As much as my mind rallies against the very idea and denies the simple truth - I am, will likely always be - disabled.
I see the handicapped and disabled and never even consider that I am one of their ilk. "That isn't me", I think to myself; but in the harsh light of reality - it is. How and why I came to be this way are told here...I am "the gimp" and this is my story.
They Never Worked Anyway
From nearly as early on as I could remember, my kneecap "moved". I would impress all the other girls in my dance class by showing them how I could push my kneecap around in its socket, and how it would seemingly "jump" to the right when I would bend and straighten my leg out. Both legs did it, but the right was much more pronounced - I could nearly wiggle it all around in its socket.
I don't remember exactly when my right knee began to dislocate - or "pop out", as I called it - I just remember different times that it happened: racing against my little sister in the backyard of our first home, running towards school as the bell rang to end recess, dashing towards the grown-ups at a family get together to tell them my cousin had fallen off the swing and hurt herself.
"My knee popped," I would explain to those that pondered why I'd suddenly - without warning in mid-run or mid-walk - fall to the ground in agonizing pain. It hurt, and it hurt worse every single time it happened. I likened it to taking your leg and bending it back towards your head until your bones snapped.
As I grew into my tween years and the popping became more painful, my mother brought me to an orthopedist. The first doctor we saw made the astute assumption that I was experiencing "growing pains"; my legs hurt and my right knee dislocated because I was having growing pains. Needless to say, we sought a second opinion.
If the first opinion was a bit too lax, the next was completely over-the-top. The second doctor insisted I needed "immediate" surgery to correct my problem and stabilize my kneecap - surgery that could, very well, deform me for life if the surgeons accidentally hit my growth plate. I was only twelve at the time and still growing - I was told that hitting the growth plate was a very real possibility. Needless to say, once again, we sought out another opinion.
We then met my wonderful orthopedist who explained my condition - I had, essentially, a floating kneecap; I was born without enough muscle on the left side to hold the kneecap in place - so it jumped over to the right side, sometimes too much and popped right out of socket. He explained I had a long road ahead of me and surgery was in my future. I was able to stop the dislocation, though, by limiting my activities and doing exercises every morning and evening. This worked wonderfully and though I still had pains and the occasional dislocation, I was able to live a fairly normal life.
I say fairly because I was cut off from activites that most my age were able to participate in - and though I didn't mind the permament excuse from gym class, I was also barred from sports and the simple joy of running and jumping. I learned very early on that nothing should be taken for granted - not even the very basics like walking, running, and jumping.
This became my life - limited, sometimes painful, but liveable. I accepted it and did my best to live life to the fullest while I could. I knew, deep down, that even this limited mobility would be something I would someday miss.
The Nightmare I Can't Wake Up From
In July 2001, I met the man of my dreams and in September 2001, we began a whirlwind romance that left me breathless, exhilerated, and, unfortunately, nearly incapacitated.
I had long since abandoned the exercises of my teen years, and my right knee had grown progressively worse in early adulthood. The extra strain of Baret and I's first year together was the straw that broke the camel's back. Our year of fun, travel, and excitement had been too much for my already-weakening knee to bear. The time I had been dreading since I was young was nigh - I was to undergo surgery on my right knee.
At first, I was excited. The doctor promised me I would be able to gain mobility I had never had - that I would be able to get around and do things like everyone else. I was elated; I made a list of all the things I'd never allowed myself to hope I might be able to do.
What the doctor did not tell me was that recovery would be painful and difficult. He told me I'd be on my feet in three weeks, and that I didn't need physical therapy unless I "wanted" it. It was an outpatient surgery, after all - and I had no idea of what I was truly facing.
To his credit, most people do recover from this surgery in a number of weeks and with little aid. However, he failed to take into account a number of things: 1) I was, according to him, the second worst case he'd ever seen, 2) I scar badly and thickly (evident from the self-injury scars on my arms), and 3) Because of years of dislocations, I had more scar tissue and damage than the average person. I was told that most people get the surgery after 2-3 dislocations; I'd had dozens.
Considering the procedures, it still amazes me that it was an outpatient operation. I no longer remember the official names of the two main surgeries that were performed, but can tell you that one of the four main muscles in my thigh was severed and that a muscle from my lower leg was pulled up and over the kneecap (to stop the dislocating) and sewn into the bone to hold it in place. They also performed a basic arthroscope to clean out any messy cartilege (of which I had a lot).
Three weeks became...the rest of my life. Miscommunication played a large part in this whole thing. I was heavily drugged and not in my right state of mind, but I remember going to the doctor shortly after surgery and him telling me not to attempt movement; to let everything heal. Three weeks later, he exclaimed, "You should be moving it, and able to bend!" Uh?
At that point I asked him about physical therapy, to which he responded, "Oh, I can sign you up for it if you think you need it."
I was not healing and I was not getting my mobility back. I was depressed, drugged, and confused. Physical therapy was agonizing and didn't appear to be working - there was the feeling of something "stopping" me from getting the mobility I was trying to achieve.
A month after my first surgery (August 2002, my surgery was in July 2002), the doctor scheduled me for a "manipulation" to help me move along in getting my mobility back. I would be put to sleep and the leg would be bent and straightened for me, breaking up building scar tissue, and (supposedly) allowing me to work the rest out much easier in p.t.
I was in agony when I came to. However, the manipulation seemed to help nothing and the very next month, I was put under again and yet another manipulation was performed.
At this point, I had been under anesthesia three times in as many months. I could no longer read, as I could not comprehend past a couple of sentences. It took a good year before my head was clear again and I felt back to myself as far as my mental capabilities and intellect were concerned.
As that year mark approached, I was also facing a melancholy and despair I had not battled since my teen years. I felt a prisoner in my own broken body; my "frozen" leg - which now did not bend or straighten past a very small point and remained slightly and permanently bent - was a horrifying, uncomfortable situation to acclimate to.
I remember the next couple of years as feeling trapped inside my head, peering out through my eyes but not really a part of anything that they were seeing. No matter where I was, I was not really there. I could not interact with people or get around as I once had; when I arrived at a get-together I found a place to sit and that was it. Getting up and trying to mingle while on my crutches was never worth the effort or pain. I was watching life go by from inside my mangled form, acutely aware of my disability and suffering a depression that hung heavy with the realization that this was the rest of my life. I was broken...and I would remain that way. All of my hopes and dreams of someday being mobile and "like everyone else" were shattered; the broken pieces glittered in my head as many shards of a cracked mirror - taunting me with memories, hopes, and dreams now unattainable.
The depression was near unbearable; I often wonder how I made it through the next few years. I barely remember a lot of it; I see it as a blur - a horrible, dark smear on my life that is too painful to try and wipe clean. I don't want to remember it, in all honesty. Nothing good can come from those remnants of despair, frustration, pain, anguish, and fear.
In 2004, a bit more accepting of my fate, I - at the urgings of friends and family - went again to see an orthopedist. I'd all but given up on doctors and their false promises and careless and indifferent counsel. This new doctor gave me newfound hope, and I - once again - embarked on the long, ardous and painful road of surgery.
This surgery was to "clean out" the scar tissue and other things that were blocking my mobility and healing. I was hospitalized for three days afterwards, and went home with 20 staples in my leg and a cut over 6" long over my knee. I spent my time - hours and hours - in a machine that, mechanically, bent and straightened my leg. At night, I slept in a Dynasplint - a huge, metal leg brace that put a certain number of pounds of pressure as I slept (or tried to) to aide in straightening.
It was difficult, but I was in good spirits and worked hard to gain my mobility back. Everything was doing fine until that winter, when everything seemed to freeze right back up and the painful arthritis I'd developed left me unable to work my leg as I had.
Where I Am Today
I am no longer on crutches (was for over two years), and now use a cane only when a good bit of walking is required. I can walk, though painfully and with a decided limp. Standing or walking for any amount of time is difficult, if not impossible.
When the weather changes, my arthritis gives me hell - and if I overdo it I can get myself laid up for a couple of weeks.
I am limited in many ways and, I have come to admit, disabled. Still, I do not let it stop me or slow me down - I push hard every day to live as normal a life as possible. I try to look on the positive side of things - for example, rock star parking for life (I have a permanent handicap parking tag)!
If anything, my struggles have taught me not to take anything for granted; even the breath you breathe into your lungs every second is a blessing, as is the seemingly simple act of walking downstairs for a midnight snack. We often don't realize the importance of such things until they are taken from us - nor do we reflect on how blessed we are to be able to perform such natural tasks. Despite any setbacks, heartaches, or pain - live every day like it is your last, and appreciate every moment - it is the only way to truly live.
Go within every day and find the inner strength so that the world will not blow your candle out.
- Katherine Dunham