Multiple sclerosis shows cruelty, mercy
Clear liquid seeped into the syringe as I pulled back the plunger and – tap tap – flicked the plastic tube with my finger.
Gathering loose skin between my thumb and forefinger, I chose a spot next to the permanent hole where the needle had struck too many times before.
I held my breath and – stab – planted the inch-long needle in my mother’s shoulder. I cringed. I hated needles.
Slowly, steadily, I pushed the plunger with my thumb. Slowly, steadily I watched the clear liquid disappear.
I was 15. It wasn’t always that way.
The latest medication on the market for my mother’s disease had to be injected daily – and it had no sympathy for needle-shy 15-year-olds.
My mother was diagnosed in 1986 – the year I was born – with Multiple Sclerosis.
Slowly, the disease ate away at her nerves. Her brain stopped hearing messages she sent.
She tried to hide it from me, but always I felt her pain.
I was 4. Tying bows in my hair, she cried. She needed my help. Her fiery spirit chastised her tears and condemned her ineptitude.
I was 5. Playing Tchaikovsky on the piano, she stopped. She had lost all feeling in her left arm.
I was 6, and the sounds of my mother’s music again filled the house. She struggled with the scales. But again, I heard Tchaikovsky. She had learned the keys with blind hands.
I was 7, and she taught me to sing passion on a violin. As I screeched away on that poor instrument, she taught me perseverance. She taught me patience. She taught me to channel frustration into music, and turn it into something beautiful.
And always I felt her pain – as if we still shared one body. I was her child born of MS.
MS is a progressive disease. There is no cure, no set path to destruction.
About 400,000 people in the U.S. are affected with it, twice as many women as men – according to the National Multiple Sclerosis Society. But very few people actually know what the disease is – and some even deny its existence – because MS mimics so many other auto-immune diseases. Maybe that’s why it took years for doctors to explain my mother’s symptoms.
When I was 10, my mother’s legs stopped listening to her. Muscle spasms shot through her legs constantly, and sometimes she just couldn’t get them to move. But she was proud, and she hated asking for help. I was always there, though, holding her hand when we walked, asking her to lean on my shoulder.
We had nightmares of wheelchairs, the two of us, but on she walked.
MS is so unpredictable – it rises from a slumber and strikes in what doctors call an exacerbation, leaving victims blind, numb, or even paralyzed. It was hard to understand as a child, why so often my mother and I switched roles of caretaker. It was her disease that dictated our roles.
So far, MS has spared my mother her life.
Now, 22 years after her diagnosis, still she walks. Stiffly, painfully, but she walks.
Now she gives herself the injections, using a do-it-yourself syringe.
She fends off the progression of her disease by pushing against it daily. She fights the pain, the fatigue, the stiffness, the frustration, every day when she rises out of bed after a sleepless night.
When the kids – my brother, sister and I – were home, she avoided the reality of her disease and focused on us. Now that we are gone, she buries herself in odd projects – writing more than 100 songs, painting murals, carving and melding stained glass, sewing curtains and sofa covers and her latest venture, making and selling jewelry.
She is only 57. Her disease continues to attack her body. And in the past year, it has begun poisoning her cognition.
Sometimes she cries like she did when she couldn’t tie the bows in my hair. I cry too. I always feel her pain.
She says she is weak, incompetent and useless. She has trouble with the simplest of tasks, and she cannot understand, for the life of her, why.
But she is so strong. If only she saw her strength in the mirror, instead of her skinny, stiff legs, her foreign left arm, her belly bloated from all the medications in her system.
MS is a terrifying disease. My mother is evidence of its cruelty, but also of its mercy. I don’t want to submit her to a wheelchair, and I don’t want to stop hearing her music.
Please, join us in our fight against the disease. On March 28, there is an MS Walk in Watkinsville at the Oconee Veterans Park. Our community has met only 25 percent of its goal to raise $70,000.
We can’t meet that goal in the next 10 days without your help. The proceeds go to the National Multiple Sclerosis Society, which helps fund research for a cure. So please – donate, volunteer or sign up for the walk today on walkms.org.
- Hayley Peterson is the associate news editor for The Red & Black.

