1st March 2003
Shelley Peterman Schwarz
Real Living with Multiple Sclerosis
SIXTEEN YEARS AGO, I lost my ability to transfer independently. As you can well imagine, it was an emotionally difficult time for me. I became more dependent than ever on my husband, David. I'd planned to join him on an upcoming business trip to Seattle, but I wasn't sure I could manage the uncertainty of leaving the comforts (and the security) of our home.
David was willing to do whatever it took to have me along. He wasn't fazed by the fact that I'd rely on him for all the transfers. As far as he was concerned, our 18-year marriage (8 of them with MS) had weathered many challenges. What was one more?
Our plane trip to Seattle had only one difficult moment. Because we were late to our connecting flight, the plane was filled with passengers. Since I could no longer walk onto the plane, David had to lift me onto a narrow aisle chair. This special chair had two sets of straps that crisscrossed over the front of my upper body and another set that went over my lap. The airport personnel carried the chair onto the plane. Once inside, the seat belts were removed and David lifted me off the aisle chair and into a seat on the plane. I was humiliated that everybody could see. How depressing to have this indignity to deal with! I hated how MS was taking over every aspect of my life.
While David was at his meeting the first day, I planned to spend time with my old friend Sarajane. As we drove, Sarajane gave me a guided tour of the city. "Do you want to stop for lunch? I'll be glad to help you in and out of the car," Sarajane offered. But my inability to transfer was too new for me. I was embarrassed, sad, and had too much pride to give in and let my wonderful friend help me. I wasn't ready yet.
We spent the afternoon driving around in her car. We timed our return to the hotel to coincide with David's afternoon break. He was waiting at the hotel door when we drove up. I remember how embarrassing it was to be lifted in and out of the car in front of all those hotel patrons. After Sarajane and I said our goodbyes, David and I went up to our hotel room so he could help me into bed. After he left the room, I cried myself to sleep. I hated how MS was infringing on my right to live my life on my terms.
Back to the Great Northwest
Eight years later, we returned to Seattle on another business trip. What a change there was-in my attitude! I was still unable to transfer and, in fact, was more disabled than I was on our first trip. However, this trip I was going to take charge and enjoy myself. No more tears and temper tantrums. I wasn't going to let my limitations limit me.
I had learned to accept that: (1) everyone needs help at one time or another; (2) almost everyone is willing to help if asked; and (3) a smile and a lighthearted attitude go a long way in helping you and the people around you get through difficult and embarrassing moments.
In the years since our last trip, I also learned that traveling was more relaxing when I anticipated problems and found solutions before we left home. Before our second trip to Seattle, I ordered a booklet from Easter Seals called "Access Seattle" that told me a great deal about the community and its accessibility.
Remembering that first plane trip to Seattle, I had to laugh. Being carried on and off planes with or without an audience had become no big deal. When Sarajane and I met again, I was more adventurous than I had ever been. I'd learned that if I wanted to get out and have new adventures, I had to accept help from people.
On this visit, the doorman helped me into the car and stowed my scooter wheelchair in the trunk. When we arrived at the restaurant for lunch, Sarajane asked a young man in the parking lot to help her get the scooter out of her trunk and to help her get me out of the car. After lunch and a little window-shopping, we found another willing helper to get me back in the car and put the scooter in the trunk. Sarajane drove me back to the hotel, where the doorman assisted me out of the car.
Sarajane and I laughed about how much fun we had and how my attitude had changed. And David could enjoy his meeting without being distracted by my need for his help.
Sarajane and I parted company and I headed up to our hotel room, thinking David's meetings would be over; however, when I knocked on the door, he wasn't there. I had another idea. Perhaps the maid who was cleaning the room across the hall could help me into bed. So I asked. Fifteen minutes later, David returned from his meeting. Seeing me lying on the bed, he gave me a puzzled look that said, "How did you do that?"
The next day, I went to explore the neighborhood while David was at his meeting. A few blocks from the hotel, I hit a bump on the sidewalk and my right foot fell off the platform of my scooter. I couldn't get it back up myself, so I looked around until I saw someone I felt comfortable asking for help. A police officer that was waiting to cross the street gently lifted my leg back up.
As I headed to the popular tourist attraction Pioneer Square, I rolled down the sidewalk to the other end of the block to find there wasn't a curb cutaway that would allow me to cross the street. Eight years earlier I would have been angry because here was another barrier. But now I found myself asking, "What are my alternatives?" I looked for the cutest young guy around and asked him to help me from the curb into the crosswalk. He was darling and happy to help. As I headed for the curb cut on the other side of the street, I realized, once again, how liberating it is when I ask for help.
I'm truly grateful for the accommodations that have been made for people
with disabilities. But it's our attitudes about asking for and accepting
help from people that make a difference. Isn't it a small price to pay
to keep having new fun adventures, making new memories, and challenging
yourself to live a full life despite MS?
© 2003 Real Living with Multiple Sclerosis