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How Cancer Has Opened More Doors for Me Than Encephalitis


Cancer has become a bit of a trump card for me. I think it’s because most people immediately know not only what it is, but also how serious it is. My other conditions tend to be rare and difficult to pronounce, but cancer is simple. People don’t need to know what type I had, they just need to know I had it.

In the last three years, I’ve had two major life-threatening conditions: meningoencephalitis and epithelioid sarcoma. Some would argue one is more important than the other. I would counter that they affect me in different ways.

The cancer means I’m at constant risk of recurrence; at any moment, a new tumor could start to grow. It puts me at risk for the rest of my life (though the chance of recurrence is greatly diminished after the first five years). In the most crude sense, it changed my body from one with two thumbs to one with one-and-a-half thumbs.

It meant I had to relearn to do many things, and I had to come to terms with what some could argue is disfigurement.

The meningoencephalitis (or a combination of meningitis and encephalitis) fundamentally changed the way my brain and body works. It’s a bit like a factory reset, where some of the data got mistranslated. I’ve had to come to terms with a brain and body that no longer does everything it used to.

Everything in my life was changed.

Strangely enough, most people are more willing to accept the consequences of my cancer rather than the consequences of my encephalitis, despite both being life-threatening and both most likely impacting me for the rest of my life.

Cancer has opened more doors for me than my encephalitis ever did. Part of it is education, the other part is physical.

Cancer is known and publicized; encephalitis isn’t. When you look at me, you can easily see the effect of the cancer on my body: part of my hand is literally missing.

From the outside, the encephalitis is quite well hidden. It’s not immediately noticeable that my body is weak or that my pain high. From the outside, you can’t see my brain or the changes in it.

With cancer, I’m suddenly an inspiration. I give hope to others, and I’m a beacon of resilience and determination. But all those qualities were there and witnessed before I had cancer.

At university, there are suddenly hoards of people offering assistance, wanting to help me with everything. I’m constantly asked about my “journey” or “battle.” Sometimes it feels like the encephalitis never happened. It’s as if the only health struggle people are interested in are the last six months of my life, and not the years preceding it.

Generally, I counter the new interest with information — information about my cancer, but also everything else I am dealing with. It’s an opportunity to make others more aware of invisible disability.

It’s a bit like some terrible advertising slogan: they come for the cancer, but stay for the encephalitis.

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Thinkstock photo by Antonio Guillem