December 1, 2003
Shelley Peterman Schwarz
Real Living with Multiple Sclerosis
WOW! IT WAS 1991 and I felt like I'd hit the big time as a writer! I'd written a story about being a parent with MS and, not only was my story filling five pages of the National Multiple Sclerosis Society magazine, Inside MS, but our family picture graced the cover! I was thrilled beyond words! But my family's reaction was less than enthusiastic, making me greatly disappointed and frustrated with them.
My husband Dave remarked, "You said our picture might be on the cover. You didn't say we'd be the cover!" Sixteen-year-old Jamie was furious. "Who told you that you could use this picture? This is so embarrassing. Don't you dare show this magazine to any of my friends." And 14-year-old Andrew glanced at the picture, then glanced back at me and asked, "Are my soccer shorts still in the dryer?"
In the 3 days after the magazine arrived, no one had read the article. It was still in the same place on the table. It hadn't moved.
I wondered how my family could give such little attention to what was, in my eyes, a gargantuan accomplishment. I had given up so much when MS entered my life. It was 11 years earlier that I'd been diagnosed with MS. At that time, my husband and I had just celebrated our 10-year anniversary, the kids were 5 and 3, and I was at the height of my career teaching deaf children in the local public school district. My life was perfect!
Then I began experiencing clumsy hands, which affected my ability to sign and finger spell in my job. My energy was gone and I couldn't run after my children like I used to. It didn't take the doctors long to pinpoint the cause of my seemingly minor but ever-present complaints: multiple sclerosis.
Within 2 years, I had to give up my teaching career. Over the next few years, the disease progressed relentlessly. I gave up driving, walking, and getting in or out of bed independently. Because I was so physically limited and had such minimal energy, the only thing I could do independently was type on a typewriter. I started keeping a journal where I poured out my worries, frustrations, and experiences living with MS. Much of what I wrote dealt with the children and what effects my illness might have on their childhood.
My first published piece came 6 years after I started writing, and when I wrote that cover story for Inside MS, I felt I'd come such a long way. I was dependent on others for so many of my daily needs. What were the chances of someone with my level of disability and no professional writing experience having a cover story in a national magazine? For some reason, though, my family didn't seem to recognize what a great moment this was for me.
With each passing day, my depression grew.
One afternoon, after crying until my eyes nearly puffed shut, it hit me! I was not going to let this disappointment pull me down any longer. I was going to take responsibility for my own happiness.
I called a local florist and ordered a basket of flowers to be delivered to my home. When the clerk asked if I wanted to enclose a card, I said yes. I dictated the following: "Congratulations! You're terrific! I'm proud of you. Love, Shelley." When I gave the clerk my name and address, she said, "You're sending flowers to yourself? What a great idea!"
Dave and the kids came home later that day. Jamie immediately noticed the beautiful bouquet of flowers sitting on the table and asked who had sent them. I told her to look at the card. With a quizzical look on her face, she replied, "I don't get it. You sent yourself flowers? Why?"
That afternoon Dave, Jamie, Andrew, and I all had a heart-to-heart talk,
and I told them about my disappointment with them. They apologized and
said they hadn't realized how important this article was to me. Even though
we all learned something that day, I think I'm the one who learned the
most valuable lesson: Be good to yourself. Treat yourself kindly. Tell
people what you want and need. And, above all, take responsibility for
your own happiness. And don't forget-keep the florist's number handy.
Copyright © 2003, Real Living with Multiple Sclerosis