An Open Letter to Friends and Family

by Shelley Peterman Schwarz

August 25, 1979 is the day my life changed forever. It was the day I was diagnosed with multiple sclerosis. Dave and I had been married for 10 years. We had two children—our daughter Jamie was 5; our son Andy was 3. I was 32 years old and relieved that there finally was a name for my list of minor but ever present complaints: my clumsy fingers, my inability to run fast, and the tingling up and down my spine.

A lot has happened since my diagnosis. The disease has left me with no use of my legs and dominant right arm. My weakened left hand can't even turn a doorknob or squeeze a tube of toothpaste.

Over the past sixteen years, I've learned a great deal about myself and have developed a philosophy that helps me cope with this disease. I've also learned to share my feelings with my friends and family and to tell them how they can best help me. The following letter expresses those thoughts and feelings.

Dear Family and Friends,

When I learned I had multiple sclerosis, I entered a new world, a world of never-ending change as symptoms flared up and then subsided. It was a world in which I had no control. I grieved for the loss of good health. I grieved for the dreams that would remain unfulfilled. I grieved because I was no longer like you. I had worries none of you could ever fathom.

Years ago Elisabeth Kubler-Ross identified five stages in the grieving process: denial/isolation, anger, bargaining, depression, and acceptance. With chronic illness, the grieving process took years because I grieved for each new loss or symptom. Take walking, for instance. I didn't lose my ability to walk overnight. It took years and I grieved for each new loss. I grieved when I could no longer walk the kids to school, when I couldn't walk from one end of the house to the other, from one room to another. I grieved when I could no longer walk a step, and I grieved "big time" when I couldn't even stand up. It was horrible. MS is like a nightmare that never ends.

I don't care how old you are or how major or minor your complaints. Adjusting to change takes time. The grieving process is real and has no timetable. Your patience and understanding go a long way toward showing me you care.

Since MS affects everyone differently, you can't compare my MS with anyone else's. Pain, fatigue, muscle spasms, and weakness can be debilitating; so can bladder/bowel balance, cognitive, vision, or mobility problems. In my case, for example, fatigue is a monumental problem. It's hard to describe the overwhelming and exhausting fatigue I can feel. It's like I moved furniture all day, carried a 100-pound backpack up the side of a mountain and rowed a boat across the ocean…and all I've done is gotten dressed.

I'm not exhausted all the time. But when that fatigue hits, it's like hitting a wall. There is no reserve. It's depressing to have no control over how tired I am regardless of how much sleep I've had. Sometimes I say no to your offers, like "let's take in a movie" because I don't want to let you down at the last minute. Thank you for understanding why I cancel or renege on plans.

MS also means that I've had to learn how to deal with doctors, pharmacists, and therapists, something I was totally unprepared to do. Learning new terminology and being subjected to lots of medical tests can be scary and unnerving. I like to have you go with me when I speak with healthcare professionals. I don't trust myself to hear and remember what's said. When you offer to take me to appointments, it makes me feel as if I'm not alone.

I know some of you feel uncomfortable or at loss for words when you see me. It's OK to say, "I heard about your illness and I don't know what to say." Others of you have told me, "I wanted to ask you how you were doing, but I didn't want to appear nosy." I never feel you're prying. Questions like, "How are you really feeling?," "What did the doctor say?," "How's the treatment going?," make me feel that you care.

But don't be surprised if I'm having a bad day and don't want to talk about this #%#&!^#% illness to you or anyone else. On the other hand, you might call innocently to tell me about a change in the soccer schedule or to reschedule a lunch date and a simple, "Hi! How are you?" will open a flood gate of emotion. Afterward, I'll feel horribly guilty for dumping on you, my poor unsuspecting family/friend. Can you see how this illness can play havoc with my emotional stability?

It's also OK to share: "My cousin has multiple sclerosis so I have a little understanding of what you're going through." But, please squelch the temptation to say, "I know how you feel." Trust me, you can never know how I feel.

Getting though each day is a challenge for many families but it's much more difficult when a parent has MS. When you offer help, it's like a blessing from heaven. Think what might be helpful to you if you were is the same position. Offer to take the kids for an afternoon or to take Dave's turn driving the car pool.

I know you mean well when you say, "Call me if you need something. Let me know how I can help." But when I'm not feeling well and don't know if I'll ever feel well again, it's hard to muster the energy to reach out and call you.

Shortly after my diagnosis, I remember you tried to shield me from certain events and activities. But I didn't want to be left out. Include me in your plans. It's OK to invite me to a bowling party, a golf outing, or a hoe-down with dancing. Let me decide whether or not I'll go.

In this life, we don't always understand why things happen the way they do. It's human nature to try to ask, "Why did this happen to me? What did I do to deserve this? What did I do wrong?" I didn't do anything wrong. Chronic illness isn't a punishment. It just happens. There isn't anyone to blame. It isn't anyone's fault.

I hope I've given you some insight into what it's like to live with multiple sclerosis and how you can help me. I'll close this letter by saying, I could not have made it this far if it hadn't been for you, my precious family and friends.

No matter how sad or despondent I was, no matter how many medical procedures I endured, no matter how much I complained, cried, or cursed, you didn't desert me. Your calls, notes, balloons, flowers, and dinners were only a part of what you gave me. You continued to include me, yet understood when I finked out. You called back again and again and again when I didn't return your calls. You listened to me rave and rant even when you had problems of your own.

And for all these reasons and more, I will be forever be grateful.

With all my love,

Shelley