Unexpected Illness

Three months ago I was diagnosed with multiple sclerosis.

It started last year when my tongue was feeling tingly. Initially I chalked it up to probably having burned my tongue eating or drinking something hot that I couldn’t remember. After a few days of it not going away, half of my face went gradually numb. At first they thought I might be having a stroke but tests were coming back negative. The ER doctor said, “The first thing to rule out is a stroke. After that the second path of investigation would be MS.” It took a lot more tests and doctors over many months to get the confirmation, but that good ER doctor totally called it that day.

Realizing that I am the bearer of a lifelong, currently incurable disease is an odd place to be. It’s not something you ever expect or wish to happen, obviously, and finding myself there is a slightly unsettling change in perspective. I’ve always been generally healthy. I’ve always been the one supporting others around me. It’s not just that I did support others, but that I also saw myself that way. For my entire adult life, that was my role. I defined myself as, and struggled with, putting the people I love first. Now it’s not so clearcut anymore. It’s still early in the disease, but I have to come to terms with the fact that I will eventually, and from time to time, need my family, friends, and colleagues to understand and support me.

During the investigation prior to the diagnosis, I told myself that I would just keep living my life and not let the disease define me. No matter what happens, I would keep rowing. That’s me. I’m good at that.

But since the diagnosis was made official, it’s been a harder realization. And it’s been difficult to understand what “define me” means. What is it that defines us, is it what we believe deep in our hearts and in our minds? Or is it what we project about ourselves, what we say, what we write, what we divulge? Those two things are not always aligned. Some things we believe but we prefer to keep to ourselves, especially in this privacy-challenged world where revealing too much can be problematic, if not dangerous.

I still don’t want to let MS define me. At least not yet since it’s so early. For now my disease is mostly invisible. People don’t know I have it unless I tell them, and even if they do, they don’t seem to know what to say, so keeping quiet about it is relatively easy.

I was afraid that saying online that I have MS was going to define me. But after thinking about it for three months, I’ve decided that what defines me is my outlook. It’s the way I see the world. What defines me is how I choose to react in the face of adversity. And that’s something I can share with you. I’ve benefited so much from reading other people’s personal experiences over the years. It’s one reason why I love blogging. It’s also why I loved Rebecca Saltzman’s Family Tours in the Kingdom of the Sick. Writing this, for me, is a way to give back. And if what I share ends up helping even just one person out there, then it will be a continuation of me supporting others, which is what defines me.

I can’t complain. My only symptoms so far have been sensory: numbness, tingling, touch sensitivity. My skin sometimes feels wet when it’s not, and most often like it’s burning. I’m lucky that I don’t have, at least not yet, debilitating symptoms such as balance issues or loss of vision. Even if MS is still incurable, I consider myself lucky to be diagnosed at a time when there are many treatment options available. One person close to me was diagnosed 35 years ago. It feels unfair and humbling that I have access to treatments that were developed through the trials and suffering of so many others before me. All one can do is marvel at the progress that’s been made and honour their contributions by trying to live well.

Because my symptoms have so far been invisible, I find myself feeling lonely at times. I struggle with telling people I’m not feeling well. Most of the time it’s not painful, but it’s still uncomfortable. The sensations that affect me are difficult to explain. Even if I find words that seem accurate to how I feel, I imagine that others won’t relate to them. First-hand experience is kind of a prerequisite for understanding why it doesn’t feel good. I get excited when I read someone in the MS subreddit describe their sensations. But I don’t feel that way when talking with family and friends. I often find myself having to re-explain what I’m experiencing, and trying not to correct people when they bring it up inaccurately. That’s OK, it is what it is and nobody’s fault. By default, disease is isolating. For everybody.

It is strange to think that my brain has lesions that are causing these changes in me. They’re right there, so close under my skull, tiny and only visible to very specialized equipment. Can’t they just be removed or cleaned up somehow? I’m a software engineer; can’t the bug be fixed? I keep thinking of Star Trek. In sci-fi stories, they consider 21st century medicine barbaric, and they always have pods that can heal just about anything.

The good thing that came from all this is that it explained sensations that I had been experiencing for years. For a while I hadn’t been feeling 100% and it was difficult to explain how. It shed light on why parts of my body felt strangely sensitive. I think of odd transient pains I’ve experienced that puzzled me. I incredulously used to worry that I was getting old already.

So now I know it’s just that my brain was slowly getting damaged by my own immune system. It’s been in my head the whole time! My family was relieved to see that I haven’t lost my sense of humour.