The Phoenix Zine

Letting it all Out

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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.

2 Comments

  1. So, in my attempt to search your Blogs for a topic about sex, sexuality, sexual relationships, intimacy in intimate relationships, I gave up and used the blog that came up during my “sex” key word search (middlesex)lol.
    Because next week’s class and articles focuses on the partnership between spouses I thought Id get a head start on it. Also because these ideas were in my head before break in today’s class, and as you can tell since its 10:20 at night im looking to vent a little.

    So I have yet to read the chapter about Money and Sex, but id like to first ponder the questions we asked about today in regards to definitions, and what is chronic illness vs disability?
    Since I have an academically “sexually curious” background the first issues that came to mind were things like erectile dysfunction (anemia, uremia and testicular dysfunction. Like in any other chronic disease, psychological problems like depression and anxiety, leading to decline in sexual desire)Hep C(or D) , vaganismus, and low estrogen/testosterone. Are these things considered chronic illness or disability? In my opinion they are a mixture of both, and there is overlap. But again in the debate of visible vs invisible, illnesses such as Hep c are invisible where as Herpes virus and erectile dysfunction over lap.
    And although there are adds for Viagra to help with erectile dysfunction, if you listen to the commercials, the side effects limit many of the population they are targeting ( side effects such as vision issues and blood clot/ thinning issues which middle age men are more likely having conditions with already).
    My point being, Viagra is a bandage for a “illness” that is underlying, what is the cause of the erectile dysfunction?

    On the other spectrum, which is where I believe the readings will lead…What about illness/diseases/disabilities that are not directly related to sexual organs but prevent a person from either being sexual or enjoying sexual activities.
    Chronic back pain affects the sex life of an individual to a large extent.
    For a person who constantly needs a catheter, are they able to participate and enjoy sex?
    HIV/AIDS?
    Paralysis?
    This website gives a few ideas on ways to help a couple, but this isnt the extent of it by any means.
    http://familydoctor.org/online/famdocen/home/articles/768.html

    Ive talked before about advocating, and I feel that even though we seem to think “sex surround us” as a culture, in the medical world, sex is about anatomy and physiology.
    A Prof of mine is doing her Thesis on the lack of sexual comfort that professionals have today. Dr.’s are not comfortable talking about sex outside the medical discourse, Therapists (besides sex therapists) are referring more and more clients to “specialists” when sexual issues arise, and I feel as though a major population that is getting completely ignored when it comes to sexual information is those with chronic illness and disability, and how they can incorporate sex into their lives without being in pain, or maybe even without actually engaging in the act of penetration itself ( because of specific limitations).
    Parents (and yes siblings), of individuals with chronic illness or disability should not only teach about the birds and the bee’s but should be there to help their sibling or child find the right person to talk with when they are ready to become sexually active; Someone who is educated about illness/disability. For example; if someone has severe asthma, they may see sexual activity as a trigger. A professional should be able to give them other ways to be intimate with a partner.

    Finally, there needs to be more support for couples who get married and then experience a traumatic experience where one spouse is diagnosed with and illness or becomes disabled. How do they adapt their sex life? Society cannot expect them to refrain from an act they once enjoyed together.
    It’s sad that there are wives or husbands or partners out there that want so badly to be intimate with their other half again, but due to the cut and dry, cold medical discourse it becomes so hard to talk to a Dr or even bring it up.

    As I mentioned in class, “The Other Sister”, touches on the topic of both “mentally challenged??” characters wanting to be intimate with one another. Yes, because they are still human, and still have skin hunger and the desire to express their emotions in a sexual way. Just because someone is ill, disabled, (or any other bodily hurdle they may face) it doesn’t mean they are a-sexual and do not get the desire and need that others without illness or disability do. They just need the support system that educates them on the easiest or less “pain free” ways that might work best.

    But unless society lets go of the “sexual fantasy” that surrounds us every day with by throwing sexual perfecting in our faces (i.e naked models on billboards and magazines), we won’t be able to bridge that gap.

    But anyways, that was my rant, and no matter what I will always bring you a sexual side of any perspective.
    Thanks for reading!
    :)

  2. Just a side note! this is the perfect sibling post too!! there is a LOT of what we talked about today!

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