Here’s Part III of my story/history with colitis (you can look at the prior two entries to get the full story):
I am always looking for explanations for why this illness has come into my life and why it continues to poke its ugly head in time and time again. I think it started with the doctors telling me that stress was causing the symptoms (even today doctors don’t know the exact cause of colitis). I started blaming myself for getting sick, for not taking better care of myself. I asked them if diet had anything to do with my illness and they said it did not so I continued to eat as I had been eating, continued to consume candy and the occasional coffee. During future flare-ups, I determined on my own that the best solution was to just drink Ensure (a sort of supplement drink) so that no fiber was passing through my colon (give my colon a vacation if you will). It was not an effective diet (I definitely do not recommend it) and I fainted on multiple occasions, most likely due to low blood sugar. On one occasion, I was at a friend’s art show. I recall looking up at my friend desperately as I slipped into unconsciousness. He somewhat caught me (like out of a movie, I try to tell myself, though much less romantic and way less graceful) and I convulsed on the ground. Another time, in Japan, I was getting out of the tub and came-to half in/half out of the tub, face planted on the floor of the bathroom. I remember tearfully looking up the words, in Japanese, for “I fainted so I can’t come to work this morning” in my electronic dictionary. Around that time, I did learn the word for diarrhea (geri) and discovered I just had to say that word over the phone and the town office would ask no more questions and encourage me to stay home (I must say it was not always a case of geri, but heck, I might as well get something out of this illness).
Doctors always said I was an anomaly (well the word they would use was “unique case” but I’d much rather be an anomaly). Every time I would go to my doctor, he would threaten surgery (well that’s what it felt like at least, or rather he was strongly recommending the removal of my colon because he didn’t know what else to do with me). He had me on such high doses of Prednisone that I didn’t even bother with avoiding food with salt; the side effects were inevitable. I had the moon face (which sounds so much cuter than it looks; I was hardly recognizable); the horrible acne (I’d rarely had a pimple through my entire adolescence and now I couldn’t smile without my face pussing. I still have scars to this day from the acne); my legs were so skinny I could hardly walk up stairs, yet my shoulders were swollen and larger than usual causing painfully purple stretch marks all along my lower back (some perve once asked me if I was into S&M thinking the scars on my low back were whip marks); I stopped growing hair on my legs but sprouted hair on my shoulders like a man and the hair on my head was starting to fall out (I eventually documented myself shaving it and created a large serigraph wall hanging titled “Finnegin Beginagin began again and so will I”).
I turned to art to help me with the most difficult times, which is a huge reason why I am now an art therapist. Over the course of my sophomore, junior and senior year of college, I spent numerous hours folding origami cranes to hang in beautifully elaborate and beaded chains. You see, there is this Japanese legend that if you fold 1000 cranes, any wish you have will come true (later I would go on to write a 150 page thesis for my masters program on “The Experience of Folding 1000 Cranes Among a Group for a Loved One Who is Ill or Dying.”). I probably folded the most cranes the first semester of my junior year of college. I had planned to go to Italy for the year to study painting in the land of the masters but my body had another plan for me. I ended up so ill that I could hardly leave my house and was forced to not only forego Italy, but also to stay home from school for an entire semester. During that time I took an alternative photo processing class and a ceramics class at the local community college. Thankfully the classes were in the evening, which made them easier for me to attend (mornings, around this time, were exceptionally difficult on my colon). I created a series of cyanotypes and gum bichromates (photo processes) of parts of my body covered in origami cranes. I hung cranes from constructions I built to display some of my photos in (I remember my dad helping me install tiny hooks under a shelf over my windows to hang more of my crane creations from). When my mom asked me what I wanted for Christmas that year, I was so down I couldn’t think of anything I wanted except for more beads and origami paper. At that time I didn’t even want my friends to see me; I had painted over my mirror because I had such a hard time even looking at myself.
I focused on my art and in particular on two main themes (besides the 1000 origami cranes)–that of “starting over” or “beginning again” and that of “spinning.” As I mentioned earlier I eventually shaved my head and incorporated photos of the experience in a piece about “beginning again.” If you have never heard the song before it goes:
“There was an old man named Michael Finnegan,
He grew whiskers on his chinnegan,
Shaved them off and they grew in ag’in,
Poor old Michael Finnegan (begin ag’in)” (and then the song repeats over and over again).
It’s a bit of a sad song as ‘ol Finnegan is stuck in this vicious cycle of constantly shaving off his whiskers as they will only continue to grow back, kind of like colitis. I can fight my best fight but this is a chronic illness. To be honest, I never looked at the interpretation this way until writing this just now. I saw it more as, “I’m super sick and I need to get well so body let’s do this and start a fresh. If I just start over, change things around a bit, I can beat this illness.” I guess that’s the best mentality I can have. I can either wallow in self pity and be sick as a dog (that saying “sick as a dog”, by the way, makes no sense at all) or take as much control as possible and do what I can to take care of myself and get well.