial resources. And I mean zero. The minute you have a few dollars, it’s suddenly a whole different ball-game. As usual, the very poor and very wealthy are fine, but the vast majority of us in the middle are the ones that suffer. But I digress, and this isn’t that kind of blog.

Next time, more pleasant news on some exciting therapy I’ve done lately.

Oh, and I’d like to say a big hello to everybody visiting from the Case Western community! For those that don’t know, Case Western Reserve University is where I will be attending medical school next year. I can’t speak more highly of the school, and I’ve felt welcomed there from my interview day. Even when I was just a lowly applicant who had a question on his secondary, Mrs. Rosenblum was genuinely kind and thoughtful to me on the phone.  Heck, after I was accepted, my interviewer offered me a spot doing research in his lab. Since sharing the details of my injury with the admissions office, they have gone out of their way to make me feel welcomed by the Case community, and that Case will do whatever it takes to ensure that my injury does not prove too significant a liability to complete the curriculum.

And the notes I’ve since received from students have been awesome to read as well. I’m really glad to he calling them my colleagues next year.  Although as a native New Yorker I never thought I’d say this, I can’t wait to move to Cleveland next year.

I’ve never been one for patience. Patients, yes, I want those at some point; after appropriate training would be a good idea.  Right now, though, the idea of having to wait a long time before I can walk is very frustrating.  There are no certainties as to whether or not I will, in fact, ever walk again.  But I try to stay hopeful as much as possible, even knowing that if I am to walk again, it is going to be a long time before it happens.  I thought this would be a good time to write about the progress that I’ve made since my post about kicking people.

I still enjoy giving people a good kick.  In fact, I was at my cousin’s wedding this weekend and my family all wanted to be kicked.  Ahh, the love of family.  ”Kick me!”  Quite discouraging to me at this point, however, is the fact that my right quadriceps muscle has not woken up yet.  Because of this, I’m still only able to kick with the left leg.  Now, after my left hip adductors and toes came back, the quadriceps was one of the first muscles to return as well.

At this point, I have a lot of movement in the left leg: I can kick (quadriceps aka knee extensors); I can bend the leg backwards at the knee somewhat – I just bent the knee flexor against gravity while lying on my stomach today for the first time; I can move the whole leg more midline (hip adductors); I think I can move the whole leg away from midline a bit now (hip abductors); I can rotate internally/externally from the hip; I can bend the ankle up and down; I can lift the knee up towards my chest while lying on the ground against gravity – this is something I could not do when I was discharged from Mount Sinai (hip flexors); I can wiggle my toes in both directions; and I can generally evoke movement in most directions at this point.  Endurance and strength are another issue altogether, mind you, but the fact that movement is there is excellent.  Muscles begin to atrophy after a few weeks of inactivity and with every contraction I’m fighting the atrophy that begin on January 27, 2008.

I have a good portion of these actions in the right leg as well, to a much lesser degree though.  The right leg came back significantly later than the left, and although it too is getting stronger, the lag is very frustrating.  Especially considering that the quadriceps is still not firing.  I’m very nervous about it atrophying.  The longer it takes to begin firing, the more muscle is lost and the longer it will take to catch up.  I spoke to Dr. Stein about it before being discharged, and he said that it’s quite normal for one side to come back earlier and stronger than the other.  This is due to the asymmetrical nature of damage to the cord in real-world spinal cord injuries.  Damage is never perfectly symmetrical across the entire cord, much as our minds find beauty in symmetry.  When I saw him for a checkup two weeks ago and again expressed my concern about the right quad, he simple said, “Something’s got to come back last.”  His confidence did put me at ease a bit, but I’m still nervous about it (or I wouldn’t keep writing about it).

Contracting these muscles takes a lot of effort for me, and the challenge is doubly compounded by my inability to feel when specific muscles are fatigued.  I still do not feel pain much below the level of injury, although in some hyper-sensitive regions it does appear to be slowly coming back.  As a result, I do not feel the lactic acid buildup in muscles that normally cues us in to our bodies being tired.  Instead, I must discern from the suddenly limited movement that results from my neurological directions.  Although when considering the years I spent in the gym prior to the accident, not being able to feel lactic acid buildup probably lets me truly push myself to muscle failure.

Quickly move your fingers up and down repeatedly.  I bet you can do other things at the same time, as directing your fingers to move does not take much effort.  This is good – this is what is supposed to happen.  My fingers likewise move without any extra effort on my behalf.  Now tap your foot on the ground quickly, then lift the upper part of your leg off your chair.  If you’re not spinal cord injured, this should also be just as simple.  But for me, not so.  While the movement has become far easier to evoke than when it first came back, moving the majority of the muscles below my level of injury requires a concerted effort.  Imagine if it took straining as much as when you’re lifting something heavy just to lift your leg off the chair, and even then it only moves a few inches.  That’s what it’s like for me to move.  But it is getting better over time.

So back to the crawling.  A few weeks ago, one of my therapists said that we’re going to crawl.  After I stopped laughing, I got onto the floor, into quadruped (hands and knees on the ground), and tried to crawl.  Quadruped is a challenging position, because it doesn’t just work the hip flexors used to move the knees forward, it works the core, the shoulders, the triceps, and the chest.  It also forces me to keep my hips balanced above my legs, which is probably at least moderately necessary for walking.  Probably.  Of course, it does work the hip flexors significantly, and when I first started crawling, a significant amount of effort netted me very short, choppy knee strides, and roughly three feet of movement.

Today, my strides were much longer and I was almost jabbing my knee upward.  I moved roughly twelve to fifteen feet very quickly, and was not completely fatigued when I made it as far as I could go.  The hip flexors are of primary importance to running and walking.  I guess those physical therapists know what they’re doing when they say to get on your knees and crawl like a baby.  So I’ll be more than happy to continue crawling.

When a friend of mine who’s fianceé is expecting asked me how I’m doing with the crawling, I told him “Pretty good, but I think your unborn baby could still beat me.”  Now he wants us to race sometime.  Maybe before I continue on the path to medical school, I’ll stop and race a few babies on the way.  I mean, most incoming medical students will be entering from college or fairly significant research positions.  Me?  Baby racing.

Oh, I’ve been standing too.  Not fully self-sufficiently, mind you, but with my hands using the kitchen counter top for support and the cabinets below to keep my knees from buckling.  A lot of the weight goes through my arms, but every day I try to put more through my legs.  I try to do this from five to six times each day, for roughly a minute each time.  The challenge has been getting my hamstrings to not spasm while the quadriceps straightens out the leg completely.  I’ve upped the amount of stretching that I do daily, and this appears to be helping.  In my most recent kitchen standing events, I’ve been able to get the left leg completely straight and bearing a good amount of weight.  Additionally, I can force the right leg to straighten through some creative weight shifting, which then allows me to put weight on the leg.  I can’t let go of the counter top or I will go toppling forward, but with every day of standing I get closer to standing with a walker and trying to start moving the legs forward.

But for now, I’m content to crawl around (both forward and backward now) and get those hip flexors and extensors strengthened.

I’ve been remiss in keeping the blog updated the past two weeks since arriving at home.  One would think that with a lot less full schedule, I would be able to update it every day.  Not so, it seems.  Getting settled at home has proven to be more of a challenge than I had expected.  Make no mistake, I knew prior to being discharged that it would be hard.  I thought a lot about how I would handle being in the world again, sans call button.  The thought frightened me, and although I knew I was ready to make the transition to home, I didn’t have any idea what it would really be like.

You see, I was never one to hit my call button in the hospital.  After I got good at doing my own popovers (bracing my arms and popping over from one surface to another, e.g. from wheelchair to bed), I didn’t even bother to hit the call button to ask for a hospital aide to help me get ready for bed.  I just did it all myself.  What’s the point of hitting the button and waiting who knows how long for them to show when the whole point of my therapy was to do those things for myself?  By the time I left, I was so independent that the aides would come in randomly at times just to make sure I was okay.  I never hit the call button.  So why was I worried about not having one at home?

There is safety and security in knowing that somebody is a button-press away.  Sure, I’d never needed that button in an emergency.  But I knew it was there, and that made me feel safe.  Now there would be no button.  And to top it all off, the home aide service refused to accept my Medicaid-pending status (which Sinai had been happy to accept for payment the past two months) and thus could only provide services that my insurance would cover.  Which meant I had to go from a full-time hospital support staff to four hours per day, five days a week, of in-home aide service.  And no button.  As much as we tried to fight for more hours, it was not to be so.

The ride home from the hospital was nice.  It was a beautiful Friday early evening, and I made the trip sitting up on a gurney, looking out of the back of the ambulance, surrounded by the milieu of bags full of my hospital-worldly possessions.  I felt as though I’d been shoved in the back of a moving van, squeezed tightly between random books and clothes that needed to be laundered.  Still, with the late afternoon sunlight and the promise of a new life of freedom ahead of me, I felt ecstatic.

As I’d mentioned previously, my prior apartment was far from wheelchair-accessible.  It was a garden-level floor-through in a brownstone in Park Slope.  The flight down from street level was approximately fifteen narrow, steep steps, and the hallway and bathroom were just too tight a squeeze.  On the night I was injured, EMS had to call for support from the fire department to get me out of the hallway and through the tight entrance on the spineboard.  So while in the hospital, I looked for a new place to live with the help of my girlfriend.  She made appointments to see a number of places, none of which turned out to be all that great.  But one day, after viewing one of these uninteresting properties, she saw a sign by a very nice building that said “apartments available.”  She went in on a whim, and they had a single one bedroom available in the building.  By the end of the day, based on what she’d told me about it, I was convinced it would be perfect.

A couple weeks later, the lease was signed and the apartment mine.  Thanks to movers and some very close friends of mine, my old apartment was moved to the new one the weekend before I left the hospital.  As I approached in the ambulance, I had no idea what to expect.  The pictures looked great, but more importantly, I’d just spent four months in the hospital and was now going to a new home which I had no connection to.  I hadn’t done the move-in, I hadn’t been in close contact with the building staff, and this new apartment felt like just another place I was going that wasn’t home. But nonetheless, I was excited.

I got upstairs, and my girlfriend had already done a lot to make the apartment feel like home to me.  She had put a tremendous amount of effort into getting the apartment settled in and laid out in a way that I would like.  That was no small feat, since I was in a particularly bad mood on moving day.  Being detached from the day’s events was particularly hard for me.  I’ve always been such an independent person that I couldn’t imagine all of my personal artifacts being sifted through and handled by people I couldn’t see or supervise.

I try to be a type B person, but once in a while the control freak in me comes out.  And it came out in a bad way on moving day, as I snapped at people who didn’t deserve it.  It wasn’t just being out of control that bothered me so much.  It was the fact that it was a reminder of just where I was.  In the hospital, dealing with a spinal cord injury.  Me, the 6′ 4″ guy who always just grabbed heavy furniture and items when helping people move, now had to depend on others to do the things he used to be proud to be able to do.  Me, the guy who was about to start medical school, now had nothing to learn over the next year, but how to walk again.  Me, the guy who has lived his life independently since a very young age, now had become heavily dependent on other people.  That’s a hard pill to swallow.

I’ve always been bad at asking for help.  It’s not so much that I feel as though asking for help is a sign of weakness, it’s more that I feel bad burdening people with things I should be able to do myself.  I always love helping other people and will go out of my way to do it, but I’ll be on the verge of doing some horrible damage to myself before I ask somebody to help lift the other end of something heavy.  Ask somebody to help me with something big like moving or cleaning? Forget about it!  Until now, that is.  I have to ask all kinds of people for help doing things that I never would have asked for help to do.  And everybody has been so gracious in responding to my requests and not even hinting at the fact that I’m asking them to do anything they don’t want to.  Which I could not be more grateful for.

Having to depend on others has been a big part of the transition home for me.  Probably the single biggest.  I never depended on others, but now I have to.  Coupled with the new obstacles that I face day-to-day, just trying to navigate the neighborhood and put together a comprehensive, long-term therapy plan, and I’ve been pretty out of sorts the past few weeks.  The emotional impact of the transition is wearing on me, and although everybody tells me how shockingly well I’m doing, I certainly don’t feel like I am sometimes.  It’s hard to explain to somebody what it’s like to live with a spinal cord injury, day-in, day-out.  I don’t even know what it means, yet.  The hospital was a bubble, a nice, warm, protective bubble that lets you ignore those things (no matter how well they prepare you for it).  Now I’m outside the bubble, and although I don’t want back into it, it’s made me realize just how nicely the bubble supported me.

This week began with the promise of returning home to my new apartment early in the week.  A firm departure date of Tuesday had been agreed upon by all concerned.  Then Tuesday came, and some complications arose that pushed it to Wednesday.  Tuesday night, I had a mild fever – 38.0°C (about 100.4°F) that was easily quashed by some Tylenol.  Ironically enough, I had just been thinking on Monday how long it had been since the times when I was spiking fevers night after night, or when my recurring fevers kept me from being discharged by Lutheran.  That’ll teach me to focus solely on positive visualization.

Then Wednesday arrived, and a few more paperwork complications looked to push it to Thursday.  Wednesday night, I again presented with a temperature of 38.0°C that was again easily addressed by two Tylenol.  When I awoke this morning, my nurse had me sign my discharge form and I was excited to finally be heading home.  Dr. Stein rounded, and said he thought it would be best if I stay until the fevers had subsided for good.  It’s likely benign, but why risk it just before a long weekend during which it may be difficult to get help?  Hard to argue with the logic, although I’m really getting antsy to get out of here.

So here I sit, waiting.  The past week has just felt as though I’ve been trying to pass the time outside therapy as rapidly as possible, so that I can be home.  It feels almost like those days at the end of the school year in elementary school.  You don’t have finals, and things like Field Day just serve to bring the relief of summer that much more quickly.

I’ve been here quite a while.  Nearly four months since the injury, and three-and-a-half months since arriving at Sinai.   Just as a precaution to eliminate any concern relating to past events, Dr. Stein sent me for some imaging (ultrasound and x-ray) on the right leg again.  It brought me full circle to when I had these same procedures done just after being hospitalized.

I remember the first ultrasound of the legs after the IVC filter implantation, just after the accident.  While waiting on the gurney (I wasn’t transferred from one bed to another at that point, they would just grab my bed and go) in the hallway, the drainage bag from the Foley I was still wearing at that point started to overflow. Having the imaging department call my nurse over because I was effectively peeing all over the hallway was pretty embarassing, to say the least.  During that imaging and a subsequent one at Sinai, I fell asleep for the majority of the procedure.  This time I was wide awake.

I’ve had a number of x-rays done since arriving.  This time, I wondered if I would have a particular tech I’d had twice before: once when I just got here, and again about a month ago before my legs started moving again.  Initially, the techs had to transfer me from the gurney on to the x-ray bed.  It took two people and was very nerve-wracking for me since I had no control over where they moved me.  All I could do was hope they didn’t overshoot and throw me over.  I was fine.  The second time I saw the same tech, I was still wearing a collar but was able to transfer myself from gurney to table.  He commented on how much better and stronger I looked.  Now I easily transfer myself, and I sat watching my toes wiggle and my legs move around.  It’s amazing how far things have come.

Next up, thoughts about how this whole experience has impacted me.

In my last post, I shared my understated excitement at having movement in my big toe.  The post was intentionally succinct, as I wanted to share with you just how speechless I felt when I first saw movement.

Every morning since arriving three months ago, I would try to move my legs and my toes while sitting in the shower.  And every morning, nothing would happen.  Once in a while I would think I saw small movement, but it always turned out to be my mind playing tricks on me.  This time, there was no mistaking the more gross movement.  In a state of shock, I tried again.  It moved again.  Right when I told it to.  I tried about twenty times before I let myself even consider the possibility that it was real.  Then I prayed that this was the beginning of the next stage of my recovery.

I felt exhilarated and scared at the same time.  Scared that my exhilaration would be consumed by the realization that the toe movement was just a spasm I was somehow able to influence.  Several times before, I’d had my hopes dashed by reality.  I would see something change and think it was a sign: spasticity disappeared when I had a fever, feeling became more acute during injections below the injury level, even positive changes to my mood with no direct cause.  But time and time again, nothing big happened.  I kept telling people, “I’m seeing positive changes, staying positive, but nothing major yet.”

This was major.

Unfortunately, it was Monday at the start of a week when Dr. Stein was on vacation.  The attending covering for him was a more than capable physician, but I had wanted to allow some time to ensure the changes were repeatable before discussing them with a doctor.  But I did share my observation with my physical therapist.  Her face attested to her shock and disbelief, but she did promise later that day during our session to check things out.

Her confirmation that the tendon pulling on the big toe was actually moving was the first thing that allowed me to believe that it might be real.  The following Monday when Dr. Stein returned, he also confirmed what I suspected: I was able to control the toe.

That changed everything.  My therapy now focused on the legs and getting additional movement that was just starting to appear.   It also changed the classification of my injury from ASIA B to ASIA C.  This was also major.  The image on the right describes the different levels used to classify SCI, and although my reclassification as ASIA C by Dr. Stein did nothing to change the movement that I’d regained, it further made the changes to my body real.  They were now on paper, not just a supposition of my own, but a medical fact.  I was now making major progress, one toe at a time.

The days after that brought further return.  First I noticed I could swing my leg out just a bit.  Then I could contract the leg medially.  At the start of this past week, my therapists did an eval of what functionality had returned so far.  My left leg was bending at the knee (allowing me to kick), and was even able to resist some basic resistance provided to it.  This garnered a score of 2+ on the ASIA muscle grades (again, see the chart just on the right of this block of text).  I could also bend the toes upward and flex the leg up at the hip.  But only in the left leg, nothing in the right.

Some time had passed since my left toe started moving, but the right still wasn’t waking.  I often watching other patients walking in the gym and it always seemed that one of their legs was dragging.  This, I reasoned, was due to one leg returning sooner and stronger than the other.  Dr. Stein confirmed this to be the case, which temporarily assuaged my concerns that the right leg might not wake.  And while he had previously seen instances where one side would wake up and the other not at all, this was much less often the case.

But still, the right wouldn’t wake.

As recently as the past few days, muscles in the right leg are starting to move.  I can move the big toe just like a could the left at first, the hip adductors are also under my controlled contraction, and I have some ankle plantarflexion as well.  It seems as though the right is waking up in a similar manner as the left, but it’s just a couple weeks behind.

So what does this all mean?  Yes, the legs appear to be slowly waking up.  But make no mistake, they are nowhere near as strong as they were pre-injury.  Many movements I can only do when not fighting gravity or friction, and it can take significant effort to evoke even the slightest movement.  But it is definitely big progress in the right direction.

There is no guarantee as to what functionality my legs will be able to regain.  They may plateau at a certain point, leaving me functionally in a wheelchair.  They may reach a point where I can walk, but not without assistance or for too lengthy a distance.  They may continue to wake up until I am walking as I was pre-injury.  There is no way to know.

But the one thing I do know for sure is that I am going to fight for every muscle that I can get back.  I am going to fight harder than I’ve fought for anything in my life.  I  couldn’t imagine doing anything less.