PhDisabled

PhDs are tiring. Deadlines, reviews, reading, writing, meetings, ethics, worrying that you are not smart enough, and boring your family and friends with your specific knowledge and problems with a fraction of a section of a discipline. It takes 3 years before you can add ‘Dr.’ before your name, and unless you are granted a scholarship, you also have to work. By no means am I complaining about having this wonderful opportunity, but I wanted to express the difficulties I’ve encountered having a major physical disability whilst completing my PhD.

I have a rare form of disability (especially rare for women) called Limb Girdle Muscular Dystrophy. It’s a genetic condition which involves the deterioration and weakening of my muscles from the neck down over time. I can walk a few steps with aid, but spend most of my time in a wheelchair and need help with most daily routine activities. Luckily it won’t affect my speech or mental faculties, so I can always make myself heard and understood. I’m in my second year of a PhD in neuropsychology, specifically researching autistic children. I make my living by tutoring undergraduates and occasionally writing the odd piece on my area of speciality. I don’t get any special treatment at my university, and I prefer it that way but sometimes I want to (metaphorically) stamp my feet, throw a tantrum and rant about being tired, worn out and in physical pain.

Ever since I was a child, my parents knew there was something physically wrong with me. After years of being fobbed off to different specialists, I was eventually diagnosed at age 11. I have always been fiercely independent and refused to use a wheelchair in the first few months of high school. As part of the condition’s symptoms is bad balance and lack of strength, I finally succumbed to the wheelchair after months of attending school being petrified of being knocked over by rowdy pre teens. From then on I’ve been adamant that I don’t need special treatment or considerations in life based solely on my disability. It’s resulted in a lot of people calling me ‘brave’, which has always confused me. What is brave about wanting to be treated equally?

Another common comment I receive when people hear I’m doing a PhD is that I’m ‘inspirational’. Would they say that to an able bodied person? Admittedly, sometimes I inspire myself. I look back through my short life and my achievements and think ‘You know Holly, for all the obstacles that have been in your way, you’ve done alright. Keep it up’. Other times, when it’s late at night, and I’m sitting up in bed reading my 27th paper and my neck and back are screaming in pain, I feel like giving up and mooching off the government for the rest of my lousy life. Of course, all PhD candidates experience this, but I don’t think they all need to recuperate after short trip to the grocery store, need daily physiotherapy, or need to ensure that every venue or place they travel to is wheelchair accessible. If I’m unlucky enough to catch a cold or develop the flu, I’m flattened. Imagine being at the weakest you’ve ever been, then add a flu. Sometimes I feel like the boy in the bubble, if a member of my family is sick in any way, they’re not to come near me!

Unfortunately, with my physical disability comes a mental one too; depression. I’m on medication for it and it’s under control, but sometimes the monster rears its ugly head and the last time this happened I’d spend hours at a time unaware I was gazing numbly at a blank wall while time to work on my PhD submission slipped away. I’d open my work document and stare at the pixels on the screen. I thought it was stereotypical writer’s block until I started to not want to leave the house, and then my room. I’d experienced a suicidal thoughts/plans depression black hole a few years previous and was scared this would be my last one. Luckily this bout left me so numb and unmotivated, I couldn’t be bothered ending my own life. I was petrified of facing my supervisor and admitting I had done nothing in the past few months. I got to her office, my depression robot took over and I very matter-of-a-factly told her I suffer from depression and that I was in the middle of an episode. Luckily, I work and study in my university’s psychology faculty so it was nothing she hadn’t seen before. She reassured that she knew that I knew what I was talking about with regards to my literature. She asked me right then and there to tell her what autism is. I could easily verbalise it, of course I could, it’s my life’s work and passion. “Great, now go home and write down a few sentences about autism. That’s it. No more” she said. My clouded brain hadn’t even considered the possibility that I could condense my work into bite size pieces. It worked. Within a few weeks I was back on track. I’d increased my anti-depressant dosage, and the fog was lifting.

A year later and I’m about to start my experiment. Unfortunately, this usually exciting part of one’s PhD is at risk of being dampened by my body’s regression. I am right handed, but I have relied on my left hand and arm for most tasks as it physically the strongest. My disability has interestingly made me almost ambidextrous which if you HAVE to find the silver lining, is a cool bonus. However, over the past few weeks I’ve experienced a noticeable decrease in strength and control in this arm. It’s frightening. What will this mean in a month? A year? What abilities will be removed permanently from my life? Brushing my teeth? Picking up a drink? Actions that the average able bodied people don’t think twice about are now disappearing before my eyes. It is difficult to take a piece of paper in the form of a PhD accreditation seriously when I’m losing my independence and livelihood day by day. What’s the point?

The point is that I have no choice. If I had nothing to strive for and distract myself with, I would ruminate on my body’s fate. I’ve done that before, and it nearly killed me. So when people call me ‘brave’ and ‘inspirational’ it makes no sense to me. What’s my alternative? This is me surviving.

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About FearBlandness

I'm a wannabe science rockstar. I'm of the mistaken and narcissitic Gen Y head-space that people want to hear about my opinions. These opinions include: religion,psychology, skepticism, feminism, literature, science, media, culture,biology and neuroscience.

Posted on June 7, 2015, in Uncategorized and tagged , , , , , , , , , . Bookmark the permalink. 5 Comments.

  1. Yes,well, i have followed a path similar to you Holly. I did manage to complete grad school at UC Berkeley in Clinical Social Work. It was about time that part of of body previously unaffected by war began to break down from ” over use syndrone”. At present my right leg is frightenly weak and my right hand at times weak. So i remain stuck in my wheelchair and somewhat dependent on others. I can say that after grad scool i was able to pursue my profession and went on to teach at university. So i had a good twenty five year run including grad school.
    I wish continued strength to you. I also believe that one continues the struggle because, well, they have no other choice.

  2. I have LGMD also and got a PhD in physics a number of years ago. I could still walk when I was in grad school, but the MD definitely was causing a lot of problems. Good for you for persevering, and best wishes for success in your research and your life! One minor point: unlike some other forms of MD, LGMD is equally likely to affect females and males.

  3. I am in undergrad and also hope to go into neuropsychology. I too have Limb-girdle. Thanks for the article

  4. Jessica MacGilvray

    I have always considered you to be what my mother used to refer to as a “going concern” by which we both mean a worthy person who has much to contribute. Whether such a person gets to contribute isn’t always up to them, which is proof positive that we live in a random and arbitrary world where fairness and justness are very fragile. It’s hard to comment on a rant like this without sinking into ableist rhetoric and platitudes, but suffice to say that I am glad to know you and I feel privileged to have been able to get to know you, even a little bit through your writing and youtube. Thank you.

  5. You’re certainly not alone in feeling the pressure of a PhD grinding you down – it’s a course that’s almost sure to bring on depression in anyone susceptible… Your supervisor sounds like a keeper though!

    Keep in keeping on and whatever else may occur you’ll be able to know that you added, however slightly, to the sum of human knowledge; and that’s pretty kick-ass! 😉

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