It has been a nasty couple of weeks for me. If I had to pinpoint when things started to go downhill, I’d say it began with my genetic metabolic appointment.
I’ve seen an x-ray of my heart once before. One time I went to the ER because I was having trouble breathing and they did a chest x-ray to check up on things. Turns out everything was fine, but before I left with my parents I caught a glimpse of something I’d never seen in its entirety before, my heart.
Truthfully, it scared me. I’ve studied anatomy and I know what a heart is supposed to look like. If you make a loose fist, that is generally the size of your heart. However, my x-ray looked like a boot was lodged in my chest.
So when my doctor’s assistant at my genetic metabolic appointment started emphasizing my heart is huge, I wasn’t surprised. We were talking about my latest echo and there were medical residents in the room. I suppose it was a teaching opportunity. It was when she repeated my heart was huge more than once, and then proceeded to tell me my heart is actually three times the normal size that she really began to get on my nerves and concern me.
Later the same day I picked up a large bottle of a new drug to combat side effects of my high protein diet. As I put it away, “This is not my life,” flashed across my mind. Once, twice, there it was. This is not my life. But I stuffed it down from whence it came, along with my discomfort over the emphasis on my enlarged heart.
The week went on. I decided not to go to my art class because I didn’t have the energy to go. I decided not to go back to university to finish my degree. Diverse though those decisions might be, both had the same effect on me. I knew they were the right decisions, but I still felt sad and angry about having to make them.
February arrived, along with the feelings of survivor’s guilt thanks to Valentine’s Day looming ever closer. (See The Complications of February) Then my sister got sick.
It doesn’t seem like a big deal when I write it, my sister getting sick. Except for one thing. My sister rarely gets sick. Don’t get me wrong, she gets colds, but she is rarely the kind of sick that is incapacitating. When she is sick, it feels like her sickness is something against nature. I am the sick one, she is not. As if by being sick myself I prevent her from becoming unwell. I wish it were that way.
This time she had fever and was absolutely miserable. And when my mom brought my niece Natalie home with her in order to give my sister a chance to recover, my sister wanted to come too. She couldn’t though because of me.
All transplant recipients are required to take immunosuppressive drugs. An immunosuppressive drug does what it implies, it suppresses your immune system. Therefore, the drug preventing my body from rejecting my liver also makes me more susceptible to any illnesses that come my way. So instead of caring for my family members when they are sick, I am told to stay away because it would be so much worse if I got what they have.
I hate it, especially when it comes to my sister. And so when she wanted to come to our house on Tuesday because she had an appointment with her doctor, I volunteered to go out while she was here so no one would have to worry about me getting sick. As a result I found myself wandering the Scarborough Town Centre alone for four hours.
Sometime during the week I had begun reading Middlesex, a novel by Jeffrey Eugenides about Cal, whose whole life is impacted by two recessive genes he inherits from his parents. I, too, have a life impacted by the inheritance of two recessive genes, although in Cal’s case it made him a hermaphrodite, while in my case it gave me Glycogen Storage Disease.
Middlesex is an excellent book, but the story of Cal and his family was not helping me feel better about my life. Instead it reminded me of another incident during my genetic metabolic appointment, when my doctor told me the results from my DNA analysis came back and the lab had found the mistakes in my DNA that conspired to give me what I have.
The use of the word mistake implies there is something wrong with me besides my illness. I am fundamentally flawed, all because two recessives completely beyond my control came together in the formation of me. It’s a daunting prospect, and one weighing heavily on my mind as I wandered the mall alone on a self-imposed banishment from my home.
I came home that night exhausted, but once again determined to put my thoughts out of my mind. The next morning was Wednesday, and this time I had the energy to attend my art class for two and a half blissful hours of getting lost in lines, colour, and brush strokes.
When I came out of my class and my reverie, I bought a slice of pizza and started on my way to my subway stop. Because of a big snowfall the night before, slush lined the roads and as I stepped off the sideway to cross the street, I slipped and fell on my hands and knees.
At the time I was surprised but not overly bothered. I don’t have the greatest sense of balance, and the balance that I do have seems deteriorate quickly when faced with fatigue or slippery conditions. I picked myself up calmly, thanked the woman who handed me my pizza and checked to see if I was okay, and waited for another opportunity to cross the street feeling cold with my now wet jeans and mittens.
When I got home, something in me broke. I was supposed to make dinner that night but the thought of doing anything besides being alone in my room was inconceivable. I had reached a edge of an overload, and the final push over the edge was having to ask my dad to make dinner.
Feeling like a failure for being unable to prepare a meal, I went down to my room and had a long cry. Not just about having to switch my dinner night, but also I cried about everything that had been happening in the past week and a half. When I was done crying, I slept, and upon waking I felt a lot better.
Even though I don’t want to believe it at times, this is my life. And often I forget what Sam says in the movie Garden State about dealing with the problems that come with having epilepsy: “…what do you do? You laugh you know – I’m not saying I don’t cry – but, in between, I laugh and I realize how silly it is to take anything too seriously. Plus, I look forward to a good cry. It feels pretty good.”
Too often I deny myself the healing power of a good cry. I laugh, I shrug things off, I try my best not to let things that hurt me get too close. But sometimes situations or comments from others conspire to bring up something that can’t be ignored or put aside. In those cases, I need to constantly remind myself that there is no shame in acknowledging the hurt, disappointment and sadness I feel, and to let it out by crying.