When the Endpoint of My Illness Continues to Move Away From Me


As a small child, I had a simplistic view of what it meant to “grow up.” It wasn’t necessarily that I would have the highest paying job, or own a herd of dogs (though that was definitely a priority). The thing I always wished for was that I could “grow out” of my health problems. That miraculously when I turned 18, all the things that had affected me would suddenly disappear or become easier to overcome. I wished for the ease everyone else seemed to have, of going about life with every opportunity available to them, or the luxury of being young and feeling invincible.

I’ve had everything from minor health woes to major life-threatening conditions. I’ve lived through the whole spectrum. At the grand old age of 23, I have to admit I’m pretty tired of it. I like to think I had two good years of being grown up like I hoped: from when I graduated school at 17, to when I fell suddenly and critically ill at 19. Those two years were not perfect. I still struggled with many things in my life, but they were briefly free of most scans and tests and endless doctors appointments. I look back in amazement at only having two regular medications rather than the dozen I now tend to cart around with me.

I assumed that as I progressed through my degree, I would become more independent and have more experiences. In reality I was suddenly and cruelly restricted from interacting in the world, of accomplishing my longed for goals. It was such a sudden shift, from one day working seven days a week between university, a part-time job and prestigious internship to being bed-bound, unable to get to the bathroom, so ill I stopped knowing who I was or who the people around me were. It all felt a vast cry from the lives of my peers and beloved friends. I never begrudged them their achievements, but it felt bittersweet when my own felt unattainable.

It felt like the endpoint of this hell kept moving. First it was six months, then a year, then two, then five. Now it’s anyone’s guess. Recovery didn’t mean what I thought it would. Rather than steady progression back to peak physical and mental fitness, every step brought new complications. Sometimes it feels like the medical burdens I carry are more than any one person should ever have to endure.

Rather than endlessly torment myself with passing dates and “failings,” I have decided to change the goal posts entirely. I have the rest of my life to recover; in fact, I may never be as healthy as I was for those two brief years. And that’s OK. As far as I know, there is no parallel universe version of me to show what my life would have been like had I not gotten ill. Even if I had not gotten encephalitis, I may still have gotten cancer. We’ll never know.

There might not necessarily be light at the end of the tunnel, but it turns out there’s still some bloody cool stuff happening in the tunnel itself. I don’t have to dream about the day I’m “better,” I can celebrate whatever steps I have made and how I live my life right now. Part of who I am now is shaped and informed by the experience of being so unwell; I would never have realized my own resilience. That’s not to say if someone had a magic pill I could take tomorrow and all my health worries would evaporate that I wouldn’t take it. There is still a large part of me that longs for normality and stability. But there’s nothing wrong with having a brain and a body that are a bit different. I don’t accept that I won’t be able to ever do the things I want, but I do accept that I will do them in a different way.

It turns out the tunnel has pretty cool people in it too. The people I have connected with in this big wide world of disability and disease have show me the variety and spice of life that can be achieved against all odds. That you can have every diagnosis under the sun and still have an identity outside your illness. I don’t have to be defined by what has happened to me, but it will always influence myself. I could be chronically ill the rest of my life or miraculously cured tomorrow. And for now, that’s OK.

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