‘DISabled to ENabled’: How I Lost Control of My Body
“My arm feels dead.”
Not the worst thing in the world, you would think. But what it meant changed my life forever.
I’m Jessie Ace, an English writer from Swadlincote, a town in Derbyshire. I titled my column “DISabled to ENabled” for a good reason. Six years ago, I was bundled into an office at the hospital and given handbooks with titles like “Telling Your Workplace About Your Disability,” “Disability Rights,” and “How to Tell Your Family You’re Disabled.”
Thing is, I didn’t feel any different than the previous day.
It all happened in three days.
I woke up on the last morning of getting my university degree to find that I was paralyzed on my left side. “Well, that’s weird,” I thought. I didn’t want to scare my partner, so I told him my arm was numb.
Annoyingly, I’d worked for the past three years on an illustration degree, only for it to become null and void overnight. The worst part was that I’d also set up an illustration business in my second year to ensure I had a job when I left. More annoyingly, the business was blooming. An agent had offered to represent my work at trade shows, I had a book deal, and my work was stocked in boutique stores all over the country. All I had to do was finish my studies.
Then I lost my right hand, too. Two non-working hands meant that I had lost all of the above. Worst of all, I had lost confidence in myself.
I’d never been hospital-worthy sick. I’d only ever visited people in the hospital. Being taken to the emergency room and put on a stroke ward was a shock — it terrified the pants off me. I felt out of control. Doctors started feeding me into various machines, and nurses hooked me up to beeping monsters.
All I wanted to do was lie on my couch watching soaps on TV and celebrate the end of university.
Three days later, a neurologist came into my cubicle, drew the curtain around my bed, and sat at the end of it.
He calmly looked me straight in the eye and said, “Jessie, I’m afraid I have some bad news.”
My. Heart. Sank.
“I’d like to do one more test to confirm it completely, but I think you have something called multiple sclerosis.” He paused.
“Oh,” I replied. I didn’t really know how to respond. My mind had already begun flooding me with pictures of wheelchairs, and I had convinced myself that I had 10 years left to live.
A lumbar puncture — which is delightful, by the way (English humor) — confirmed the diagnosis. I had no idea what multiple sclerosis was. Before he left, my doctor told me to research it in my own time on Google. He left the cubicle.
Admittedly, I did not take this news too well. My life was over. Everything I knew had gone.
Unfortunately, my boyfriend’s mother walked into my cubicle just as the doctor left, so I sharply pulled back those tears. My howling melancholy would have to wait until I was in private once again. I had to be strong for her, to show I was still an adequate match for her son — although I could have robbed a bank and she’d still have loved me. But that was my mindset at the time.
It took four years to come to terms with my diagnosis. It took six months for my left side and right hand to come back. The trajectory of my life had completely changed in three days. I would no longer be a famous illustrator. I learned that the universe had something bigger in store.
Writing blogs, articles, and columns was never at the forefront of my career choices, if I’m honest. Neither was talking. I was the shy, unconfident, socially anxious girl who hated even saying, “Yes, miss” in the school register.
But I aim to inspire others living with chronic illness through my podcast to show that anything is possible, and that is more important than feeling anxious about speaking.
The podcast also is called “DISabled to ENabled.” I’ve interviewed actresses, radio DJs, Paralympians, and people who have run marathons, fundraised like crazy, and even won TV cooking shows.
I also set up the ENabled Warriors group to provide a safe place for newly diagnosed young people to go to not be alone. Together, we negotiate through our diagnosis and try to see the funny side of it.
I hope you enjoy my column and I look forward to chatting with you in the comments section.
What was your diagnosis story like? Please share in the comments below.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.