Kaizen

It's been over five years since I injured my spinal cord due to injury.  During this time, I've thought differently about my recovery. I can categorize these thoughts into three stages.  The first phase was hoping for a spontaneous recovery. The second phase, I'll refer to as the "quantum leap" phase, because I experienced rapid improvement during a short time. Phase three is my current and longest phase, which I will call the "kaizen" phase.  This also summarizes my entire recovery.

When I first injured my spinal cord, I wished for a spontaneous recovery – hoping I would wake up one morning to find all my body parts working as they did before my injury. Even today, sometimes I will go to sleep and think, "Gee, wouldn't it be nice if I could walk and pee efficiently when I wake up in the morning."  For the first month or two, this was my dominant thought regarding my recovery.

About two months after my injury, I started to experience great leaps of improvement, especially with my legs. It seemed I made major improvements day-to-day, week-to-week. By three months, I was able to stand for a few seconds, and by six months, post-injury, I was walking short distances with only the aid of a quad cane, and at nine months, switched to a single legged cane.  I stopped using a catheter, and bowel eliminations became less dependent on manual stimulation. I thought, "Boy, at this rate, I should be 100% pre-injury by my second anniversary."

As expected, the more I improved, the slower the improvements came. 16 months into in my recovery, I'd reached a point where I was satisfied with the amount I had recovered. It was at this point that I lost my motivation.  I started practicing a passive recovery; I waited for things to improve than doing things to cause improvement. I needed a concept to re-motivate me into action. I found that concept in the Japanese term, "kaizen."

Kaizen, loosely translated, is "improvement through small gradual changes," resulting in a major improvement.  I tested myself to see how well I performed physical tasks and realized that during even the most recent of months, I had been improving – it was just so incremental that I hadn't noticed.   I renewed my efforts to seek out motivational aids, such as songs, videos and readings; I renewed my dedication to physical exercises.

In hindsight, Kaizen applies to the entirety of my recovery. None of my improvements were spontaneous; it took days for me to breathe on my own, weeks for me to move my toes, and months for me to walk using only a cane.  Kaizen also applies to the efforts I made to improve myself. I tried to breathe on my own everyday. I tried to move my toes everyday; I exercised each day and when I reached a threshold, I made the exercises a little bit harder.  Each effort, each little motivational pep talk - all contributed a small amount to my recovery.  However, the sum of all these little improvements are greater than the parts. This is Kaizen. 

Putting a dollar value to #Spinal Cord Injury

A friend and I used to play a game, "What would I do for a $1,000,000."

I was thinking about this, and if someone offered me $1,000,000 to relive the past two years, or never have experienced spinal cord injury, and just have gone one with my life as it was, which would I choose?

Of course, the outcome would have to be where I am now with the recovery, which has been pretty remarkable and (in my opinion) an almost complete recovery.

The answer is, $1,000,000 is not enough.  How about $5,000,000?  No. $10,000,000?  To be honest, maybe.  But that's only because of how much I have recovered.  If I were still using a walker, or even dependent on a quad cane, the answer would be "No."  Truthfully, no money is enough to want me to relive this ordeal.

In reality, I don't get compensated for being sick, in fact, I pay out - for extra medical bills, for health aids that insurance doesn't cover, time lost by going to doctors and labs more often than I used to, adjustments I make to live as normal a life as I can (and here I am fortunate because to see me from the outside, you'd think there was nothing physically wrong with me).  Although I never carried really good comprehensive medical insurance, I carried one that met my needs, and thank goodness for that because at least I have been able to deal with the medical bills.

When I hear stories about people selling their kidneys for $20,000 because they need the money, I am saddened.  If I really needed the money, how much would you have to pay me to go through the last two years?  The sponsor would have to pay the medical bills also, and the money would have to be tax-free, but except that I'm sure the amount I would accept would be less than $1,000,000, it is not something I would want to have to think about.

Money can buy many things, including better access to healthcare, but it cannot buy your health.  And although objectively, we can all say, "Health is more important than money," this is a statement I understand emotionally as well.

I still have to make the best of it. I still need to work hard to maitain what I have recovered and work hard to recover more. I have to motivate myself to keep trying harder. I need to be grateful for the amount of recovery I have experienced, and I need to be as positive as can be.  The reality is that no one is going to give me money just because I got sick and sustained damage to my spinal cord.  But these are all things I'm willing to do without any compensation.

Inspirational Person #10: Jazzmin Peluchette

Jazzmin Peluchette is a teen-ager who is athletic and plays on her high school volleyball team.

In July, she had a sudden onset of pain, and landed in the hospital.  She was blinded and paralzyed and could not breathe on her own.  Eventually, she would be diagnosed with Neuromyelitis Optica Disease, an autoimmune disease that attacks the spinal cord and the optic nerves. 

She has regained some movement and some sight, but is still a long ways away from full recovery.  She has vowed to recover 100%.  Her determination is inspirational.

Here is a link to the local news story: click here for the news story.

The Care Cure Community

I was going to post today on another embarrassing subject - digital stimming.  And those of you who go through it know what that is.

Now, that i have something else to write about today, I won't get into that, except that I had to go through that for about 4 months daily before I got some normalcy back, and after five months, it became 80 -90% normal.  But that 10% of the time when I can't control the function is embarrassingly scary.

Anyway, while doing some research, I found a fantastic set of message boards called the Care Cure Communty. It seems like it is maintained by Rutgers University - and its a set of message boards for Spinal Cord Injury. 

Check it out http://sci.rutgers.edu/

Inspiring Story 1 - Dennis Byrd

When the doctors told me it would be a couple of years before I would walk "normal enough" in about two years, I was really determined to do it within two months - I don't know if my physical therapists felt that I was that determined considering all the trouble I had in the beginning.  But, I really couldn't move below the waist.  Okay, then there was the fraidy cat part of me who doesn't want to fall.

One of the first things that popped into my head, however, was the story of Dennis Byrd.  I might have been watching the game, but if not, I saw it on the highlight reel - but I had remembered the incident all these years.  Byrd was a football player for the New York Jets - he was a defensive tackle, and he broke a vertebrae in a collision with his teammate while rushing the quarterback.

I had thought that he was told that he would never walk again.  So, when I saw the news a year later that he "walked" out into the field, I thought, "Wow." 

So, twenty years later, I am being told it would take two years for me to walk again.  And my mind was if someone who wasn't supposed to walk again started walking, then there would be no reason for me to worry, or feel sorry for myself. But I wanted to do it sooner than two years.  I really wanted to walk afgain within two months.

A couple of weeks later, a friend asked me if there was any book I would like to read. Yes, I said, "the Dennis Bryd Story," but I got the title wrong.  Anyway, on his next visit to the hospital, he brought me the book, and I devoured it - read it in two days. The book is titled, "Rise and Walk - The tRial and Triumph of Dennis Byrd."

I did find out from reading the book, Byrd had an "incomplete" injury, which means that the spinal cord was not completely destroyed.  So, physically, it was possible for him to walk again, but just because something is possible, doesn't mean it's probable.  That's where the inspiration comes in.  Bryd very easily could still be in a wheelchair now, but his determination, and the support he received around him enabled him to accomplish his goal of walking again. 

Apparently, his story was made into a tv movie, which I never saw, but would hope to see someday.  As for the book,  I highly reccommend it - especially anyone who is recovering from spinal cord injury.