Yes, Selma Blair. We are Doing It.
Sometimes a powerful visual of one’s reality is far more persuasive than stringing 280 monotonous words together, enunciating what its like to live with MS. March is National MS Awareness Month, and I always make a point to write something clever to remind people to wear the color orange in solidarity. But my clumsy Swiss-cheese brain gets cloudy while crafting purple prose.
Discerning issues takes concentration and several cups of caffeine. Sentences used to roll off the tip of my tongue with ease. Now because I cannot decide between “they’re,” “their,” and “there,” I tangle myself in knots. They all sound the same. Then inspiration hits you like a bolt of lightning while viewing a cape-less hero, strolling the red carpet at the Vanity Fair Oscars Party. A hero dressed with refined elegance, and a custom-made leather cane, encrusted with a pink diamond. Someone that rolls as I do on a Saturday night. That hero is 46-year-old Actress Selma Blair, and she has MS.
If you haven’t watched her poignant, and bold interview on ABC’s Good Morning America, and aren’t familiar with MS, I urge you to do so. I’ve had the disease for nearly fourteen years and still, I sat in awe watching her carry herself with so much grace, struggling to communicate with Robyn Roberts. Her legs wobbled, her hands trembled like a shivering bird, her voice quaking with raw eloquence, with her gutsy smile beaming across her face for all to see.
It became all too familiar for me.
In that passing moment, I realized for the first time this how my friends, my family, and my social acquaintances see me. This is what I look and sound like to the rest of the world during an exacerbation. That is how I walk. My hands tremble like hers because of my cerebellar tremors. In those precious minutes, I sensed her fears, her relief, and her quenching desire to feel normal. Her life is like mine, and I hold so much respect for her.
Yes, Selma Blair. We are doing it.
Multiple Sclerosis is a complicated, and cruel autoimmune disease that attacks your central nervous system. A great comparison to MS is a frayed lamp cord. The plastic coating around the cord is called myelin. When MS attacks the myelin sheath, wires break thus creating lesions that interrupt signals from the brain to our legs, arms, and our vocal cords etc. The disease-modifying drugs act like electrical tape wrapped around exposed wires. Some break off permanently causing nerve damage. If only it were as simple as purchasing a new lamp. MS is like playing your favorite vinyl on your record player then it skips because of a scratch down the middle. Imagine packing Christmas ornaments in the wrong box. A month later you still haven’t put it away.
Brain fog sucks.
My whiteboard is glued to my fridge so I can write down what I usually forget. Stove off. Check the mail. Pay the bills. Feed animals. Dr. appointment. Take clothes out of the washer. Your life becomes a Rubik’s Cube, searching for a formula to solve everyday tasks. The Disease-modifying drugs have their fair share of complications, leaving our bodies desperate to find a simple rhythm our body doesn’t reject. Some work, others don’t. But you go with the flow.
There are so many celebrities continuing to fight the good fight and bring education and awareness to the disease like Jack Osborne, Jaime Lynn Sigler, Clay Walker, Bryan Bickell, Ann Romney, Fox News’ Neil Cavuto, Janice Dean, Montell Williams, and now Selma Blair. Welcome to the club.
Ever since Selma Blair revealed her diagnosis on her Instagram page, I felt a personal concern to shield others from social media’s willful ignorance. It’s not easy to shed your fears and frailties to the entire world. Especially on social media where any troll living under a bridge chomps at the bit, eager to pick apart your limitations and deficiencies with just one drive-by tweet. No one is allowed to be human any more thanks to the selfie generation. It takes a thick skin, and a dry sense of humor to avoid becoming Twitter’s weekly road-kill.
What if she faced the same ignorant presumptions that I did? Was she told that she wasn’t sick, just lazy? Was she told that “it could be all in her head,” or maybe she’s just a belligerent drunk? I’ve experienced them all, and fourteen years later, there’s still no cure. But I’m still fighting.
I used to be an avid runner. Now I drag my right foot. Escalators suck. Sometimes I’ll stare at the steel jaws for five minutes, till my mind adjusts with my feet before stepping forward. Jumping jacks? Cannot do those. The moonwalk, cannot do that either. But I can place my hand into a helping one, use a walker, a wheelchair, an arm crutch, or even a cane with so much bling, that it flashes like a disco ball. If you’re a fashionista like me, you don’t feel beautiful while on a romantic date or attending a red carpet event. You feel like Norma Desmond.
But as Selma Blair says, we’re doing it.
Hollywood paparazzi enjoy waylaying celebrities for not wearing their Sunday best. Case in point, the disreputable National Enquirer’s tawdry attempt to humiliate Selma just because she had enough courage to walk with her cane to buy coffee. But the grocery rag embellished her condition saying, “The “Legally Blonde” beauty suffers from multiple sclerosis, a crippling illness that could put her in a wheelchair, and eventually kill her!” What a way to kill a fighting spirit. After reading that all I could think about was how Selma felt, and my friends that recently lost their battles with MS. It’s truly depressing.
But we are doing it.
People close to me know that I am still recovering from my relapse last May. This last flare-up was so debilitating that I spent five days in the hospital, and used a wheelchair for five months. I had two new lesions now to battle. I couldn’t walk a short distance, and until my legs improved, driving was completely out of the question. I couldn’t climb the stairs to take a shower, and it took twenty minutes to crawl up them. I couldn’t fix myself something to eat because my brain fog was so bad. I’d fall asleep in the morning then wake up to pitch darkness.
There is nothing worse than feeling helpless or having to reach out to someone. You thrive on your independence and don’t want to be at the mercy of someone else. But it happens. Be thankful for gracious kind hearts. People are genuinely good-hearted, and we as a society should focus more on that nugget of truth. But there are people in this world that suck your energy, drain your senses, and cannot deal with the ups and downs of MS. If you can’t handle me at my worst, you don’t deserve me at my best. And if you can’t handle MS, you can’t handle me. You learn to adapt and learn to do things for yourself.
I had physical therapy in my pool, three days a week for five months. By September, I was back to using my arm crutches and started driving again. It was like crawling out of a dark pit of despair and finally reaching the top again. My legs returned to life, but my memory and cognitive abilities remained shrouded in fog. Selma Blair’s strength to live her life without shame motivated me to do something positive.
The ability to relate to others battling the same disease is the greatest support system you could ever ask for. I walked with my arm crutches from October until January, and now I am back in the gym. No one ever wants to be in a wheelchair. Determined to stay out of it, I’m working out five days a week for two hours a day, strengthening my arms and legs. With guidance under a personal trainer, I know what are my limitations and know when to stop.
MS is like living like Cinderella. Your fairy godmother transforms you into the bell of the ball for a few magical hours while you trip the moonlight fantastic. Your eyes illuminate under the stars, gazing at your prince, believing you’re cured. Everything is beautiful again-until the clock bongs at midnight. You’ve lost your shoe, and have no idea where. Don’t rely on the prince to find it, or for a bunch of blind mice to lead you back on your merry path. Only we know what size shoe fits our dropped foot, preferably a style without a heel to avoid tripping. Darn moonlight. Always believe in yourself first, and take pride in the small victories. So what if you need mobile assistance? Flaunt it with your best cheeky grin.
My goal is to ride my beach cruiser on my birthday. For three years since my last exacerbation, it sits and waits inside of my garage, collecting dust. I rode it only once, hoping to ride it once again, just to feel the desert wind cool my body as the Indian sun warms my cheeks. Just one more time would be nice. I’ll take the moment for as long as I’m allowed. And if it doesn’t happen that’s okay too. Those tiny triumphs help me cope with the unknown, and love myself. I live a Christian life and read my scriptures every morning after I thank God for granting me another day to gaze into a blue sky, kiss my granddaughters, and meet new and exciting people along the way. Defeating fear makes you a warrior. One that never gives up, or gives in, and always keeps on fighting. Let people see the real you, faults and all. That’s the greatest gift that God grants, and wear your orange in solidarity.
Because just like Selma Blair…We are doing it.