EDITOR’S NOTE: After a diagnosis of Primary Progressive Multiple Sclerosis changed the life she knew, Debra Jo Myers spent years grieving what she had lost before discovering that acceptance didn’t mean surrender.
The Day Everything Changed
Like the lacy ice crystals that branch out to form a flake of snow, a disease was splintering into fragments inside me, creating my own snowflake. Snowflakes are unique, mesmerizing and beautiful. I certainly didn’t feel like any of those things.
It began on a February day when all it seemed to do was snow. I was getting ready for work when a sharp pain struck the middle of my back. It felt like someone had stabbed me with a knife. I’ve never actually been stabbed, but that had to be what it felt like.
I sat down, and when I tried to stand again, my right foot had gone numb.
I made it to the car. To this day, I wonder what would have happened if I hadn’t decided to stop at Redi-Med.
The doctor sent me to the local hospital. A CAT scan, blood work and X-rays revealed nothing conclusive, so they transferred me to a larger hospital. Fear built inside me when the ER doctor insisted I travel by ambulance.
What was happening to me? Was this really an emergency?
After twelve hours in another ER, an MRI revealed a large mass on my spine. I underwent a spinal tap and begged anyone who entered the room to tell me what was wrong. The nurses kept telling me I had to wait for the neurologist.
When he finally walked in with his round glasses and clipboard, I already knew something was terribly wrong.
His bedside manner didn’t help.
He explained that inflammation had formed a mass on my spinal cord. My nervous system was attacking itself, damaging the myelin that protected my nerves and disrupting the signals traveling between my brain and the rest of my body. Until the inflammation cleared, he couldn’t determine the extent of the damage.
Then came the diagnosis.
Primary Progressive Multiple Sclerosis. PPMS.
There was no cure. The disease would continue to progress, although treatment could help manage my condition. Looking at my scans, he believed I’d probably been living with MS for decades without knowing it.
I couldn’t get any words out.
No cure? It would progress?
Then I remembered my Papa. He used a wooden cane. His hands and feet were curled. He couldn’t hold a spoon or wear shoes, and he refused to go to the doctor.
Maybe Papa had MS.
We’ll never know.
I asked more questions. Could treatment stop the disease? Would the feeling return to my foot? Could I return to work?
The neurologist compared people with MS to snowflakes. No two were alike. Symptoms, progression and treatment varied from one person to another.
At 52, I knew almost nothing about MS.
The only person I’d ever known with it was the mother of two girls who rode my school bus when I was in fifth grade. She used a wheelchair. When I asked my mother about MS, she simply told me that people who had it were often unable to walk on their own.
That was all I knew.
Now I had it.
Grieving the Woman I Had Been
Before MS, I managed a grocery store and worked 50 hours a week. I played basketball and jumped on the trampoline with my grandchildren. My husband and I walked our dog, Boo. We planned to travel across the country by car, stopping at attractions along the way.
Now I couldn’t walk more than a few feet. I couldn’t drive. I had to leave my job and go on disability.
The woman I’d worked hard to become seemed to be melting away.
I became depressed. Didn’t want to get out of bed because getting up meant confronting my new reality. Stopped caring about how I looked and avoided leaving the house or talking to anyone.
I had once oozed self-confidence. I liked myself, my body and my energy.
Now I struggled to see myself as sexy.
Yet when I looked in the mirror, I looked the same.
My disability was invisible, but its impact on my life certainly wasn’t.
I had always been fiercely independent. Now ordinary tasks required more effort, and my husband took on responsibilities I’d always handled myself.
I hated what MS had taken from me, and what it had changed.
I moved through denial, anger and bargaining before getting stuck in depression. Acceptance remained stubbornly out of reach.
Severe fatigue, nerve spasms, inflammation, numbness, balance issues and cognitive problems became part of my everyday life.
I kept asking the question no one could answer.
Why did this happen to me?
What Does “Fine” Even Mean?
My family tried to help without treating me as though I’d suddenly become someone else.
My adult children preferred to keep our relationships the same as they’d been before MS. I appreciated that.
The eldest daughter told me not to expect her to look at me differently. She reminded me of everything I’d already overcome and knew I was too motivated to sit back without a fight. She also knew how independent I was. If I needed her, I would ask.
Then, in her usual humorous way, she said, “You, a snowflake? You can’t be because I hate snow. And I love you.”
Friends were more complicated.
Most knew very little about PPMS. Since I didn’t look any different, I sometimes felt as though they doubted me.
They told me I looked good.
I became accustomed to telling everyone who asked that I was fine, whatever “fine” means.
Usually, I wasn’t.
“You’ve got a good husband and family to be grateful for.”
“Be happy it wasn’t worse.”
I’d be dishonest if I said those comments made me feel grateful. When I woke every morning, I wasn’t thinking about being blessed. I was thinking about having an incurable disease.
Strangers couldn’t see it at all.
One man asked who I’d bribed to get a disabled parking license plate.
I burst into tears.
Another time, a friend told me my condition couldn’t be that bad because I didn’t look sick.
That became one of the strangest parts of living with an invisible disability. MS had transformed nearly every aspect of my life, yet because people couldn’t see what was happening inside my body, I sometimes felt as though I had to convince them it was happening at all.
Finding a Doctor Who Gave Me Hope
A year after my diagnosis, my husband insisted we find another neurologist. He didn’t believe my doctor had invested enough time or effort in helping me.
Changing doctors became one of the best decisions we made.
My new neurologist spent an hour with me during our first visit and gave me that same attention during many appointments afterward. She didn’t simply manage my condition. My doctor worked to slow its progression and minimize my symptoms.
She developed a combination of medications to relieve my pain and calm my nerves and started me on a treatment specifically for people with PPMS.
More importantly, she gave me hope.
The difference between my two doctors troubled me enough that I eventually reported my first neurologist to his superiors. His appointments rarely lasted more than fifteen minutes, and I never felt that he fully explained my test results or treatment options. Some of the first medications he prescribed also caused terrible side effects.
I kept wondering how many other patients might feel as dismissed and frightened as I had.
When you’re facing a life-changing diagnosis, you should be able to trust your doctor.
My new neurologist didn’t cure my MS, but she changed the way I approached living with it.
That felt like a new beginning.
Nana Is Still Nana
Talking to my nine grandchildren, ranging in age from 3 to 23, brought another challenge. Each had a different set of questions, and none knew much about PPMS.
The older ones reacted most strongly when I explained the things I could no longer do, including driving to visit them or taking them places.
With the younger ones, I had to become inventive.
We played old board games, painted funny pictures and watched movies. I started telling them stories about my childhood. I also began explaining the monster inside me in ways they could understand.
MS changed what I could physically do with my grandchildren, but it didn’t change who I was to them.
Nana was different now, but I was still Nana.
My Husband, My “Snow Blower”
My husband and I had been married for four years when MS entered our lives.
We met in community theater when he auditioned for a play I was directing. He was talented and funny, and watching his eyes light up onstage drew me to him.
We became fast friends. Then a mutual friend died young, forcing both of us to think about how much time any of us really gets. I wondered what I was waiting for.
I confessed my love and told him I didn’t want to wait to start our life together.
We made plans to travel across the country, hike, explore, attend plays, concerts and comedy shows.
Then MS changed those plans for both of us.
I worried he’d leave me.
As many times as my sweet man told me how much he loved me no matter what, I knew this was the “no matter what” part. Neither of us could have anticipated something this drastic.
He didn’t leave.
When I felt as though I was losing myself, he assured me I wasn’t losing him. When depression overwhelmed me or I struggled with something as ordinary as showering, he was there.
I eventually gave him a fitting role in my snowstorm.
My husband is my “snow blower.”
He refuses to let this snowflake fall.
Building My Snowball
Medicine helped, but I also needed people who understood what I was experiencing.
That’s when the snowflake comparison I’d once disliked began to mean something different.
Snowflakes packed together form a hard snowball, strong enough to break a window. Separately, they melt away, much as I did whenever I was left alone with my feelings.
I needed other snowflakes.
I found support among people living with MS. No two of us had identical symptoms or stories, but we shared an understanding that didn’t require constant explanation.
For years, I had focused on the woman I’d been before MS.
I missed her.
My body, my energy and my independence. I missed working, driving, and doing things without first calculating whether my body would cooperate.
But constantly measuring my present life against my old one kept me trapped between the two.
I had to find a way to start again.
Writing became part of that process. It gave me an outlet and a purpose, and it helped me move toward the stage of grief I’d resisted for so long: acceptance.
Acceptance doesn’t mean I’m grateful for MS.
I’m not.
It doesn’t mean I no longer grieve what I’ve lost.
I do.
For me, acceptance means learning to put away what I can’t do anymore long enough to recognize what I can do now. It means understanding that the woman I was before MS is part of me without demanding that I remain her forever.
When memories of my old life overwhelm me, I pack those feelings into a snowball and envision myself throwing it as far as I can.
Sometimes another one forms.
So I gather more snow.
I’ve learned that snowflakes don’t have to remain invisible, and they don’t have to melt alone. Packed together, we become something stronger.
I’m still learning to recognize this version of myself. My disease, my body, and my life is mine.
And after years of fighting acceptance, I’ve discovered that accepting the life I have doesn’t mean surrendering the person I am.
I’m no longer a melting snowflake.
I’m building my snowball.
Let it snow.
Let’s have a snowball fight!
About Debra Jo Myers
Debra Jo Myers is a writer and guest contributor to AudacityMagazine.com who lives with Primary Progressive Multiple Sclerosis (PPMS). Through her writing, she explores disability, acceptance, family, and the unexpected changes that reshape our lives. She is a wife, mother, and grandmother of nine who has found both an outlet and a renewed sense of purpose in writing.
Another audacious person. Read about Shameka.
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