I was eighteen years old when my neurologist informed me that I would never be able to do anything that my peers would. I was told that I shouldn’t compare myself to people my age, that I was now dealing with a chronic illness, and that I would have to adjust my life and brain settings to accept loss. Losing one’s senses is terrifying. Losing the ability to walk, to see, to hear, to feel – to name a few examples – leaves you very afraid of the future. The uncertainty that comes with living with MS, an unstable and very random disease, can diminish any sense of security that we tend to take for granted. For the past 12 years, the minute I open my eyes in the morning, I look up at the ceiling and realize I’m still here, I can see, and that my legs are functional today.
But I digress. Even though living with MS has been quite scary, it has also given me the desire to live life to the fullest, to live in the moment, in that moment where everything is okay, I am still here, I am still feeling like myself (or the closest version to my old self).
So in 2014, I finally earned my PhD in English Literature. People have congratulated me, as they always do with any success. But I do not feel that being academically successful has been my goal. I merely wanted a chance at pursuing a dream, a goal, and a sense of identity. My PhD is not just academic success, it is a personal one. When I had my Viva, like all other PhD students, I was scared and tense. I was not sure if I could answer the examiners’ questions, if I could prove that my work was good enough, and if I was capable of establishing ‘new grounds’ for academic research. What was worse though, I was not sure if I could handle hours of an oral examination without my body (and brain) shutting down. I informed the examiners and the Disability Office ahead of time that I would require a break. Because I suffer from extreme fatigue, my body chooses to start shutting down at the worst and most unexpected times. And that was exactly what happened during the defense. After about half an hour, I was starting to see blurry examiners, my speech slurred, and my hand announced its tremor. My body needed to rest, to sleep, as soon as possible. And yet there was no escape. I had to keep going, and when the main examiner noticed that I was not feeling well, he asked me if I was okay. Now, if you know me at all, you would know how difficult it is for me to say “No, I’m not.” I despise having to do that, to admit defeat, especially at times where I really have to be okay.
I was given a five minute break. I stepped outside, took a deep breath, and started stretching. Stretching my muscles helps relieve some of the spasticity. Of course I looked very silly, I am certain, and the examiner was surprised to see that that was my idea of a break, rather than a bathroom break. Finally, after hours of going through the endless sections of the thesis, I was informed that I was now Dr. Shahd Alshammari, and that I had passed without any corrections. The external examiner commented that both examiners had noticed how tired I was, and said “despite your deteriorating health, you did well.” After the viva, my body crashed for a week.
And today I am writing this post, months later, realizing that it was never about academic success. It was never about the degree. It was always about life. It was about a chance. Just a chance, a chance to be, to become. I am no longer that eighteen year old who was told to be realistic, that my disease was progressive. I am now a twenty-eight year old who believes my disease is progressive, and being realistic means living despite reality. Sometimes it just takes a bit of dreaming, a dose of optimism perhaps, a belief that there is always that one percent that life can give you a chance, a shot at being. I have realized that it was really never about the destination, and that it has always been all about the journey. I got to travel – and go places, and that has defined my life in endless ways.
Below is the photo I insisted on taking with Professor Abdulrazak, Head of Department at Kent, and Dr. James Watt, of Cambridge.
A Hybrid Biomythography 