Everyone struggles. We all have personal battles that throw a curveball in our plans. Multiple Sclerosis is an autoimmune condition that is viewed as a chronic, crippling, and disabling disease – however it doesn’t have to be this way. Telling my story isn’t meant for sympathy or sorry’s, but rather to evoke conversation which leads to education and progress in the way we think about disease. Even in 2014, the year of my diagnosis, resources were limited – which goes to show how far we still need to go in determining the cause and finding a cure. My hope is that no other person newly diagnosed with MS feels alone – I hope that my story can be but one of many resources in their healing journey.
I think the hardest part was looking up at my mom after my first spinal tap procedure and mustering up the courage to tell her that I have Multiple Sclerosis. Waterfalls of tears flooded to the floor even before I finished my sentence and I will never forget the undeniably loving grasp of our hands while I lay reclined in a padded chair, her beside me, both of us lost for words. Above all else, above even pain or anger or shock, there was immediate shame – the reason why this particular moment may remain the most difficult of my life.
Rewind to early 2013. It was a Saturday. I didn’t know it then but that moment now signifies the earliest detection of an MS attack. I’ve always been a self-proclaimed party girl, loving what came after dark. From booze to midnight snacks to party friends – this is what I lived for. That Saturday, however, was different. Besides the usual hangover and extreme laziness, what was strange was how I passed out and woke to find myself next to the toilet, head on the white marble floor, spinning, heavy, and seeing stars. I had enough energy to lift myself off the ground and shuffle to the bedroom, eventually hurling my body sideways onto the bed where I lay and dialled my best friend to tell her how frightened I was. I couldn’t move – it was as if my body had turned into a thousand bricks. I turned on Sex and the City reruns and passed out for the rest of the day and into the night. The next morning, life went on without a hitch. It was a fairly decent Sunday and the following days were back to normal as if that moment was just a horrid nightmare. My ignorance in regards to medical attention blocked so many early warning signs of Multiple Sclerosis: itchiness on the front of my legs, insomnia, aggravation, balance issues, and falling (let me remind you that no two diagnoses are the same and everyone can experience very different symptoms or warning signs). The number of wipe outs should have given it away, yet it was easy to blame it on my levels of intoxication. Plus, why would I assume I have MS if I’m just a drunk klutz? Whether it was a small bail down some stairs or a huge slip in the bathroom of a dirty bar, my body could not keep up with the toxins I was ingesting – and it showed. It screamed. It cried. But I never recognized what was happening to my body because Multiple Sclerosis was just NOT on the radar. Not my radar, my friends radar, my doctors nor my parents. I was “healthy, so on I went with my life as I’d been living it for the past 14 years: Binge drinking, staying up all night, working all day, spending my precious time with friends and family, and regretfully (and unknowingly) killing my body.
To set the record straight, there was more to my life than partying. I took care of myself to the best that I knew how. I’ve always been active. I danced, played soccer, and went to the gym. I enjoyed a good jog. I grew up in a rather healthy North American household, where a well balanced diet provided me with a healthy conscience (I ate a lot of organic but also a lot of antibiotic ridden proteins, fat-free options, gluten, dairy, faux sugar and real sugar). I was successful at school and at work. I drank lots of water, practiced yoga, enjoyed hikes and days at the beach, and didn’t smoke cigarettes (besides the music festival hoots). Some major vices were alcohol, chocolate covered banana chips, ranch dip, bulk nut mixes, mayonnaise, White Spot, and brie – oh how I loved (love) to snack and dip. And that wasn’t even the half of it. I also enjoyed these vices as substitutes to my main meals of the day. I loved to binge eat. To the untrained eye that saw me from the hours of 8 AM to 7PM, I was just another ordinary young woman.
In May 2014, I attended a pilates class where we sat on small medicine balls to work out the kinks in our behinds. After class, the right side of my butt felt numb and cold. A few days later I noticed the numbness creeping up around my right love handle and into the top of my groin. The panic started to set in.. I went to the Emergency Room just to be turned away with extra strength Tylenol and the treatment to rest, recover, and forget about it. My numbness started to move down my right leg, from top to bottom, eventually into my right foot. My GP did nothing for me but suggest the same as the emergency doctors, and she told me that my symptoms were not considered urgent enough to see a specialist until potentially 6-8 months down the road. I left bewildered and lost (and without a request to a neurologist) and over the next few weeks, the numbness literally jumped from one foot to the other like a game of leapfrog. This time I went back to my GP in tears. It wasn’t until this moment where I truly showed signs of weakness and pain and worry that she took notice – she could get me in to see a neurologist in 4 months. I left angry, confused, and frustrated by the medical system. Something serious was happening – I struggled at work and could no longer run. Google wasn’t making it any easier: “Symptoms of Multiple Sclerosis”, “Early signs of MS and how to cope with a new diagnosis”, “Numbness in legs, MS symptoms”. The SEO list was long. I’ve never spent so many days in a row crying alone.
During this time, my role at work required me to walk all day, often involving short sprints and quick movements. That wasn’t easy. Because of the numbness in my legs, they weren’t functioning like they once were. They were stiff, awkward, weak and tight. It was weird. Within a month and with some luck, I saw my first neurologist. After some excruciating muscle tests where I felt like a science experiment plus the general EDSS (Expanded Disability Status Scale) test, he sent me away with few answers. Within a week he requested a spinal tap (where the story began). If you are unaware of what it entails, it’s as weird as it sounds: You roll on one side in the fetal position at the mercy of your doctor, hugging your knees tight and breathing slowly. A needle goes in at the base of your lumbar spine and you wait as liquid collects in a petri dish, drop by drop. It’s over in a matter of minutes yet it feels like forever. July 1st, 2014, the doctor confirmed: Yes to Multiple Sclerosis.
I walked out of the hospital at age 27, defeated. I felt that a part of myself had died. Fuck (sorry), I thought I might as well be dead and join Club 27…but then I thought of all of my family, friends, lovers, ex-lovers, and special souls out there in the world I still wanted to meet. I thought about my purpose in life and all of the goals I wanted to accomplish. And I thought about how rich life can be when filled with dignity and love – and I was not ready to give up on living.
On July 2nd, I went straight to the medical diagnosis and healing section at my local bookstore. I ran my hands down the side stacked books, seeing titles like: Coping with Cancer, Dealing with Depression, Living with an Illness, How to Live with Parkinson’s. Lucky for me, I found the one and only book that will ever mean anything to me. Healing Multiple Sclerosis by Ann Boroch. Literally, it was the only resource on MS, even though over a whopping 100,000 Canadians are living with the disease (and the number is rising). Finding that 440-page book by Ann changed my life forever. It was serendipitous. It was emotional. And so, my journey to try to reverse my MS diagnosis started right then and there.
My story continues. Read Part 2 here. In the meantime, if you have any questions or thoughts, you can leave them in the comments below. You can also email me at carllechatten[at]gmail.com.
