Nine months have gone by since my heart transplant and I find myself in a weird place. I have a new heart so I’m not in heart failure. I’m not dying anymore. I can breath easily and readily. I feel like I have more zest and energy for life. In that sense, I am healthy. While I’ve never really taken life for granted, I am especially aware that every day I get with my friends and family is precious.
But at the same time, I’m still sick. My glycogen storage disease will always be in my body no matter how many organs are removed and replaced. I’m dealing with side effects from my drugs. I’ve gained what seems to be a chronic case of cytomegalovirus (CMV). I’m seeing eight different doctors above and beyond my family doctor. And I’m looking into getting a walker because my muscles are feeling the effects of years of abnormal glycogen storage and/or are being affected by my ongoing case of CMV.
Sometimes I look at my life and think, “How did I get here?” and “Where is here anyway?” When I first started thinking about my liver transplant as a teenager, I remember feeling that I didn’t belong to the world of the healthy or to the world of the sick. Being post-transplant is kind of like being in remission from cancer. The cancer itself might be gone, but the consequences of treatment still have their effect. Which is why when I read Susanna Kayse’s Girl, Interrupted, I truly understood when she wrote, “…it is easy to slip into a parallel universe. There are so many of them: worlds of the insane, the criminal, the crippled, the dying, perhaps of the dead as well. These worlds exist alongside this world and resemble it, but are not in it.”
Survivorship is another such parallel universe. It is defined by dictionary.com as “the state of being a survivor of life in long-term survivorship (five years or longer) of patients who have experienced breast cancer”. But survivorship is a term that has expanded to include cancer in general, and should also be used in the world of organ transplantation as well.
Living in a parallel universe is like speaking in code. I learned a long time ago that in the normal world childhood tales of throwing up blood, transplant scars, liver biopsies and hospital visits, translate into horrified looks, sympathetic looks and remarks about my bravery and strength. I tend to react negatively to all the aforementioned translations.
The worst part is the sense of being on the outside, beyond the gravitational pull of the normal world. Like I’ve gone through too much to ever re-enter its atmosphere. I look at magazines and wonder how volunteer plastic surgery is an attractive option to people. During melancholy moments I wonder what the point of it all is, and why there is so much superficiality in a world where I feel loving and caring for people should be the most important thing. I feel apart from reality, locked in my world of life and death moments, and almost constant worry over how much my body can endure.
Thus, when I have a day where I transcend the world of survivorship, I am ecstatic. A couple of weeks ago when my sister’s car got towed because we were shopping and forgot to change parking spots before rush hour, I told my friends about it because something normal had happened to me and I was excited. My friends thought I was wacko of course, but it meant the world to me.
What I enjoy about being in a parallel universe is finding someone else who lives there too. Suddenly my childhood stories are normal and require no pity because in this world, my world, that’s just life. Joking about who’s gone through more and comparing scars is awesome. Getting to talking about life, illness and the separation between worlds in a candid way keeps me going, and gives me a chance to be myself instead of trying desperately to fit in to what is considered the normal world.
I’d like to say if I had a fairy godmother who granted me the choice between living in the normal world or the world of survivorship, I’d pick the world of survivorship. Except if I really had the chance to be normal, I’d be greatly tempted to take it. When I was a young girl in my gym class changeroom, when I had to make my before school bloodwork trips, when I missed my favourite classes every year because I had to have my liver check-up, when I started dating – all I wished for was to be normal. Even though being normal would mean giving up everything I’ve learned and overcome, essentially everything I am.
Since I will never be faced with having to make that decision, I don’t have to seriously contemplate the potential betrayal of myself and my experiences. Knowing that I am a permanant citizen of the world of surviorship frees me to look for what I do appreciate about it. This may not be the world I would have chosen to live in, but there is beauty here.