This Wednesday Word No. 107, spotted on Pinterest, happens to fall on World MS Day. You might be wondering why I’m posting about multiple sclerosis, one of the most common neurological disorders and causes of disability in young adults. The truth is, I was diagnosed with relapsing-remitting MS on March 9, 2018, after an arduous six-month process of trying to figure out why my left foot went numb out of nowhere. I’ve had to repeat the words in the image above to myself more times than I can count.
MS has been a journey that has challenged me in ways I could never have imagined. I often fear how this autoimmune disease will attack me. How long it will be before I have another flareup. If I’ll be able to walk unassisted down the aisle on that big day when it comes. What people assume when they see my lopsided walk and leg brace (I’ve dubbed it my “bionic boot”!). If I’ll ever regain strength, feeling in my left foot. Whether this was something I could have prevented (MS is caused my environmental factors and is prevalent in people with Vitamin D deficiency). How long it will take me to find my “new normal” and what that will look like. If the sting of (well-meaning?) passersby and strangers greeting me with unsolicited remarks like “What did you do to yourself?” and “What’s up with your foot?” will ever be less jarring. If the physical therapy will be enough to help me get my old gait back.
I try to take these struggles — these minuscule mountains that stand before me day after day — in stride, but I must admit that this battle kicks my butt some days. There are prolonged periods of fatigue that seemingly take forever to shake, where I fall asleep on the couch after getting home from work, only to wake up at 1 a.m. with all the lights on and my dog running around irked because I haven’t yet walked him. There are times when walking to my car a block away from my apartment or even across the office to a meeting room is a chore. There are an onslaught of drifting thoughts that rob me of my focus, and cloud all semblance of collectedness and clarity.
Last week I started experiencing new symptoms — intense tingling in my right leg — and it was super scary. My neurologist recommended I undergo an IV infusion of medrol/steroids over five consecutive days to reduce the inflammation. I laughed when he told me. It was unreal how matter-of-factly those words rolled off his tongue. That’s something that I’m still getting used to — the big words, the unheard-of remedies, the expectation that I automatically wrap my mind around them once uttered. It’s still all new to me. The IV treatment lasts four hours. Today was day two of the treatment. It’s taxing. Saddening. Draining. Uncomfortable. It forces me to sit there and come to grips with this illness. I hope these visits don’t happen often.
As I type this, tears stream down my cheeks from the weight of it all, and Berkeley, my four-legged cuddle bug, promptly hops on my lap to comfort me. It’s these little moments that that give me strength to press on. To the friends and loved ones who’ve checked on me daily; called to chat about current events like Cousin Meghan and her royal wedding; made me guffaw heartily at their East Coast shenanigans; let me know that they “got” me and not to hesitate to let them know if they can help in any way, no matter how big or small; sent me throwback memes and videos (Raise your hand if you remember the 1990s PBS gem “Zoom”!) on the Gram; entertained my antics; presented me with unthinkable theories about the Sixers mascot and “Atlanta” that literally floored me with laughter; made the mundane feel magical; came to have lunch with me at my job; or texted a simple “How are you, homegirl?,” “Praying for you” or “Thinking of you” — it means more to me than you’ll ever know. And a special shout out to my fellow MS warriors who have given me pointers and guidance at the height of my feeling lost. You guys are my tribe and I’m blessed to have you all in my life. I refuse to let my diagnosis be a death sentence. If God woke me up today, that means He has given me a gift that I can’t pass up. It’s my charge to make the most of these 24 hours. And by golly, I’ve been fighting to make them count.
In honor of World MS Day, I hope that you’ll learn a little more about this disease that 400,000 people in the United States and 2.5 million people around the globe are living with. And I hope that if you know anyone with MS that you’ll send them some love today and whenever they cross your mind. We need it to survive.