Tuesday, September 14, 2010

a decade

this past sunday, september 12, hit the ten-year mark of my life in a wheelchair. that means exactly ten years ago, i spent my morning in an icebox of a room squeezed into an mri, which at the time i don't think i even knew what an mri was, while my arms were burning in excruciating pain and i had already lost the feeling and use of my legs. for those of you who don't know, the cause of my lifestyle was not a skiing or car accident, it wasn't a shark attack, i didn't jump into an empty swimming pool, i didn't go train hopping and miss, and i didn't get shot by a murderous burglar. i don't mind being asked about my disability, but these are some of the stories i tell rude strangers. i don't lie because they ask, i lie because of how they ask. the truth is far less interesting and i am actually bored of telling it. i woke up to possibly the worst pain i've ever experienced in my upper back. my face was white and my hands were shaking. i should have been in my first week of high school, but lucky for me, the teacher's strike prevented that.  the pain went away after lying flat on my back, and i led a normal morning until an hour later it came back and this time my legs gave out. my legs bounced a bit and in an instant everything was gone.  i couldn't lift them, i couldn't move them, and i couldn't feel them.  i was stuck with some iv's and rushed to the hospital, naively thinking i'd be home that night, but instead spent the next 2 1/2 months in that hellhole of a hospital experiencing what i'd now consider some of the worst experiences of my life (although surprisingly there were plenty of good times as well). the reason for all this was an avm on my spinal cord, found in the mri, where i was immediately sent into surgery for removal. technically we don't know the cause of the avm (as far as i know) but it was probably there from birth. 

i'm leaving out a ton of details, it was hard enough to write what i did.  it's a whole different experience writing my story than telling it, because i'm forced to think about it and relive it, and i'm having a tough time dealing with that right now.  telling someone a quick version is thoughtless and emotionless for me because of how many times i've done it. it's amazing how many memories i have from those 2 1/2 months, and even crazier how some are clear as day, some hazy, some are completely forgotten, and others i can't even distinguish whether they even happened or not.

i have been trying to keep busy recently to avoid the fact that i've been paralyzed for an entire decade. i get it is just a number, but ten years is a very long time, so long that it even has it's own name. and i find it strange that i've begun and finished several stages and phases of my life in that time.  i really don't care about the actual day of my "anniversary," and i'm usually fine the day of (except this year because i woke up grumpy to a power outage that erased all my alarms!)  basically, i only get depressed once i realize it's september yet again, and that this is my life, and has been for however long (in this case, a decade); that soon enough i will have spent more than half of my life in a wheelchair; and that eventually (for me, although i'm confident almost everyone i know already feels this way) the fact that i could ever walk will be completely forgotten.  being forced to think about it (my own fault) is what hurts, not the day. so for the past week, i've cleaned out my entire bedroom, resulting in 4-5 garbage bags of clothes and junk to get rid of, worked on artwork (as usual) that i'm unfortunately not at all pleased with, and lots of little things in between, while desperately trying not to focus on negative thoughts.

despite the fact that i didn't want to make a big deal out of it, i spent the "big day" sunday at the eastern state penitentiary in philly followed by yummy cheesesteaks with my sister, and later the greatest cheese fries of all time from some crappy bar. mmmm


  1. Hi Kc

    I have spinal avm at T12, avm is 1x3c, on crutches, had radisurgery since nov 2009, doing physio. Life is very challenging!

    Chui HL

  2. Your bravery is inspiring.