Skin Prison (A Disability Post)

Skin Prison

A brief retelling of my history.  I broke my neck in 1982.  Five days before I turned 19.  The result was quadriplegia.. paralysis in 4 limbs.  Although the only effect in my left arm is the tiniest decrease in sensation, there is no such thing as a triplegia, so a quad I am.  As far as this story goes, that’s not a big deal.  I’ve gone so far as to tell people the accident and resulting disability are a GOOD thing, because the way I lived my life back then I surely would have ended up dead sooner or later by pushing the edge… the accident slowed me down.   As it turns out now, that’s probably not true.  Driving like a maniac, jumping off cliffs and diving into shallow pools with trees floating in them is nothing compared to the shit people do today.  Extreme sports, jumping out of helicopters and flying next to cliffs in a suit designed to make you soar like a flying squirrel makes me look like a massive pussy!  I wish I had the opportunity to do that stuff!

Describing what life has been like over the last thirty years is a rather overwhelming task and I’m struggling to find a way to break it up into manageable pieces.  Please excuse the missteps I’m bound to make in the process.

Today my purpose is to explain how my world has shrunken down to a bed in a small room in a small house on a small street in Schenectady.  “Skin Prison” refers to the body in which I reside.  The vehicle I have improperly maintained over the years.

So for the purpose of explanation I’ll need to cover the Indiana procedure, the surgery during which a portion of my large and small intestines, as well as my useless appendix were formed into a bladder, which they used to replace the one that had been ruined by infections from 1982 to 1995.  The ureters (tubes that run from the kidneys to the bladder) and small portions of my former bladder were attached to the new bladder, and the appendix now served as a stoma (look it up if you must) through which I catheterize to drain the bladder of urine.  It seemed a small miracle at the time that I retained sensation enough to know when this new bladder was filling and needed to be emptied.  Because this bladder was designed in such a way as to not leak, unless it was very full, having this sensation ensured that I would not leak urine all over the place.

Autonomic dysreflexia (AD) is a term that describes how a paralyzed body reacts when the natural homeostasis (balance) of the body is thrown off.  For me it was sweating and shivering.  When sweating and shivering occurred it signaled that something was off.  The most likely candidates are always bowel and bladder.  So when you get these symptoms you shit and piss and they will go away.  If they don’t go away you have to look for something else that is somehow off.  Perhaps a bladder infection or the occasional broken leg.  For almost 20 years I thought that because I couldn’t directly feel pain I wouldn’t benefit from taking pain killers.  So I refused pain medication, even when recommended for surgeries where a toe was being cut off and the skin used to patch up a hole in the side of my foot.  Some time around 2000 when I was going out to dinner with Susan (my girlfriend at the time),  I was attempting to get up into a Jeep so we could go out to a nice fancy dinner.  I missed the transfer in by just a bit and told her to push so I could get up the rest of the way.  She pushed.  We heard the snap but I was in.  She enjoyed a nice fancy dinner while I sat uncomfortably sweating and shivering.  Following dinner it was off to the emergency room to get an xray that confirmed my femur was broken.  While I was explaining to the ER doc how I didn’t need a prescription for pain pills because I couldn’t feel pain he interrupted me and called me an idiot.  He gave me 2 pills and said he’d be back in about 30 minutes.  When he returned he had a great laugh as I agreed that indeed I was an idiot, as I reflected on all the times my AD could have been relieved but wasn’t.  Needless suffering is a hoot.

Muscle spams are frequently a horrible problem for persons with a spinal cord injury.  I was very fortunate in that my muscle spasms were infrequent and  minimal.  Many people have to take pretty heavy doses of meds to keep their muscles flexible yet the only time I used such meds was to try and help me get to sleep.  Insomnia has been a steady companion since the accident in 82.  Cripples often compare injuries and functions and are thankful for the areas where their own injury leaves them more functional than the other poor slob.  So a para will look at a quad and say “poor bastard, he has no stomach muscles and therefore no balance.. he’ll never play wheelchair basketball.”  On the other hand a quad might look at a para and say ” holy crap his injury is lower and affects his joint, that poor bastard has no dick, he’ll never get laid.”  Such are the politics of paralysis… there’s always someone worse off than you; be thankful.

So after maybe 25 years of being in a wheelchair, and using my shoulders as weight bearing “feet” to push myself along, the damage begins to take it’s toll.  A long forgotten (1979) broken right collarbone altered the way my shoulder sat within it’s socket.  I developed bone spurs in my right shoulder that were causing me horrific pain every time I attempted to push my wheelchair.  I underwent surgery (in Arizona) to correct this issue in maybe 2004.  This surgery was not very successful and I ended up going on disability.  Combined with several other factors like divorce, bankruptcy and the death blow to living in Arizona – heat stroke; I ended up moving back to New York and had a second shoulder surgery done by Richard D’Ascoli that was wonderfully successful.

I began working at Sunnyview and believe it or not I’m going to skip over the beginning of my chronic pain issue in my side (7th rib area) that will lead to a whole slew of operations, deaths, changes in life circumstances and all around decrease in quality of life issues that came with it.  I end up on disability again with chronic pain in my side which keeps me from working and to one degree or another from doing too much of anything that requires me being up in the wheelchair for long periods of time.

At this point I’m in a position where I have to plan my “up time.”  Choosing to go away for a weekend or do an all day event like the yearly Michael Canty Fun Run charity events come with consequences.  I know that doing these things means I will experience an immense amount of pain while I engage in the activity and it’ll hurt and severely limit what I’m able to do for maybe the next 5 days.  I have pain medication that I can take to help take the edge off but it’s never quite adequate.  So I’ll still travel to Boston to hook up with the band to see a Yellowjackets concert and have an awesome time; but I’m going to pay for it and I’m going to have to do my best to shield the others from knowing too much about what’s going on with me because I don’t want to spoil the other’s time or have anyone worrying or fussing… because that is the WORST.  When I evaluate whether I’m able to participate in one of these events I’m forced to look at whether I’ll be able to have breaks or recovery periods where I can lay down and rest or stretch out.  Other concerns that I take on are managing others expectations about what I am and am not able to do, balanced against letting them and myself down.  Since what I’m able to do is limited, I very much like to grab the opportunities that arise when they happen to attend these get-togethers.  Everyone has busy lives and the ability to get together is fairly rare.  Writing this out is an admission that I’m no longer able to protect others from what is going on with me as well as an apology for doing so for so long.  I realize I was selling everyone short on their ability to “deal” and that protection was perhaps never needed.  In any case, at this point I need support.

So on to the next downward slide.  Closing in on current events, the infection in my spine that led to several surgeries and a six month stay in the hospital while my wound closed was significant for many reasons.  Decisions were made based upon my body and how I have proven over time to be an “infection risk.”  Part of the medical history that I have skipped over included the implanting (and subsequent removal of) a device that was to use electrical impulses to help manage my pain.  Aside from a long history of bladder or urinary tract infections (UTI) I am now considered an infection risk whenever any sort of surgery is under consideration.  Additionally I don’t just get infections; I get the infections that are resistant to medications that are currently out there.  So if I end up needing surgery the infection factor gets added into the risk/benefit consideration of moving forward with the surgery.  The same way you might consider quality of life in a discussion.  An intervention might take years off of a life, but the quality of the life lived will be better.  Certainly this is always a consideration as I face these decisions, but now I have to consider that a surgery may fail because of an infection.  Indeed a surgery may lead to an untreatable infection that could end up spreading and take me out once and for all.

The infection in my spine nearly killed me.  I’m not kidding when I say that my nurse friend Jen has saved my life several times.  Many of those instances have been skipped in this article but if Jen hadn’t visited me at Linda’s request that day and called 911 I would have been dead within a few hours.  That’s what was said at the time.  Ellis couldn’t handle me, so they stabilized me and sent me off to Albany med.  I had bone in my spine removed and replaced by “donor bone.”  If you plan on commenting below about having a dead person’s donor bone in me trust me I’ve heard all the jokes; but go ahead and get it out of your systems.  I received heavy duty antibiotics and was sent on my way.  A month later my life was saved again when Linda and Jen teamed up after noticing swelling like a softball on my back where the infection had once more invaded the bone in my spine.  This time several vertebrae were removed and the fear of infection led them to let the wound close on it’s own, resulting in the six month stay at Albany Med.  When I was discharged they had not done an intervention to replace the vertebrae in my spine.  I was going home with a stalactite and a stalagmite in my back with follow up to be determined upon whether I might be able to remain infection free and whether the pain I experienced with my back this way was tolerable.  The pain was not tolerable and I was able to remain infection free.  The decision of whether to have surgery at 6 months was delayed another six months because of concerns that putting metal in me would fail due to infection the way it had now at least twice in the past… and this time the result might even be worse.

So in January 2013 in I went and the surgery in terms of putting humpty back together again was a success.  I have a metal spine where no spine was for a year.  However….

The posture change from slumped to straight has meant several life altering changes.  Transfers into and out of anything are far more difficult and put new stresses and strains on everything I do.  Several people were hopeful that the changes from the surgery would improve the chronic side pain I now feel like I’ve had forever, though that was never part of the equation.    The surgery was to get me back to my crappy baseline, before any of the infection stuff in my spine happened.  The pain remains.  The needing to plan out my up time remains.  And now there are new and different problems that I’m just beginning to understand and to which I’ll need to adjust.

During the year before the rods were put into my spine, the stalactite and mite were carving up my insides, causing me new and different spinal cord injuries.  So I am in many ways now both a para and a quad.  Instead of sweating and shivering with AD, I now sweat in my lower body.  I can drench a set of sheets.  Ball sweat?  Not nice and I’m not going to get into that one all that much.  The full bladder signals I used to get are no more.  I can leak urine if the bladder gets full.  So i need to empty my bladder all the time to avoid leakage.  Drinking alcohol heavily is a bad idea with this set of circumstances, as some of you can imagine (or attest).  I also have very strong leg spasms that I’ve never had before.  These get better or worse for reasons I don’t yet fully comprehend, but they can be a major pain in the ass when I’m trying to do a transfer and the legs just won’t lighten up.  I’ve wished them cut off more than a few times recently, though the infection risk in that would finish me off for sure.

Getting to the final stretch, this past thanksgiving my shoulder had been bothering me for awhile.  I attributed it to weather and arthritis and it’s just one of those things (like sore hands from arthritis) that I just deal with and don’t think about or even mention at a doctor’s appointment because they are so small in comparison to everything else and they tend to come and go.  Old age I believe it’s often called.   The combination of too tight legs and too weak a shoulder and a too straight posture and a too fat stomach caused a “miss” on a transfer into the shower seat.  Pushing to force it, deciding it can’t be done and pushing to get back in the chair and failing, along with the subsequent slow lowering to the ground caused a shoulder injury.  Torn cartilage is the most likely suspect, which I re-injured over the Christmas holiday.

Doing any transfer and even pushing the wheelchair kills at this point.  I’m to start physical therapy one of these days when the visiting nurses are able to set it up.  It even hurts to adjust myself and my position in bed.  This has led to a pressure wound on my side that was just discovered two days ago.  So now I’m dealing with further positioning problems, as I’m no longer able to stay in the one comfortable position I have been able to find for my shoulder and side pain.  On the positive side, it doesn’t often hurt to breathe.

The wound and the shoulder will heal, but there is a new baseline that is more limiting then it has been in the past.  My spirit remains free and soaring while my physical presence is firmly rooted in two uncomfortable positions, here in my skin prison.


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