It’s spring, and although these are strange times, it’s graduation season for high school and university students. Because of the quarantine, there won’t be large commencement ceremonies, but students are still putting on their caps and gowns and taking photos with their loved ones. While the landscape blossoms and promising scholars are celebrating commencement in creative ways, I find this a difficult time. This year, all my friends that are graduating are doing so wearing tams and academic dress, and now go by “Doctor,” with the letters “PhD” after their names. While I’m thrilled for my friends and their impressive accomplishments, it is also bittersweet, because I desperately wish it were me smiling proudly in the photos filling my social media feed.
In spring 2011, I graduated from University of Michigan-Dearborn, with distinction. It was a proud moment for me, as it took me seven years to earn my Bachelor’s degree, thanks to complications in life and with my health. On that spring day I felt wonderful. I posed for pictures with my family and my then-datemate. That fall, I started a Master’s program at University of Windsor in Ontario, Canada. I had applied to University of Windsor and Wayne State University with a plan to first earn a Master’s in English, then apply to PhD programs. My dream was to be an English professor, to teach English through queer and disabled lenses. Choosing to attend University of Windsor, I commuted every day to Canada from Detroit to study English and work at the university. I loved the program, but I found myself struggling. I developed severe pain and paresthesia (pins and needles, or a burning sensation) in my feet. I also found myself constantly exhausted. Walking short distances on campus inordinately tired me out. Making those walks left me weak and breathless. It was incredibly hard to keep up with my classes and earn my keep as a TA; first assisting in literature classes, then teaching composition. The building my office was in was next door to the building in which I taught composition and yet the walk left me breathless and weak. As for my classes, I struggled to get all my readings done. Writing papers was a battle. I would fall asleep over a pile of open books and notes at 6 PM, and struggled to focus on my work as fog settled over my brain. My writing suffered. My grades were not impressive. I did receive an A in my favourite class, a seminar on John Donne, but it took every ounce of strength I had to complete the assignments.
I finished my Master’s degree in December of 2012. Commencement wasn’t until spring of 2013, and by then, my body had given up on me. I could not walk even short distances. I was constantly exhausted, even after sleeping all night. I could not get off the couch, let alone work. I could not even leave my house most days, and the only time I went out was to go to the grocery store, where they had scooters for me to use. Even then, it was my mother who filled the cart for me because I could not stand long enough to take products off the shelves. Because of this, I missed commencement and didn’t get the graduation I wanted. I was so sick I couldn’t possibly think of applying to PhD programs; partially because my grades were not where they should be, and also because I was too tired to write a short email, let alone do all the work applying for another graduate program entailed.
It took a long time, and bouncing from doctor to doctor, until I found a competent physician who, after running a battery of tests, diagnosed me with mononucleosis. Mono is not a chronic condition, and I assumed I would get better in time, but I did not. Pain started to spread throughout my body and exhaustion persisted. The pain and tingling in my feet crept up my legs and became excruciating. The fog in my brain reached smoggy London levels, my memory was filled with holes, and I had difficulty finding the right word when I spoke. Eventually, I found my way to a physiatrist (a doctor who treats disabilities), who specialized in pain management. He diagnosed me with fibromyalgia and chronic fatigue syndrome (ME/CFS). Unfortunately, fibromyalgia and ME/CFS are chronic conditions. ME/CFS is thought by some researchers to be triggered by a viral infection, like mono. As for my leg pain, after many years of increasing pain, I was also diagnosed with small fiber neuropathy, another chronic condition.
Because my health never improved, I was not able to go back to work or school. Illness shattered my life and I grieved for my goals and dreams. Over the years, I’ve learned how to accept my disability, to live with my limits. I’m living a very changed life, and have adapted to using a wheelchair or cane, taking pill after pill to manage symptoms, and knowing intuitively the best times to get the important things in life done, like writing or showering. However, I’m still mourning the life I could have lived. While I’ve adapted, I’m left mostly homebound. I’ve lost friends and family, who either didn’t understand my disability, or thought I was exaggerating it. And I’m only now confronting the pain I feel when yet again, a friend graduates with their PhD. It’s not that I think that without a doctorate I or anyone else is lacking. I’m not inferior for not going by “Doctor,” and neither is anyone else. Degrees are rooted in privilege, and not having one does not make a person less than those with them. It’s that the degree, to me, represents the life I’ve lost. I could be earning a living teaching, but instead I’m living in poverty on disability benefits. I could be working hard in the field I love, but am now struggling to even write this piece from my bed. I could be productive and pitching articles, but instead I find it hard to cut through the brain fog or battle the pain long enough to form opinions and craft arguments. I won’t lie; I’m envious of my healthy friends and battle mixed emotions when I see them achieving what I dreamt of.
Grief is not easily beaten. It’s been seven years since I graduated and seven years since my health and life collapsed in a heap before me. This grief is not unlike what one feels when they lose a loved one. My father died 17 years ago, and yet I just recently found myself crying over a Craigslist listing because buying a used car reminded me of him. The grief I feel when I see a friend doing what I no longer can is real, and not to be dismissed. I will probably never get over my father’s death, and I’ll likely mourn my life pre-disability for many years to come. And that’s okay. What I’ve learned is that my experience is not unique; joining the disabled community online has taught me that many people with whom I share experiences find disability and chronic illness have divided their lives into pre- and post-disability chapters. Many disabled people are mourning their former lives. Many people experience painful reminders of what used to be. Talking to other disabled people who experience the pain I do helps, but doesn’t entirely erase my bitterness.
There’s no easy way to deal with any kind of grief. Being disabled makes it hard to move on. I cannot go out and find work that fulfills me in the ways I need. There’s no magic pill to cure me. All I can do is try to salvage what life I have left and try to find meaning in it. That is incredibly difficult to do when you’re too weak to walk around picking up the pieces, and when society tells you that one’s self-worth is derived from what you do for a living. A person’s job determines their class, wealth, and how others perceive them. It’s unfair and wrong, but true. All I can do is work harder to love myself and recognize that a persons’ worth is inherent and not tied to a degree or a career or a savings account balance. I can also share my experience so that other disabled and chronically ill people know they are not alone. It’s difficult to write meaningfully when you have severe, chronic pain and fatigue that keep you trapped on the couch, and brain fog that steals words and eats holes in your memory. A healthier person could likely write far quicker than I, but a healthier person could not talk about disability and grief in the way I have, because they have never wept for the dreams and ambitions my illness stole from me. Working through my grief will require me to acknowledge that my experience is important; that I may not have a PhD in English, but I have life experience that is just as valuable. One of my goals with this blog is to write meaningfully about my experience as a disabled person. I have spent seven years adapting to this life. There are many myths and misunderstandings when it comes to disability and disabled people. I would also like to detail the ways in which disabled people’s lives have meaning. While strangers see me as “wheelchair-bound,” I see my wheelchair as a part of me, a tool that helps me get around and gives me increased mobility. I am not bound to my wheelchair. My perspective on this topic is important, and ablebodied people need to hear it, because they perpetuate ableism (discrimination against disabled people). Despite my weakness, pain, and fatigue, I still have a desire to write; to share my experiences, and to help ablebodied people understand disability. I also have a strong desire to help those in my position, who need to hear that they are not alone, and that their experiences are valid.
All of this will not keep me from crying over friends’ graduation photos. Yes, I dreamt of earning a PhD, and it is truly painful to think that I’ll never be in academia again. Those three letters represent the life I cannot have. But I don’t need those letters to have a fulfilling life. I don’t need them to speak about my experiences as a queer, nonbinary, mentally ill cripple. My knowledge comes from personal experience and my desire to write about being disabled and queer will be my saviour, as it will help me understand that I am no less of a person because I spent the last seven years battling my own body and working to survive in a world that devalues my life. Now I am in a place where I can be more open about my struggle. I will share my unique perspective, and my knowledge of disability to educate the ablebodied people willing to learn. I will also help the newly disabled learn that the world has not ended for them, and I will fight for the respect and representation we all deserve. My life is just as important as anyone else’s, and my experiences are just as valid. This blog will prove that. This post can stand in for the graduation I was too sick to attend.