1st Jan 2003
Shelley Peterman Schwarz
Real Living with Multiple Sclerosis
IT HAPPENED AGAIN TODAY. I received a call from someone who was just diagnosed with MS. This time, it was from Jenny, a 31year-old woman with three young children (ages 1, 3, and 5). This call touched my heart so deeply. When Jenny was a junior and senior in high school, she'd come once a week to help me with range-of-motion exercises. Her goal was to become a physical therapist. She'd never known anyone with MS until she met me.
When Jenny started coming to my house, my daughter Jamie was a freshman at the same school. While Jenny helped me exercise, she'd share her thoughts and feelings about her girlfriends, boyfriends, and parents. Through Jenny's storytelling, I went to the prom, took high school classes, and felt the pressures and frustrations of being a teenager. I always told Jenny that listening to her was like the movie previews of coming attractions. I knew I'd be a better, more relaxed mom because of what Jenny shared with me.
We kept in touch for years. She went to college, got married, and had a baby. Then, as often happens, we lost contact somehow. I was so grateful to hear Jenny's voice again, but was totally unprepared for her news. After brief pleasantries, she blurted out that she'd recently been diagnosed with MS and added, "I called you because I knew you'd make me feel better." Her words echoed in my ears and transported me back 23 years to the time of my diagnosis. I was 32, with a 3- and 5-year-old.
What could I say? What had I learned that could help Jenny? How could I offer her hope and encouragement for this huge new challenge in her life?
For most people with MS, I'm their worst nightmare. Jenny knows the severity of my disability. I cannot use my legs and dominant right hand and arm and have minimal use of my left hand. It must have taken great courage for Jenny to call me. My first thought for Jenny: It's unlikely that her MS will progress as quickly as mine. The wonderful new drugs on the market keep the disease from progressing. The ongoing research-much of it funded by the National Multiple Sclerosis Society-is getting us closer to solving the MS mystery. If she takes care of herself, Jenny has every chance to lead a happy, fulfilling life, with hopes and dreams for the future.
So what did I tell her? I searched for the right words and this is what I said.
Tips for the Newly Diagnosed
1. Put yourself first. You have to take care of YOU. If you don't, you won't have the strength and energy to take care of anyone else. Along with that, you have to give yourself permission to say no. I could see that this would be difficult for Jenny because she's always been a caregiver. Before being a stay-at-home mom, she was a registered nurse. When you have a chronic illness like MS, you have to pick and choose how to spend your time and save whatever energy you have.
2. Be open and honest with everyone, including your children. Explain things in terms they can understand. "Mommy's tired today; let's play some quiet games."
3. Ask family and friends for help. Don't expect friends and relatives to read your mind or guess what you're thinking. Tell people what you need and how they can help. Someday you'll pass along the kindness to someone else who's going through a difficult time. Don't feel guilty. People feel good when they can help someone else.
4. Focus on the positive things in your life. See a counselor (with or without your partner) whenever you feel overwhelmed. If dark thoughts keep you from being optimistic, if you're always complaining and don't feel you can "dump" on people any longer, talk to a counselor, psychologist, or a psychiatrist. They'll listen and help you with strategies for living. In addition to your MS, you may be dealing with depression. Medication may help even your moods. Ask your neurologist or the National Multiple Sclerosis Society for therapists who are experienced in counseling people living with chronic illness.
5. Be your own advocate when it comes to your health care. Today, more than ever, clinicians and health care professionals work with patients as partners. If you're confused, overwhelmed, or feel unprepared for this new role, ask someone you respect and trust to accompany you to your medical appointments. It's not easy making decisions about which treatment protocol to follow. Gather all your information and then make your decision. Trust your head and your heart to make the best decision for you and your situation.
If Jenny keeps those five points uppermost in her mind, I believe she'll have an easier time accepting the challenges ahead. One day when the phone rings and the caller tells Jenny, "I've just been diagnosed with MS," she may say, "Today is a very hopeful time for people with MS. Here are the five steps that helped me move forward in my life."
Mail your time- and energy-saving tips and ideas to: Shelley Peterman
Schwarz, c/o Real Living with Multiple Sclerosis, 1111 Bethlehem Pike,
P.O. Box 908, Springhouse, PA 194770908. You can also visit her Web site
© 2002 Real Living with Multiple Sclerosis