‘DISabled to ENabled’: How I Lost Control of My Body

‘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. 

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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.

Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.
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Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.

7 comments

  1. Vanessa says:

    Jessie you story is very inspiring and one I can relate to. I was diagnosed August 2018. My mom has had MS for 26 years. Hearing my diagnosed scared me silly but something inside me told me to get up and as long as you have life, you have opportunities.

    I’ve always wanted to continue my PhD and following the diagnosis I wrote a proposal and received a 6 figure grant to support my research. I performed the best at work where persons didn’t even notice I had MS.

    My family and I are moving half way across the world. I’m nervous, grateful, thankful and optimistic.

    Be encouraged and thanks for sharing! Sometimes we have a plan but there is a greater force with its own plan.

  2. Rob Teer says:

    Hi Jessie, I’m no “NEWBIE” to MS, as I was diagnosed for my 34th birthday in Sept. 2012. As my luck would have it, when I graduated, all my friends chose to go off and attend college, whereas I chose simply to GO TO WORK. The rest is history from there. Contrary to your own description of yourself, it’s actually my “MOUTH” that carried me. And carry me it did, into a sweet outside sales position making over $100k per year, driving a brand new (at the time) company truck, which was a 2013 pearl white extended cab Chevrolet Z-71, complete with a mounted laptop in the console and a printer in the back seat to print invoices. I’d FINALLY MADE IT! And I didn’t hafta go spend THOUSANDS OF DOLLARS putting myself into debt paying for college to do it! Things had been going so well, me and my wife had decided to have a baby, and it just so happened to be she was almost 6 months pregnant on the dreadful day. I turned 34cof Sept. 4th of ’12, and it was roughly 2 weeks after that I happily without a care in the world went to bed on a Friday night, then woke up BLIND the next morning! BLIND! HOW COULD THIS BE? It was Saturday, so I didn’t hafta go to work. So in all of my greatness and unparalleled “MANLY” ways of thinking, I was able to convince myself I’d just go to sleep that night, and wake up on Sunday like nothing had happened. Naturally, my “MAN” plan had no chance and didn’t work. I was STILL BLIND when I woke up Sunday morning, only I could barely WALK then, and looked as if I’d polished of a 5th of whiskey upon climbing outta bed. We go here, go there, doctors call me and explain I need to come back to the hospital. It would’ve been nice to have knownthat I would be staying, but whatever. I’d WAITED to have kids, not really knowing if I really wanted to have any, as compared to most of my other friends who it seemed like they’d started having within weeks of graduating high school! I’d worked tirelessly towards achieving the goals I’d set regarding my career, and had FINALLY MADE IT! My wife and I had FINALLY CHOSEN to have a baby, and wouldn’t you know, it’s a BOY! EVERYTHING had begun falling into place, and outta nowhere I’m RAILROADED! How would I ever throw baseball, football, or shoot basketball with my little boy? The WORRY, FRUSTRATION, and STRESS took me to some extremely dark places, I won’t lie. I even had myself convinced for a while that they’d be better off WITHOUT “ME”, having to be my EYES, cart me around in a WHEELCHAIR, and wipe my butt! The doctors first said “3 to 6 months your vision will be back, then it was 6 months to a year, the a year or two. How’bout close to 4 YEARS!! To get to where I am today, which I can’t even say for certain is the way it WAS, only that it’s my “NEW NORMAL”. I can see to drive, read, and function properly now though. I began with a heat tolerance, so bad I couldn’t even take a WARM SHOWER without my vision becoming blurry and wavy, causing me to start walking as if I were drunk. So exactly 2&1/2 years later, COMPLETELY BY ACCIDENT, our SECOND little boy was about to arrive, and we had to have a house. So, I bought one. I grew up in the country, catching crawdads in the creek, riding bikes to the river fishing, and hunting. Probably a good example of what you may refer to as a “REDNECK”. I really do have a shotgun, a rifle, and a 4 wheel drive, just as Hank Williams Jr. sings in his song “A Country boy Can Survive”. So I simply could not bare the thought of having 2 little boys laid up in the house all day. So, soon after we bought our house, I went OUT! OUTSIDE! IN THE DEAD OF SUMMER! I live in Alabama, so if you’ve ever heard of “HUMIDITY”, it’s MADE IN ALABAMA, and distributed throughout the globe. It was HOT! I fell down. I bled. I threw up. Then, I fell down, bled, and threw up more! But I BEAT IT!! WHAT HEAT TOLERANCE? I can get as HOT & SWEATY as I want now! But then, I’ve always been what my mom always called “HARD HEADED”, in that if and when I set my mind to doing something, I’ve usually ALWAYS DONE IT, right or wrong, good or bad. People know the best way to get me to DO SOMETHING, is tell me NOT TO DO IT or that I CAN’T DO IT, because I’ll break every bone in my body trying, and that’s just “ME”. I’ve been able to play with dump trucks and bulldozers with my 2 little boys as they’ve grown, currently ages 6 and 4. How many Dad’s get the opportunity to do THAT?! Not very many in my neck of the woods, I can say that. The Lord has kept me healthy and relapse free ever since. Sure, I’ve had over 80 infusions of Tysabri, and I’m sure it helps. However, I personally know the TRUTH, and it’s the Lord who has kept me well. I’ve also became extremely “IN TUNE” with my body, or maybe I’ve just learned to actually “LISTEN” to it. Either way, I’ve fed my body whatever it told me to feed it. I figure, if you put GOOD THINGS IN, then you’ll get GOOD THINGS OUT. So, I developed a regimen which I’ve stuck to now for close to 3 years. I eat once a day. Cut up spinach, white meat chicken, cheese, oranges, grapes, apples, strawberries, blueberries, (everything but the kitchen sink), and top it with a Vinaigrette. I also drink apple cider vinegar nightly, and pure, raw, unfiltered honey (one if nature’s best anti-inflammatories) and NUTS! LOTS OF NUTS!! Whatever doesn’t fit on top of my salad, I finish straight outta the can usually. I just turned 40 this past September, and honestly, even though I have MS, I really don’t feel much over 25! Apparently I don’t LOOK 40 either, or that’s what people say with that UNBELIEVABLE LOOK smeared over their faces upon hearing I’m 40. This year in September will be my 8 year anniversary of having MS, and to be perfectly honest, I wouldn’t change it for anything in the world. Yes, it sux. The pins and needles, the left foot dead today, whole right leg tomorrow uncertainty is always looming in the back of my mind which keeps a huge question mark above my head, but I’ve simply learned to wear it. Nobody knows what tomorrow will bring, so for me to worry about it seems a bit asinine. Although, I’ve never really been a “WORRIER”. If it breaks, I just fix it, havilevit fixed,vor buy another one. I feel it’s better to just go ahead and accept the FACT that you will get in your car one day, and it won’t crank. Or, you’ll be driving down the road and clang, clickety clang, your car breaks down stranding you on the side of the road. It’s not a matter of “IF”, but simply “WHEN”, because it WILL HAPPEN. So I find it ridiculous to get upset and pissed about it. Life HAPPENS! Things BREAK DOWN. Our bodies included. We know we have to change the oil in our cars and run the right fuel in them to “MAINTAIN” them at their peak performances, but why do we treat our bodies COMPLETELY OPPOSITE of the maintenance and care we put into our vehicles? We KNOW we’ve gotta get up and GO RO WORK, so our vehicles had better be kept or maintained in such a way that they’re DEPENDABLE for us to get to our jobs. Although, if we plan to go to work, our bodies must be present as well (in most cases, with exceptions like working from home and whatnot), yet we throw processed and fast foods into our bodies as if they’re of less value than we place on our vehicles!! So ultimately, no, I never wanted and still don’t WANT TO HAVE MS, but the way I see it, is it COULD ALWAYS BE WORSE. So my hand won’t work today, but at least it’s still THERE! Or maybe my back’s killing me from the CONSTANT SPASMS I experience, but then my back COULD BE BROKEN as well. There’s ALWAYS something good to be found amongst any bad, as long as one knows how and where to look. Keep your eyes open, and continue finding the good. As long as that tiny bit of good can be found, then it’s NOT ALL BAD!!

  3. Jennifer Sand Bodurtha says:

    I am 58 and was diagnosed with MS about 32 years ago. I think. Have boy/girl twins who are now 27. Have followed the low sat fat diet with several supplements..Omega 3, cut D,B12, etc. ..

    No longer work but have written a children’s book, as yet not agented or published. Not giving up on that prospect and hope you will my book on bookshelves and in libraries.

    Title: Harriet Hiccup Henry Takes on the Teasers.

    Please let me know if you have any contacts with whom I can get in touch.

    Take care everyone😘!

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