Provisions for a Unique Childhood

In grade five, my teacher instructed the class to do an organ project and presentation for our science class. One by one, he asked each us which organ we wanted to do. After what seemed like forever, it was finally my turn to share my organ choice: my shunt. It worked out that there were about two or three kids per organ, but of course, I was the only one doing the shunt.

My teacher's eyes widened when I told him my choice. My mom had informed him about my shunt, so he could have told the class what it was, but instead he asked me to. I think I said "sure." Then I felt self conscious confessing to my classmates that I had a plastic tube in my body that went from my brain to my belly to drain excess cerebrospinal fluid that had accumulated when I was in the womb. Will they think this is gross? Will they treat me like I'm "special"?

This instance was the first time I can remember telling people about my shunt, but I always suspected they knew something was different about me. I often had doctor's appointments, was shadowed in classes and interviewed by people from the TDSB or Bloorview Macmillan (now Bloorview Kids Rehab) at least once a year, was excused from certain gym and track and field activities, stayed inside at recess on icy days and needed to take an alternate, less busy stairwell. My mom demanded that school buses have a seat belt for me; for years I took reduced walking routes (or didn't go at all) to Track and Field day at the arena and the Terry Fox Walk. I also waddled a bit as I walked.

Sometime, either in high school or university, I found out that I was also born with a Dandy Walker Variant, which explained many of these provisions better than my shunt because it is a mild malformation of the cerebellum. There are other aspects to the syndrome, but they haven't really affected me. I'm not sure why I didn't know about the DWV earlier. I'd been diagnosed with it either in utero or shortly after. I just remember feeling happy when I found out because it explained my co-ordination and balance difficulties. I'd always assumed these challenges were caused by the shunt, but the Dandy Walker Variant actually caused hydrocephalus, the condition that made the shunt necessary.

I've known for years now, that the Dandy Walker was the reason I had appointments at school to assess my handwriting fatigue and difficulty on stairs. I also know that the Dandy Walker made the icy yard and pavement dangerous for me because I didn't have good balance and co-ordination, but it was also dangerous because if I had fallen on my abdomen or hit my head, I could have injured the shunt. This potentially would have been a life threatening situation that would require surgery. I went to those routine doctor's appointments to make sure the shunt was working properly.

I didn't know any of this in grade five. I just followed the restrictions and accommodations that had been set for me. Perhaps I only knew about the shunt because the doctors examined it at my appointments. Since it's right underneath the skin, I can touch it. My challenges, assessments and appointments were normal for me. I hadn't known life without my issues, so I had nothing to compare my experiences to. I didn't get upset about being different from the other kids; I just enjoyed getting to leave class and spend time alone with my mom. I wasn't fond of cold recesses or high jump anyway. If I'd been bullied or wanted to be like all of the other kids, maybe my issues would have bothered me.

I'm sure my mother, Bloorview, Sick Kids and the the TDSB all felt it necessary to check up on kids like me and provide them with accommodations -- and it probably was -- but now it bothers me that they all expected I would need help. It makes me feel like maybe all of my provisions conditioned my teachers and classmates to think I was less capable of doing things.

Lucky

If I'm not chronically ill, then what am I?

I've been describing the debilitating symptoms I have been having for over five months as "harmless" and telling people that I am "healthy, but I just feel like crap." Now I'm questioning these descriptions which I have used to demean my experience.

In one of my Health and Society classes, I was taught that "health" involves more than physical wellness. If I don't feel well, then in the eyes of my professor, I am not healthy. It seems silly to me, in retrospect, to think that I have considered myself "healthy". How can I be healthy? Chronically feeling awful has hurt me emotionally. I'm not a happy person. Also, I can't be productive, so I have too much time to think. I am constantly bored and lonely, but I don't feel up to do anything about it.

I think my doctors would disagree with this professor's definition of health. For my whole life, I've been told that I'm lucky: I was born with two neurological conditions called Dandy Walker syndrome and hydrocephalus, but the tube in my brain unusually has never broken or become infected. This makes me "lucky," even though my balance problems have made all athletic activities difficult and humiliating, as well as learning things like math and following auditory instructions. My thin medical chart at Sick Kids musn't have mentioned anything about the hardships I endured because nurses and doctors were always happy and surprised at my regular check-ups. Because my life wasn't threatened, I guess sympathy for my other issues wasn't necessary.

I have a cardiac arrhythmia called Inappropriate Sinus Tachycardia, which basically means my heart is naturally fast. My heart is structurally perfect, though, and it's not an irregular rhythm. Oh, and my medications work well enough to give me a normal average heart rate. So my heart racing spells are just anxiety and depression, right? Well, this is what my cardiologist insists, so it MUST be true. Why wouldn't it be? He sees me in his office for a whole five minutes at a time and runs some heart tests, so naturally he is fully acquainted with my mental state. Yes, I'm "lucky," even though I am still symptomatic and I've exhausted my medication options. My next option would be surgery.

I also have severe environmental allergies for which I have been taking allergy injections for five years. These allergies have triggered my asthma, given me hives and sinus problems at various points in my life. I have fused spinal discs in my neck and a curvature in that same area, both of which give me pain and severe tension. My feet are flat and this hurts me too. I have a long history of severe sensitivities to drugs -- at least that's what I assume the vomiting and weakness have resulted from. And one of my eyes is lazy or something -- I forget. It only became a problem when I got sick several months ago. Now the opthamologist says my eyes tend not to work together properly. Or something like that. Even he said my eyes work the same way they would if I was drunk. I told him my prism lenses help me with this, but still, he says they are "a crutch" and I shouldn't use them unless I'm really tired. So, I must choose to feel drunk simply because I don't "need" glasses?

I think I've decided to share all of this in blog because I am sick of being humble. I am that way because doctors have been training me to think that I'm lucky and in turn, I have felt guilty for being sad about my issues, or feeling like I've had a difficult life. I've been sick for over five months with post viral symptoms like balance and vision problems, abdominal and leg pain, leg weakness, nausea, light headedness, etc. and it is only now that I've thrown my hands up and said, "I can't do this anymore." I've tried saying it before, but I couldn't because I had watched SickKids commercials with children in the hospital for a year. So when I felt myself starting to say "I can't do this" I would tell myself to "buck up." I felt that by allowing myself to grieve over the loss of my quality of life, I was being selfish and cowardly. I didn't want to become weak mentally, especially after priding myself for being so strong and enduring more medical experiences than the average person my age.

Now I see that my chronic humility has been making me weak, mentally. I find it so hard to look someone in the eye and say, "I'm having a hard time." I just want people to see the happy, optimistic Ashley. I tell people I'm sick, of course, but I always feel guilty for complaining. I feel like such a broken record. There is nothing new in my life and usually feeling crappy is the first thing on my mind when someone asks me "how are you?"

I'm also sad because I've missed out on so much since I got sick. I graduated after five years of university and couldn't celebrate; I've missed many birthday parties, including my own, and I can't work. I wanted to gain money and experience for Centennial college in January, where I will study Corporate Communications and Public Relations. Instead, I will have to "Pause," as my favourite Emily Carr had to a couple of times in her life. She has inspired me to use this "Pause" to reflect on my humility, my relationships and my future career. I've been writing a lot in my diary, but it's time to make everything public. Other people deserve to know what it's like to be "lucky."