Pursuing a PhD and Battling an ‘Invisible Disability’

 

Not all disabilities are the same. Not all disabilities are considered disabilities. People have different definitions. The medical community itself has varying degrees of disability. There are invisible disabilities, permanent disabilities, temporary/reoccurring disabilities, and of course, mental disabilities.

Mine falls under the category of chronic illness, reoccurring and, as I like to call it, random disability. This simply means that it comes and goes, pays me a visit from time to time, and at other times, leaves a lingering effect –a presence that demands to be carried within my body. Multiple Sclerosis is not always visible. Not every MS patient is severely disabled. It is, needless to say, incomprehensibly random. I have had days where I was unable to walk without using a cane, and days where I go for a morning jog with my dogs.

Diagnosed at what you might consider a very “young” age, I was eighteen years old when doctors told me that I might as well prepare for a life of being wheelchair bound, and I could certainly forget about higher education. If I got through my undergraduate degree, I would be very lucky. It would be, again, random. One neurologist told me that I had ten years. A decade. A decade until time would be up. What did this mean? I realized there was no way out. Except, well, to hurry up! Clock was always ticking!

It’s been a very difficult, albeit enjoyable, academic journey. I am currently finalizing a PhD in English, with a focus on madness/mental illness. I was lucky enough to be assigned to a supervisor whose area of interest includes Disability Studies. She introduced me to a world of possibilities, of potential research interests, and to a new space of creativity as well as productivity. Before meeting her, I did not understand that academia could actually accommodate me, that I could actually incorporate the personal with the academic/educational.

Pursuing a PhD when every day is more unpredictable than the one before it can be very nerve-racking. A PhD on its own is not only time-consuming, but an unpredictable journey: you don’t know if you will actually make it. I struggle daily with fatigue, the kind that keeps me trapped in bed. My books and computer almost always seem out of reach. Sometimes, they seem like the enemy –the words are blurry and incomprehensible, I cannot form thoughts, and I am left wondering whether there is room for me in this terrifying world of (able) academics. Everyone is so capable, so ‘able-bodied’, and so smart!

So supervisors need to know. Your supervisor needs to be your ally. It might be uncomfortable at first, with the usual “don’t pity me” concept, and “I can do this.”  It is do-able, a PhD is manageable. But we’re not superhuman. Make sure that you and your supervisors are a team. Tackling a PhD while struggling with a chronic illness and/or disability needs planning and careful calculations (as much as it’s also impossible to plan with an unpredictable illness). And, above all, recognize and believe that there is a space and a place for you and your disability in Academia.

 

The Devil and You

The Devil visited me last night, and asked if I would sell my soul.

His trip was futile. A waste of energy (his and mine)

I confessed that I had ripped my soul out of my body, and handed it to you.

That was a long time ago.

I now know this:

The body does survive without a soul.

And we both know that a deal with the Devil would’ve preserved my dignity.