The Courage to Give. Jackie Waldman
She explained it was against airline regulation to accept free gifts, so we agreed on $5 per bow. My hair accessory business, Bow Jangles, was born.
And it grew. My competitive nature, which drove my love for athletics, drove me in business, too. Before long, I had twenty-five employees and twenty-five sales reps across the country. We were in every major department store and hundreds of small boutiques. During the Gulf War, we made and sold thousands of red, white, and blue bows.
I made it a point to hire Russian immigrants—teachers, scientists, engineers— who needed to learn English before they could practice their professions in this country. We all worked together in one big room. To help them with their English, everyone spoke only English while working. But on their breaks, they were free to speak Russian. We always celebrated when one of these new Americans learned enough English to quit Bow Jangles and get back to their chosen career.
When I started my business, it was fun and more fun. But as it grew and became more successful, it also became more stressful. Before I knew it, I was getting to the office at 6:30 A.M. every morning in my attempt to run a growing business while maintaining quality family life.
It was around that time that I started having a strange tingling sensation around my waist. At first, I thought I was just imagining it. Then I attributed it to stress. Then I attributed it to some back surgery I had had years earlier.
But when the tingling progressed down my legs to my toes, and my legs became numb, I went to the doctor. After examining me, he told me to see a neurologist immediately.
The neurologist, a friend of ours, hospitalized me that day. I had MRIs of my upper and lower spine and brain. The next day, they did a spinal tap. I'll never forget lying on my stomach, with a needle in my spine, hearing one nurse whisper to another, “What are they testing for?”
The other nurse answered, “Multiple sclerosis.”
I lifted my head and asked, “Is that what ‘Jerry's Kids’ have?”
The nurses were embarrassed that I had overheard them, and they quickly reassured me it wasn't. But, at that point I knew this was serious.
On July 12, 1991—I'll never forget that day—the doctor walked into my room and told me and Steve that I had multiple sclerosis. Even the doctor seemed sad.
He explained that nerves have a coating around them made of myelin, kind of the way telephone wires are wrapped in insulation. When telephone insulation is torn, the message we hear in the phone sounds garbled. Similarly, when myelin is torn or destroyed, messages can't flow smoothly along the nerves. And that's what my problem was. The MRI of my brain showed scars where the myelin had been destroyed. That's why my legs weren't functioning. He suggested several doctors who specialized in MS.
Steve and I held each other and cried. We were so frightened. Through my tears, I told him how sorry I was. Through his tears, he told me to quit apologizing. He told me we'd get through this together.
We chose a doctor, and he came to visit that same day I will always remember his kind and gentle manner. After reassuring me I wasn't going to die, he told me that even though my legs were numb then, that didn't mean they would be numb forever.
He explained that MS is an autoimmune disease—meaning that the body attacks itself—that is unpredictable. Some people have an attack and return to normal. Some have an attack and are left with some damage. Others get steadily worse. Each person's MS is unique, depending on where the myelin is destroyed.
As the doctor explained it, our first priority was to halt this attack. We tried intravenous steroids first, but that didn't help. Then we tried chemotherapy. With that, some feeling returned to my legs. I was so excited. The doctor allowed me to go home and have the next two rounds of chemo at home with visiting nurses.
At home, I had to face my children, who were in middle school and high school at the time. I told each of them separately that I would not die from this and that it wasn't hereditary. I promised them nothing would change.
But of course, everything did change.
After I finished chemo and got my strength back, I assumed I would be fine. I tried to ignore the overwhelming fatigue I felt on a daily basis. I pushed myself forward, believing that if I just tried hard enough, I would beat this disease—even though I had read there was no known cure.
One day when Steve and the kids were gone, I got on the treadmill and fastwalked three miles. Sweat poured out of me triumphantly. I was so excited to be able to exercise so well again. I told myself I was feeling normal. Everything would be fine. But after I cooled down, I had to sleep for four hours.
Rabbis from our synagogue called and offered to come visit. I laughed and told them they didn't need to waste their time with me—they needed to spend time with someone who really needed them.
Looking back, I realize I was in complete denial—big time denial.
When I finally quit denying that I had a serious illness, I became very angry. Why me? Why was God punishing me? What had I done so wrong? Did I get this disease as payback for the fact that my life had gone so well? That things had come easily for me? How fair is this?
I asked these angry questions over and over and over. They went through my mind continuously. I wasn't really looking for any answers. I was just asking out of anger.
As part of my anger, I resented any happiness I saw around me. When Steve played the piano and the kids laughed and sang with him, it made me angry. When Steve came home, whistling while he cleaned the dinner dishes, and then helped the kids with homework after working all day, it made me angry. The more he did without ever complaining, the angrier I became.
How could they have fun? Didn't they know how much pain I was in? But as soon as those questions came into my mind, I would immediately feel guilty for wanting anything but happiness for the people I loved.
In 1992, because I wasn't able to work full-time anymore, I had to close my business and sell all the inventory.
I had ruined an absolutely perfect life.
Steve didn't bargain for this, I told myself over and over. Instead of wasting his time with me, he could be with an energetic, vibrant woman. Before I got sick, we loved to dance. But afterward, my legs were so weak I could barely walk without getting tired. If we did go out to a party, we never danced and we always left early. I kept thinking that he would be better off without me and that maybe I should just let him off the hook.
All day long, terrible thoughts ran through my mind. Why doesn't Steve care about the pain and turmoil I'm in? Why does he keep telling me he loves me and that my MS doesn't matter to him? What if I have to come down the aisle at my daughter's wedding in a wheelchair? What if my family is just pretending to still love me? When they were alone with their thoughts, did my children resent me?
I tried to get rid of these questions by looking everywhere for a cure for MS. I knew that cure was out there. It had to be. So I made it my full-time business to find it.
I tried Chinese herbs, acupuncture, chiropractic, and protein diets. I traveled to Israel to become part of a trial study with a new drug. I'll never forget Steve meeting the drug company representative at the airport in the middle of the night. He carried the medicine home in a special container filled with dry ice. Things looked good for a few weeks, but my body rejected the drug within a month.
Throughout everything—and no matter what I was feeling inside—I outwardly maintained a positive, cheery appearance. I made sure MS was not the focus in our home. The kids’ schoolwork, outside interests, and social calendars never suffered. When friends called, I was “fine.” When family called, I was “fine.” If people offered help, I didn't need it.
I was even “fine” for Steve. I knew he felt my pain and devastation. But I couldn't bring myself to talk openly about my feelings with him. I didn't want to feel his pain. I just couldn't face it. I had enough of my own.
I did have one dear friend, Dee, who understood me almost better than I understood myself. She had two rocking chairs on her front porch, and