NICOLE FOULIARD
People With MS and the Courage to Give
Chapter 21: Normalcy Is What You Make It
THERE IS NOTHING WE CAN’T DO. We might do it a little slower, we might do it a little differently, but we can do it.
One morning in 1989, I woke up numb from my mid-thigh to my waist. I didn’t think too much about it since it was just a tingling feeling. I have a lot of skin allergies, so I thought that’s what it probably was. Except that the numbness was spreading.
A few days later I was really uncomfortable, so I drove to my family’s home in Mesa—about a hundred miles away. I was exhausted so I fell asleep on my Mom’s couch. When I woke up I was completely paralyzed from the neck down and could only lift my fingertips and my feet. I was so scared. My dad tried to sit me up on the couch, but I was like a rag doll and just slid off.
Miraculously, as fast as the paralysis came, it started going away. Still thinking it was probably just a really bad allergy attack, I decided to head back to school. But about thirty minutes into the drive, I didn’t feel safe. Fortunately my grandparents lived between Mesa and Tucson, so I stopped at their house. My grandmother thought it was a pinched nerve in my back. She gave me a muscle relaxant and I went to sleep. Several hours later I woke up feeling much better and drove the rest of the way home.
The next day I went to the medical center at the University of Arizona for an examination. The doctor said I needed to see a neurologist and made a few calls, and within two and a half hours I was in a neurologist’s office. Of course, I was freaking out. I figured I had a brain tumor or something.
After an MRI the doctor called and suggested I come in and bring my mother with me. I hung up the phone sure that I was dying.
He sat us down and told us that my symptoms were consistent with multiple sclerosis. I didn’t really know what multiple sclerosis was, but of course I started crying. He explained that this was what is called an exacerbation—a bad one that would probably last four to six weeks. He said I would probably get better after that and might even go into remission for fifteen to twenty years but that eventually I would come out of remission and the disease would just slowly progress for the rest of my life. I didn’t know any better so I believed him. Thirteen years later I’m still waiting for the remission.
I was a musical theater major at the time, and I remember saying to my mother, “I’m never going to dance again.” She laughed and said, “You didn’t dance to start with!” At least she made me laugh.
My mom was right; I was a terrible dancer, which makes more sense in hindsight. My terrible sense of rhythm and the fact that I was always breaking bones had to do with my instability, my MS.
During my first year, I lived on and off crutches and in and out of a wheelchair, waiting for the twenty years of remission to set in. I dropped out of college with only a semester until graduation. My mother drove to my house every day to help me with basic needs such as grocery shopping, cleaning, and doctor’s visits and to get me out of the house.
Although I had pretty much dropped out of life, I had short periods of normalcy. During one of those periods, I got pregnant, but my partner split. Then
by some grace, I did go into remission for a while. Life was good. That’s when I realized that no matter how much chaos my life might be in I was the only one who could control my destiny.
My daughter, Alex, was born in June of 1991. When she was sixteen months old, the MS returned with a vengeance. I lost my sight, which was by far the scariest thing that’s happened so far, and we had to move back in with my parents. I began to wonder if having a child wasn’t a huge mistake.
It took some time, but I began to recognize even the smallest accomplishments as success. I could see color, so I bought Alex all bright colored clothing so I wouldn’t lose her while walking her to daycare. My mother made me cook dinner one night a week, so I cooked Mexican food because it has lots of color. I learned to read Braille and listened to books on tape without falling asleep. I learned how to ride buses.
The whole situation was hard on everyone around me, and I knew it. My mother was tired of changing diapers, my twelve-year-old sister was sick of sharing a room with Alex and me, my brother was tired of babysitting. My other sister was sick of having to “help your sister” with even the easiest of tasks, like making sure all the shampoo was out of my hair. My grandmother cried a lot, and my grandfather couldn’t even look at me, let alone talk to me.
It took about nine months for everyone to adjust. Then, not even two months later and only when I finally accepted my blindness did my sight start to slowly return! Ah, the beauties of living with a disease with its own agenda.
When I could see well enough to manipulate a computer screen, I returned to school, where I met Paul, my journalism professor. From the start he had nothing but faith in me. He didn’t know what baggage I had and he didn’t feel sorry for me. He just loved me for who I am. Paul once said that with me he could dream with his eyes open.
Shortly after he proposed, my grandmother was diagnosed with terminal cancer, so we shortened our engagement to six weeks to be sure she’d be there for the wedding. With the stress of my grandmother’s illness and a wedding to plan, my sight and mobility started to deteriorate again. In a desperate measure of denial I tried to do extraordinary things. My vision dimming, I not only painted my kitchen table but stenciled it, too. Then I made Alex a quilt by hand. When I look at it today, I see that it’s rather awful, but she treasures it and thinks it’s great.
On our honeymoon, Paul and I decided another pregnancy would be good for me, so now we have Brett. What luck that was! Brett keeps me mobile and gives me all the exercise I could ever want.
In those days I was so determined to prove that I was still “normal,” but now I think I’ve learned that normalcy is what you make it. Having MS has taught me how to appreciate what I can do. It has taught me how to ask for help when I need it and that asking for help doesn’t mean I’m inadequate. Having MS has made me pick and choose what I do and to be deliberate in my actions. Some days I can make it up the stairs to kiss Alex and Brett goodnight. Some days, more often than not, they come downstairs to me. But that’s not what really matters. After almost thirteen years of battling with and learning how to live with MS, I have learned that having MS does not define who I am.
In 2001, I was named Central New England National MS Society Mother of the Year. Turns out my daughter, Alex, had secretly submitted the application. When I saw what she wrote, I knew that everything I’d been through was worth it.
1. List ways in which this candidate participates in the lives of their children.
Cub Scouts, Girl Scouts, Softball, Hockey, Cheerleading
2. List family activities or hobbies which the candidate participates in with their children
Plays Nintendo 64 with us, cheers for us at all sporting events, reads books to us, plays board games, and makes up funny stories and jokes when we are not feeling good.
3. Show from candidate’s children’s point of view, why their parent should be named MS Mother of the Year
Because she is thoughtful, caring, trusting, loving, and kind and even though she has MS she is the greatest mom ever!
4. Are there any additional facts or stories which you feel are relevant as to why they should be chosen as MS Mother of the Year?
My mom has been blind, in and out of a wheelchair, on and off crutches and she has always loved me and has never stopped taking care of me.
I never would have believed that thirteen years into my life with MS I would be a wife, the mother of two great kids, a law student, a political activist, and a volunteer in my community. How grateful I am for all of it, but especially for Paul, Alex, and Brett, who believe in me so much and make me dream every day, who make me feel like there is nothing I can’t do. I might do it a little slower, I might do it a little differently, but I can do it.
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