Disability Awareness Day - (Belated) - RSD2

This is for rydi1689's Disability Awareness Journal  and Nichrysalis's Glossary project.


I stand in the corner of the rink photographing every game for ten different professional teams and several United States national teams, with only one real working arm, and yet to all others I appear to use both. Few notice that I frequently wrap the strap of the camera snugly around either arm to keep the camera in place and to try to avoid as much blur as possible.  Sometimes I lean heavily against the glass, risking the lens, but needing the extra support.    Sometimes those who do know about the arm assume that it no longer hurts or troubles me, unaware that the pain is unrelenting and that it takes constant concentrated effort on my part to get it to function at all.  My husband can testify to the number of things I drop on a regular basis, to the number of times the arm is a great bloody mess because I was unaware I had cut it open, to the days it gets left behind and jammed in a door because it is completely out of sync with the rest of the body to which it remains attached like a jerk of a parasite.  If you've never tried professional sports photography with one hand and no tripod or monopod, give it go. I guarantee you'll realize that every moment I capture is a victory for me...and sometimes when I'm dancing about in my corner and you wonder what the hell I'm so damn happy about...you'll now know that it's because I beat my own odds once more.

In 2008 I was diagnosed with Reflex Sympathetic Dystrophy - Type 2 (permanent major nerve damage) and later a rare variety of synesthesia that developed as a result.  For me, it began in the left arm and then spread into the entire upper left quadrant of my body and down into the lower right.

RSD2 (now also known as CRPS-2) is a chronic systemic disease of the central nervous system and autonomic nervous system that involves severe pain and physical changes to the affected region (neurogenic inflammation/swelling, temperature, atrophy, vasomotor dysfuction, etc.) following major nerve trauma.    It initially affects a limb and in almost all cases spreads. For a very unlucky third of patients, it will eventually cover the body.  Treatment is complex and often unsuccessful. RSD2 is known as a "point of no return" disease. Once the disease has spread into a new network of nerves long enough it is there permanently, thus, early therapeutic intervention is absolutely essential to maintaining control.   On the McGill Pain Scale, RSD2 ranks above almost all other pain experiences, greatly exceeding that of unassisted childbirth, amputation without anesthesia, chronic back pain, phantom limb pain, bone fractures, and even cancer.   As a result, RSD2 patients are at severe risk of drug and alcohol abuse, depression and suicide. 

When I first developed this disease I was in complete sensory shock.  Take the worst physical pain you've ever experienced, multiply it until it reaches about 45 out of 50 on the McGill scale (like I said, exceeding pretty much everything else we know) and then keep it there.  If you can get over the complete initial mind fuck (because before YOU feel pain your brain has to interpret it), you may have a chance of functioning...somewhat.  Go ahead and pop an aspirin. Take a pain pill. Meditate. It won't remove that sensation. It's there when you go to sleep (once you relearn how to sleep through it) and when you wake up. When you drive to work. When you eat your breakfast. When you do your laundry. When you manage your job. When you go on vacation. It doesn't care what you're doing. It's going to be your ever constant companion for the rest of your life.

Now take that pain and add some extra sensations that will also never go away.  My left arm (and all other places it has since spread to) at this exact moment burns, feels frozen, feels like things are crawling on it, feels itchy, feels wet, feels broken, feels cut, feels bleeding, feels like a cactus is poking it all over, etc.  It is under a constant sensory barrage.  Most of those sensations are false or far out of proportion, and in my brain it reads as a constant noise.  As a result of this constant noise, this constant flood of information from the affected areas, most of which isn't even "true", I have a very difficult time interpreting sensory information.  Here are a few examples of how this affects me on a daily basis:

• Once while working at my computer my arm told me it was cut open badly and bleeding.  It kept saying (yes, I anthropomorphized my disease, shut up, it's how I cope): "wet. cut. hurt. wet. wet. wet."   I ignored this sensation.  I ignored it because it always says that.  A few minutes later I decided to look at it just to see if it was so (if I always looked at it every time it sent a distress signal I would never ever be able to look anywhere else, as I said, this is a constant signal) and this time, to my surprise, it was sitting in a disturbingly large pool of its own blood.  I have no idea when or how I cut it that badly.  And here's the catch.  It's not that I didn't feel the initial injury. I did. I just couldn't separate it from all of the other pain signals.   Because I am in constant pain regardless, it is very difficult for me to distinguish between new threats and false signals.  It would be very easy for me to break a bone, suffer from appendicitis, or some other disease or injury and go months without seeking help. Not because I don't notice it, but because I have no idea if it's just the disease again or something else.
• This is where the synesthesia comes in (which is when your brain crosses different senses together. For example, some people can taste a colour, or smell a sound).  About nine months into the disease I began to notice a very strange phenomenon...I could hear the pain. More accurately, I interpreted pain signals as corresponding sounds.  I mostly hear it as an electric static, buzz, hum, ping and most frequently as various brass instruments.  When a nerve fires I can very often HEAR IT.  When a whole bunch are going all at once during a flare it sounds, actually sounds, like an orchestra warming up.  The first time I received a nerve block to my upper left quadrant the doctors reported me as saying immediately: "It's so quiet!"   As a result, not only do I experience constant pain, I experience constant sound.  This actually makes it difficult for me to pay attention to and listen to a conversation, watch a film, enjoy music, or fall asleep.  This is why I prefer to "chat" or "text" people. If you call me, or talk to me on skype I pretty much can't hear you.
  
• I drop everything.  Because of the constant sensory feedback, I have almost no grip.  A huge part of this is the disease itself causing atrophy to the muscles and tendons that allow me to manipulate objects in my left hand or walk on my right foot.    The other part is that because of the sensory overload, I can't distinguish what I'm holding in my hand. 
  
• My affected limbs are not in sync with me.  We have a very hard time communicating with each other and as a result it often doesn't swing in rhythm when I walk, frequently gets caught in doors, banged on counters, tables, walls, you name it because I have a difficult time assessing where it is and what it is doing while attached to me.   I have to make a concentrated effort to manipulate objects, or make complex actions such as opening jars, putting my hair into a pony tail, cooking dinner, eating dinner, etc.
• PTSD.  Post traumatic stress disorder and anxiety are tied to this disease for me.  I have a very hard time allowing people to touch me or going to a hospital, doctors office, or closed room where I feel like I'm going to be prodded.
  
• Flares. Flares are my nightmare.   This is where the vasomotor dysfunction comes in.  When the region goes into a flare mode it sends signals to my brain that inform it that a catastrophic injury has occurred, the brain responds to the situation by cutting off blood supply to the affected region.  In the left arm this means it undergoes a rapid transformation.  It locks up, swells, then goes cold.  It cannot move, cannot be communicated with.  Because this happens frequently, the reduced bloodflow has made the bones brittle and at least one of my wrist bones has already "died."  When it takes up my entire upper left quadrant, including the occipital and transgeminal nerves on the left side of my face, that whole side locks up. It's as though I've suffered a stroke.
  

As depressing as it sounds, the reality is that I manage it very well with very aggressive physical therapy.  I credit that first year of torture (and physical therapy IS torture if you've ever undergone it, you know) with why I'm still able to do things like put my hair into a ponytail.



I am on no pain medications and haven't been for five years.  That was my choice and believe me, when flares show up they try to change my mind about that choice, but I've seen what it does to some people and I refuse to go down that road. It doesn't mean that I'm all better now, or that it's gone away, or that I don't feel anything. Hell no.  I feel it. I feel it all the damn time.  But I function. It means that I've had to learn to handle pain that tops the McGill chart, but the brain is a remarkable tool and while I wouldn't recommend it for everyone with the disease, I've found that mastering my perception of pain is as possible for me as it is for the Olympic and professional athletes I work with.

Those who get to know me personally will eventually hear my teary-eyed and sincere expression that hockey saved me.  In late 2010, the depression of dealing with chronic pain was overwhelming. It only compounded life issues, making them seem more difficult to manage than they might otherwise have felt.  Years went by without laughter or smiles and by this point, suicidal thoughts were a constant shadow.  Not because I wanted to die. No, I wanted to live. I just didn't think I could manage it. And then on Friday, November 19, 2010 I went to a professional hockey game.  My first ever.  I sat in section 115, on the 20th row, in seat 17.   The next day I bought another ticket and then another and another until the front office said please just become a season ticket holder already. For two months, I tried to think of what I could do that would enable me to work in the industry.  Then in early 2011 a player stepped foot on the ice and sat down next to me in the penalty box.  He ignored the other photographers, looked at my camera, stared right into my soul and woke me up. In that instant, I knew my role in hockey. The very next night instead of smiling at me from the penalty box where I had sat as a season ticket holder, he swung by and tapped the glass where I was standing, with press accreditation for the first time in my life.  At the end of the game, he pulled off his jersey and handed it to me. It is my most prized possession.  It is my souvenir of the day I became professional, the day I decided I would no longer permit myself to wallow in agony and actually did something about it.   I had never ever photographed hockey before that night, but three years later I am still accredited and still photographing that team and now nine others.  Sports photography pulled me out of my pity party.  And it is apt in ways I could never have foreseen.  Professional athletes, who know pain more intimately than most people, didn't ignore my pain, didn't minimize it or call me a liar, they recognized it immediately, understood it and they taught me how to manage it.  Team doctors, massage therapists, physical therapists, sports psychologists, .....experts in pain, also appeared in my life to help me overcome pain they knew, understood and respected.   They didn't throw pills at me, or surgery, or tell me to just suck it up or ignore it.  They taught me how to.  And I would never have found them, and myself, if I hadn't sat in section 115, row 20, seat 17 or later had a hockey player in the penalty box stare me down with a half smile that said, "why the hell aren't you in the press corner with that camera where you belong?" only to laugh the next night when that was exactly where he found me, and where I've been found ever since.