LETS TALK ABOUT MS

Even as a kid, I knew every dandelion was special and every person valuable. My superpower was seeing their sparkle! When my vision started fading at 25, I was uninsured after a job fell through. The stress had made my whole body spiral out of control, but I put off getting help until my sight was really just totally gone and I couldn’t manage at all. I didn’t see sparkles. I couldn’t see anything. My parents insisted I go to an emergency eye doctor.

He said my eyes looked perfect. That’s normally what you want to hear, but this meant the problem was in my brain. I’d also had other symptoms, like the inability to swallow, nausea, and numbness (my feet legit felt like tree stumps), but my doctors and I had been explaining those away as side effects of my recent pregnancy, or as a node on my esophagus, or acid reflux. In combination with the blindness, though, my options looked like:

– Multiple Sclerosis (MS)
– Brain Tumor

I got an emergency MRI. Without insurance, I was sure we’d have to wait a while for the results. My family and I were out at dinner when we got the call that it was the most extreme case of optic neuritis my Neuro-ophthalmologist had ever seen. There was no tumor, but I had to go in and talk about treatments, because, apparently, MS had presented as dozens of lesions on my brain.

It was just the beginning. My numbness spread from my tree stump feet to my hands, fingers, and one whole side of my body and face. I had severe difficulty with mobility, and incontinence. It was humiliating to need adult diapers in my mid-20s, but, hey- that’s “the disability world.” So many of us feel out of control. Bowels are just one part of that.

My autonomic nervous system was hit. I had severe heart-fluttering palpitations. My lungs would forget to breathe, like the punchline of a blonde joke but in real life. Not so funny. It wasn’t funny when I was trying to take care of my infant son during all this, and I had to use all my strength to crawl from the nursery to the kitchen so I could warm up formula. It was stupid. Just stupid. It  was absolute hell.

I tried an injectable drug, which was the only MS medication that protected my ability to have more children someday. My husband and I really wanted more children in our family. Unfortunately, it didn’t work for me. I then tried another drug 8 months later that gave me such severe stomach issues that the pain was worse than childbirth.

I vaguely remembered seeing sparkles in others, but I’d all but forgotten my own. I couldn’t even remember what hope looked like. I fell into the darkness and called the hospital, desperately depressed, and begged them to give me *something.* “I have no hope. Please. Please just prescribe me something now.”

Suicide is the leading cause of death in people with MS because this feeling of impending doom is inescapable. There’s the depression tied to a perceived lack of having value, which isn’t the truth, of course- everyone has value- but it becomes so hard to see.

This was a debilitating realization that my desperation was about to take my own life, and that acknowledgment was enough for me to focus on rest. Deep rest… I slept for 3 days. When I woke up, I had clarity for the first time since being diagnosed at 26. I knew something would have to give, and I couldn’t let it be me. If my body was the enemy, my mind would have to be my warrior partner.

I decided to embrace radical gratitude. I dug into the support community. I celebrated the heroes who lived each day as though it were a gift in spite of literally crippling conditions.

When I was diagnosed with MS, my whole family had gone on high alert for research that might help. One day, my Dad, who is super practical, called me with research he found about neuroplasticity, he was so excited and called it “magic.” Sure, most of my friends and colleagues know I’m something of a “unicorn” at work, and we laugh about it, but I’m here to tell you that magic is actually real.

I had brain damage from MS and the stress that had exacerbated it, but neuroplasticity exercises helped me to restore some lost functions, making new connections. My brain started rewiring itself. Clearly, I had superpowers. Magic. You can use this to treat negative thoughts, too. I counted my blessings. I developed a habit of turning every thought into a positive one, like a game. The more positive thoughts I had, the more I was winning!

I adopted a ketogenic diet. Ketones are produces when your body uses fat for fuel instead of carbs. Researchers don’t know exactly why it helps yet, but those ketones protect you from inflammation and may also send more energy to the brain. Magic.

I went on Gilenya from Novartis, which was a godsend! I’ve been on Gilenya for a year now and things are pretty much stable, though I do have permanent side effects from MS, like visual impairment, and numb hands and feet. Remember, though, that I thought my body would never have any normal functionality again. I’m grateful for the team who brought Gilenya to market, and to the doctors who communicated its benefits to me when it was prescribed.

I am also tremendously grateful to the Patient Access Programs that helped me get on this medication even though I couldn’t afford it. So many people have no clue that the Pharmaceutical industry has these programs, but they do everything they can to make sure people can get the help they need, even taking responsibility for it, themselves.

Gilenya has given me my first real hope that I won’t be a vegetable in a few years, and can maybe even dance with my son at his wedding someday. If I can keep stress levels low, I may actually live something like a healthy life!

But MS is a beast of a condition that’s still very much a question mark. There are links we don’t understand yet between depression and MS. It’s possible that one may cause the other. I’d love to see medical researchers learn more about the mental health connection.

I’d love to see more understanding of MS in general, as well as of its “sister diseases,” ALS, Alzheimer’s, and other neurological disorders. I know the University of Wisconsin has been making incredible strides, doing cutting edge medical studies and experiments, and doctors are very hopeful for future of this disease. If they’re hopeful, I’m hopeful.

Currently, my only medicinal side effect is nightly nausea, though this could also be diet-related, as I had no real baseline to refer to from before I went on my medication. But It’s so worth it. It’s nothing compared to losing control of my bowels or having lightning bolt stomach pains. I can deal with a little nausea, and with the headaches every other day. I can pop an Advil and feel well enough to sleep. I feel like I have control again.

I still practice rewiring my thoughts. Taking control of each one and making it magical! Making sure I don’t feel alone; reaching out if I need to. This is crucial. Not just for myself, but because it’s so important that I don’t let myself slip back. I am in a position to be able to help others. I have a purpose that I am so sure of.

I am an advocate for MS patients. For all differently abled people. I see their sparkle, even more so now that I know the kind of superpowers we each develop just from getting used to conquering huge obstacles on an everyday basis.

I speak at events, through LinkedIn videos, and directly to organizations to help them develop an inclusive culture.

I’ll never forget how my job situation caused such stress in my life, and I’ll never know for sure, but it probably contributed in a major way to my getting MS to begin with. In contrast, I now hope to inspire more workplaces to support mental wellness.

My current employer at Valicom is magic! My boss gets it. Our company does it right. First of all, I’m given the tools I need, including multiple computer screens. I’m respected for what’s special about how I work now. Sure, it may take me time to scan an image or document, but I also don’t miss a single detail!

I think about the dandelions I saw as a little girl. I knew they were special! Do you know the dandelion principle? It applies to the differently abled workforce. A dandelion may grow in a field of lush grass and be seen as a nuisance- a weed to pluck and throw away because it’s “not a fit.” That kind of stress can only make a differently abled person’s struggle even harder.

But the right gardener will see what’s valuable about a dandelion. Will know that it has cancer-fighting minerals and benefits that can be made into teas. Magical. It takes the right workplace to build a culture that nurtures each individual’s beautiful mindset. To nurture the magical properties of each person.

I remember feeling like I would never have value, but I was promoted to Marketing Director at Valicom after less than a year and a half as Marketing Manager. They see my magic, and they make sure I know it. The result is that I am fiercely loyal to them! They have a lifelong ambassador in me. I want to inspire other companies to adopt the same philosophy and approach.

I remember being lonely and empty. I want to inspire other MS patients and differently abled community members to reach out. You are NOT alone. There is hope! Believe me, I remember my darkest thoughts, but my own mindset now is my greatest ally. My MS mindset. The one that taught me to believe and to thrive, even on days I didn’t know if I’d even survive. To be grateful for connections and real relationships and for every single thing my body can do.

I can swallow? Magic! I can move my legs? Magic. I can speak to thousands of people at a time? Magic. I can be a quality worker and friend and leader and wife and mother. I can train my thoughts to see my glass as half-full. As all the way full! As overflowing! I can write my story and share it with other people. Magic. If you’re reading this, give yourself some credit. Some respect. Some faith. Some love. You’re a magical dandelion, too.

~ Chantel “Bubbly & Blessed” Soumis

To contact Chantel for patient advocacy or other speaking opportunities, reach out to her on LinkedIn or e-mail support@sourceexplorer.com.

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