Not a Funny Blog Post

Although I’m for the most part proud of the adjustments that I’ve made to my attitude toward academia/my professional life, for the last few days I’ve been having a hard time accepting the limitations that epilepsy has placed on my ability to produce. If I look at things reasonably (rational thinking not being a skill that always comes easily to me, outside of my academic work), I realize that when I’m traversing a period darkened by 5–10 seizures a week, in addition to other medical difficulties, I can’t expect to keep up with the lofty writing and other goals that I somewhat arbitrarily set for myself. Yet I exhaust myself trying, then beat myself up when I fall short.

Part of the issue is related to the challenging nature of disclosure. My supervisor and committee members know that I am epileptic, mostly because my two-week hospitalization last spring took the decision whether or not to tell them out of my hands. However, my instinct all along has been to insist that everything is fine, that I don’t need to take time off, that I don’t need extensions, and that I can carry on at the pace that I established in the first few years of my program, when I wasn’t constantly either recovering from a seizure or dreading the next one. In a sense, then, I’ve forced myself into a corner: they assume that I will keep going because I affirm that modifications are unnecessary, and I say nothing, doggedly trudging along and usually meeting my deadlines, even if doing so comes at a physical and emotional cost. My supervisor is a lovely, understanding man who is perfectly willing to accommodate the restrictions imposed by my chronic illness. It’s my unnecessary obstinacy that’s preventing me from being honest with him about what I can handle right now, undoubtedly because admitting to myself that I can’t work like I used to is hard pill to swallow.

I’m still on track to finish my degree on time, but I’ve had to let a lot of stuff go this year. I’ve done fewer side projects, gone to fewer conferences, spent less time in the library. For whatever reason, it seldom occurs to me to focus on what I have done—written 100 pages of my dissertation, completed several translation projects, taught a full-year class, and gone on two research trips abroad, for example. Still, while it’s important to acknowledge the ways in which I have continued to perform, I can’t keep letting more tangible and immediately rewarding achievements impede self-care. One of my doctors recently reminded me that when my medical problems weigh especially heavily, just getting through the day is an accomplishment in itself (it sounded much less depressing coming out of his mouth). It pains me to say so, but he was right. With the awareness that taking a mid-day nap would often be significantly more productive than growing increasingly more frustrated as I stare at the computer screen, waiting for basic words to come to my postictal brain, I’m slowly trying to convince myself that it’s time to figure out how to reconcile my health needs with my academic obligations. Baby steps.

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4 thoughts on “Not a Funny Blog Post

  1. What an important observation. It’s so easy for us to focus on what is lost due to our seizures. This is something I also need to reflect upon, as I’m starting to feel some worry about starting work soon since the surgery that did not work. Will I be able to do what I used to do? How am I going to do it? What if there are days when I’m post-seizure tired or I feel a seizure could come? I know people will be very compassionate and caring in the big picture, but when we have so much work, will they understand when it is task-to-task that needs to get done? Things for me to think about… Particularly the overachiever…

    Thank you for this.

  2. From someone who has finally accepted that Epilepsy is a part of life I can no longer ignore, owning the illness is a very big step that takes some people years to take. Look after your health first – listen to your body. If you need a sleep – sleep! – and long term, you will learn to adapt. Getting your seizures under control is more important than proving to the world (yourself?) that you are totally fine, when you’re not. Wear Epilepsy as a battle wound, without shame – the shift in mindset can make a great difference!

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