From Diagnosis to Acceptance: My Journey
by Shelley Peterman Schwarz
Learning to live with a chronic illness like multiple sclerosis has been the hardest challenge of my life. I didn't have any role models. And, because I had the chronic progressive form of MS, I was "different" than those who had the more common remitting-relapsing MS.
The road to accepting my disability was long and winding. My journey began the day I received the diagnosis. Over the next few months, I struggled to accept that first loss—the loss of good health and the realization that at 32, I would be faced with problems most people don't deal with until they are 60, 70, or 80 years-old.
My losses continued in an unrelenting sequence. Slowly, day after day, month after month, year after year my abilities slipped away. I grieved each new loss. Whether it was because I lost my ability to comb and braid my daughter's hair or because I no longer felt strong enough to drive the car, I grieved. It didn't matter if they were big losses or little losses. It was scary, sad, and depressing.
I tried everything medically, nutritionally, mentally, and physically to alter the course of the disease. But nothing helped. I'd finish adjusting to one set of problems and within days be trying to adjust to another set. I felt like I was playing a game with no rules. It was no wonder I was depressed.
For 10 years, there was not one stable period. I needed help with everything. I could no longer dress myself or transfer from the bed to my wheelchair. I couldn't even turn over in bed. I realized that I was more afraid of living than I was of dying and if I wanted to live and be emotionally strong, I had to confront those horrible thoughts that were robbing me of today.
I had to rise above the emotional pain and scary thoughts and replace them with something else. I had to keep a positive, hopeful, attitude if I wanted to survive. To do that, I had to take care of myself. I had to make each day count. I had to learn to laugh again.
Taking Care of Myself
One thing that helped me adjust was reaching out to relatives and friends and sharing with them what I was going through. They responded with love and tried to be supportive. They thanked me for telling them about my illness because they were afraid to bring it up. I tried not to let it be the ONLY thing we talked about. I wanted and needed to know what was going on in their lives too.
When I faced a particularly difficult transition, like when I retired from work or when I needed a wheelchair, I saw a psychologist. Some sessions all I did was cry, but at least I wasn't always "dumping" on my family and friends.
I learned the art of compromise. I felt by compromising I could still maintain some control. Little compromises, like ordering French fried shrimp instead of chicken, meant I could eat with my fingers and didn't need to have someone cut-up my food. Bigger compromises, like wearing an ankle-foot brace, meant wearing ugly, clunky, orthopedic shoes. However, I walked better and didn't stumble.
I also did nice things for myself. One time when I was feeling sad and ignored, I sent myself flowers. I even enclosed a card that said, You're terrific. I love you. I signed it, Your best friend, Shelley.
It was one of the many times I took responsibility for my own happiness.
Make Each Day Count
It's always been an important part of my life that I be a productive, contributing member of society. My self-worth, I realized, was often tied to what I did for other people. It was difficult to find ways do things for other people when I was having trouble doing things for myself.
Often, all I could do was offer a listening ear. My family and friends told me it was a priceless gift. I learned that not everyone has the time (or interest) to listen and it was something I could do.
To do "my share," I let school, community and temple leaders know that I was available to make phone calls. Whether it was calling parents to tell them the soccer game was canceled or calling caterers for a political fundraiser, I felt I was doing something to help others.
Getting things done that I wanted done was always a problem because my family was already busy doing household jobs I could no longer do. So I kept a "To Do" list handy, (mending, putting photos in the album, going through the linen closet, etc.) Whenever I had a little energy or a friend was over to give me a hand, I'd tackle one of the tasks on my list. It felt good to accomplish something.
Lighten Up With Laughter
There is NOTHING funny about having a chronic illness like MS. But, I believe that keeping laughter in your life makes the journey easier. Funny situations and circumstances are all around us. Here are a few of my favorites...
When our son Andy was in fourth grade, he made me something in art class. The day he brought it home he excitedly rummaged through his backpack until he found a long piece of paper. Holding it up over his head, with arms widely spread apart, he held up a banner that read, "KISS THE CRIPPLED." I started laughing. I laughed so hard tears rolled down my cheeks.
When I finally composed myself, I learned how this "bumper sticker for the wheelchair" came about. It seems the assignment was to make a sign or banner. When Andy asked his teacher how to spell "crippled" she asked why. He told her he was making something for his mom. His teacher tried to discourage him because she thought that might hurt his mom's feelings. He told her no, it wouldn't make her feel bad. He was sure it would make her laugh.
That wonderful banner hung on the wall in our kitchen. We laughed and laughed many times as we told family and friends the story.
Our whole family will not forget the time I "rested" on the kitchen floor. The children were helping me make lunch, when I lost my balance and gently fell to the floor. I tried to get up, but even with help from them, I couldn't.
David had just gone on a couple of errands and we knew he'd be back shortly. The kids and I decided that I should just stay on the floor until he got back. Jamie was worried that I would get cold lying on the floor so she got me a blanket and pillow. Andy brought me a magazine to read. When David got home, the kids were sitting at the table eating lunch and I was on the floor with the blanket and pillow, reading a magazine. I still laugh when I think of the look on David's face as he came through the door.
And sometimes I'm the one who sets up or instigates the humorous situation. My favorite prank was the time my 10-year-old daughter, Jamie helped me bake a turkey. After preparing the turkey and putting it in the oven, Jamie went out to play. I told her to be back by 4:00 so we could finish getting dinner ready.
As soon as Jamie left the house, my husband Dave took the turkey out of the oven and carried it down to a second oven we had in the basement. Then, Andy and I took a Cornish hen I had "hidden" in the refrigerator and put it in the oven.
When Jamie returned, I asked her to check the turkey and see how it was doing... The expression on her face was priceless!
It is NOT easy living with MS. I've been angry, frustrated and depressed and have grieved for losses large and small. Yet, amidst the tears, trials and tribulations I've come to the realization that my self-worth and self-esteem is not contingent on my physical condition. It's how I choose to face the challenges in my life that counts. I think all of us owe it to ourselves to find a road that leads to happiness and hope my thoughts will make your journey a little easier.