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A Bad B-Movie With a Happy Ending: How I Made Peace With MS
An Epiphany: My MS Is Not Just My MS
By now, having MS is a part of me, like writing with my left hand or brushing the curls of my hair. It’s not separate, but part of the whole package. I’m so used to living with a chronic illness that if I stopped writing and advocating tomorrow, I doubt I’d think much about it.
After 27 years, I’ve grown accustomed to being unable to feel my right leg, losing my balance, or being plagued by overwhelming fatigue that makes me feel like I have the worst case of the flu.
When I was diagnosed at age 28, I was forced to quit my job, give up my apartment, and move back home with my parents. I walked with a cane and my hands were numb. The world felt surreal as I went through the motions of smiling, walking, and talking while life seemed to move forward in s-l-o-w motion.
It felt like a bad B-movie that was out of sync.
The large doses of steroids pumped intravenously into my body made me blow up like a big balloon — a nice little side effect that shocked well-meaning family and friends, whose facial expressions made me feel like the fat lady at the circus.
I remember the first time I left my parents' house, feeling a little better, to venture back out into the world. My father wanted to escort me downtown for a short walk and some fresh air. As we approached the end of the sidewalk, he instinctively grabbed my elbow to help me cross the street. In my medication-induced haze, I remember thinking how sweet that was. Dad always treated me like a lady. But somewhere, in my heart of hearts, I knew this tiny gesture now meant so much more. Because this time his young daughter had an unpredictable and incurable disease, and when he gently held onto my elbow, it must have given him solace to know that at least he could still help me step off the curb.
I wanted to become invisible. I believe I died a little bit inside my heart that day.
I finally realized how wrapped up in myself I had been. I hadn’t stopped to consider my loved ones. I finally had an epiphany: My diagnosis was not mine alone; it also belonged to those who cared about me. My friends and family were also deeply affected, and I hated that they’d be worrying about me. What could I do to change that?
I had a plan. I wanted to muster all of my inner strength to get myself back on a road toward wellness. I wanted to remain as independent as possible and have the happy, joyful life I’d always dreamed of having. Was that possible?
I knew I didn’t want my life to be only about my MS. And so my MS journey began. I chose never to ask myself the question, “Why me?” but rather, “How can I change my life to make it better for me and my loved ones?”
A New Chapter: Invisibility and Hard Work
There are four types of MS; the type I have is the so-called “best” one — relapsing-remitting MS. Sometimes it's referred to as an invisible illness because people can’t see your symptoms, a reason there’s an educational pamphlet about MS titled, “But, Oh, You Look So Good.”
Invisible or not, our symptoms are real and wreak havoc on our lives every day. To us, it’s never an invisible illness. But I wanted my MS to be as invisible as possible to others so I could continue enjoying my independence without anyone worrying about me. And I didn’t want to be made to feel disabled by well-meaning or not-so-well-meaning people.
So I began the hard work of occupational and physical therapy to relearn how to walk and use my hands with my new normal. A clinical psychologist who specialized in cognitive changes in patients with MS helped me regain my cognitive skills.
Keeping My Independence – Again
My hard work paid off. I’ve led an independent life (alongside my loving husband and son). It’s been a rich and full one so far. I’m following my dreams of becoming a writer, something I’ve wanted to do since I was a little girl. I hope, someday soon, to write a book, and that will be one more item to cross off my bucket list.
Has it always been smooth sailing? No. Have I completely stopped family and friends from worrying? No. Have there been times when people think I’m lying about having a disability or not feeling well? Yes.
I figure that’s simply life and the human condition. Unlike the classic films I love, real-life has no scripts with perfect endings. People believe what they choose to believe. Those of us with MS must teach ourselves to tune out any toxic chatter. We have to. Because our healthy survival depends on trusting and believing in ourselves, and using the abilities we have to live our best possible lives.
Now I know I’m a midlife, friendly introvert. I’ve finally settled into knowing myself better. Isn’t it incredible that a life-changing diagnosis helped me spread my wings to realize who I am? I’m excited to tell my friend about my journey of self-discovery, and now we can continue our conversation on an equal playing field.
Cathy Chesterwas diagnosed with MS in 1987 during the “dark ages” of MS, when there were no medications or Internet. You can read about her on her blog, An Empowered Spirit: Living a Healthy and Vibrant Life After 50. She is a regular contributor to The Huffington Post, and also blogs for MultipleSclerosis.net and Boomeon.com. Her Empowered Spirit blog was named No. 2 of the Top 10 Social HealthMakers in MS by Dr. Oz’s Sharecare, and one of the Best MS Blogs by Healthline and WEGO Health. She has been happily married for 26 years and has a college-aged son and three cats. You can follow Cathy on Twitter at @CathyChes.
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