DONNA BOLDT
People With MS and the Courage to Give
Chapter 22: Don't Just Sit There, Do Something
MS HAS IN SOME WAYS BEEN A BLESSING. It has given me the blessing of establishing new relationships, taking control of my well-being, and sharing my story.
For many years my parents and I wondered why I was so forgetful and klutzy. We just assumed it was a way of life. We found out it was more than that. I have multiple sclerosis.
Growing up I was exposed to so many wonderful things. My parents took us all over North America, we skied, boated, hiked, biked; we were exposed to history, art, music. We used to camp in a tent in West Virginia for seven weeks each summer, I got to model with a well-known agency and to participate in various organizations and athletic programs. I was a very, very lucky kid. By the time I reached college I was a pretty good student, a hard worker, and a competing precision sharpshooter. Eventually I climbed to become the third-generation president of our family Chemical Distribution Company—Deeks & Company, Inc.
But although I led an active life, I was always klutzy. I had “mysterious” health problems, even as a small child. I would have bouts of pain in my legs and an inability to walk. My parents took me to every specialist in the state to
rule out all of the known diseases. No one could ever tell us what was wrong, but the symptoms would always go away over time. As an adult I became a nationally ranked competitive sharpshooter, so I was obviously steady enough most of the time, but then there were those times when I would knock over my wine glass at dinner, run my sweet husband off the road when we went running, drop things, or fall asleep whenever I sat for more than ten minutes. We’d just laugh and joke about all of my “weird klutzies,” and life went on.
But by October of 2000 warning bells were going off at every turn. We were no longer able to ignore the signs. Being clumsy and forgetful was one thing, but fighting vertigo and wanting to cry every time I had to face easy tasks such as putting on socks or unloading the dryer was quite another. So I headed to my GP, where I was treated for the vertigo. He gave me a prescription and told me to get more rest. My husband and I have five children between us, ranging in age from seven to twenty-five; we own two separate companies, have two homes in two states, in two time zones, and a dog. Rest was a foreign concept. With the medication, the vertigo cleared up quickly, so I thought I was okay.
Okay lasted about two weeks. The day after Thanksgiving my husband took me shopping in Chicago. We shopped like fools, carrying bags for hours, when suddenly my right hand went numb. We rushed to the car to put the bags away and tried to get my hand to wake up. Big problem: it didn’t. In fact it never did.
Back in Atlanta the following week I was determined to get some answers. I chose to go back to my GP, but this time I asked a million questions. I was tested for various things and was finally told perhaps I should consider seeing an endocrinologist. By now, of course, it was the peak of the holiday season and most doctors were working short weeks. There were no appointments available. Well I wasn’t about to be stopped. Being the creative and assertive person I am, I finally told one of those “Miss sorry-no-appointment-availables” that I would
be living in her waiting room until one was. Two days later Dr. Endocrinologist saw me. Of course he was in a hurry and wouldn’t listen to me. Sound familiar? He thought I was hypoglycemic and put me to the task of doing the four pricks a day test. For two weeks I was a human pin cushion, but of course the tests came back inconclusive, at which point he told me in his oh-so-sweet way that he didn’t think this was a medical issue he could deal with and suggested I go to a neurologist. Of course I just felt crazy. Couldn’t anyone tell me what was going on?
The following day I chose to park it at the local neurologist. This time it only took a few hours of “sitting in” for him to see me. He listened intently, tested me extensively, electrodes and all, and encouraged me to have an MRI, which I did.
The following day the doctor himself called from his cell phone to tell me that he thought I had demyelination of the central nervous system. He said he suspected multiple sclerosis. My first reaction was, “Is that the Jerry Lewis disease?” It’s not.
Okay, so now I had a name for what might be wrong, but I didn’t really know a thing about MS. I figured I had two choices: either ignore the doctor and live with the weird symptoms or read up on MS and find out what I could do about them. You guessed it. I chose the research route. I went to bookstores, searched the Internet, talked to medical professionals, my parents, a service dog trainer for folks with MS, a physical therapist—you name it, I did it. I wanted control. I wanted knowledge. I wanted to make my own choices.
With the help of family and friends, I found out all sorts of interesting things about MS. I discovered that weight training, stretching, and daily exercise would increase my strength, flexibility and muscle memory so I could potentially continue to walk and write even if I was going numb. I learned that I should be resting when I was tired, working and flying less, and lowering the stress in my life.
I learned that hot weather, heated pools, warm baths, and heavy clothing were not going to be my friends. And I discovered the Swank book and its MS diet of almost no saturated fat; no dairy; limited red meat; and a vitamin cocktail with evening primrose oil, acidophilus, and lecithin—all linked to the possibility of helping MS patients.
Now, what was I supposed to do with all this information? Give up my favorite foods? Take seventy pills a day when only eight are Rx? Force myself to go to the gym to work out by myself or with a trainer every stinking day? Wasn’t I supposed to be resting more? Hunh? Should I give up being “super mom” and the kind of company president who handles every detail almost to a fault?
You bet. I was determined to be in charge of my life by taking action, even if it meant making difficult choices. My husband called a family meeting and explained my condition, as we understood it, to our girls. Looking at their sweet, concerned faces was one of the hardest things we had to do, but we wanted to make it as unscary for them as possible.
In the weeks to come my husband and children came up with lists of things other people could do for me. They decided they didn’t care who cooked dinner, cleaned the house, washed their clothes, or mowed our lawn. They cared that I ate dinner with them, helped them choose which clean clothes to wear, helped them with projects, and played outside with them. They cared that in our very clean house I was still awake to read to them, pray for them, and kiss them goodnight.
Next I had to talk with my coworkers about the changes I would have to make in my work life. For starters, I would now be coming in around 7:15 A.M. and leaving by 3:00 P.M. so I could go to the gym and work out. No more twelve-hour days. I also had to delegate anything that was not critical for me to do personally. Being an overachiever and type A personality, which by the way seem to go hand in hand with MS in some of the research findings, all this delegating and letting
go made me feel out of control at first, but then things started to change. I found that I could plan breakfast or dinner meetings, just not both; when traveling I could always find a hotel with a fitness center so I could work out; and I could usually find restaurants that offered healthier “MS” choices. I began to understand that admitting to our limitations isn’t being weak or handicapped, it’s being honest.
I still take the prescribed oral drugs to help with the symptoms, inject myself with one of the treatments being used to slow the progression of the disease, take the vitamin cocktail, exercise daily, and eat pretty well—most days. I wear inserts when I am walking long distances, wear my braces if my legs seem to be dragging, and carry my cane with me when I am traveling. I feel like I am taking an active role in my physical health. And much of the time I feel alright.
But, I’m convinced that part of my well-being can be attributed to another life-changing choice I made. As my health kept deteriorating, the fact that I was adopted and didn’t know my medical history became more and more problematic. Up to that point I had never had any desire to find my biological parents—I have the greatest parents in the world and they chose me, so why would I?—but now it seemed that I might have to.
I knew I was adopted in Cincinnati, Ohio, so I called the adoption agencies listed in the Cincinnati phone book and discovered that I’d been adopted through the Children’s Methodist home, which now had a different name. I called and spoke with an intern there, giving her my date of birth and adopted parents’ names. I was lucky. Turns out the state of Ohio started sealing adoption records two months after I was born, so I made it just under the wire. Within a few minutes the intern was able to give me my biological mother’s name and address as of the time of my birth, along with her background information—her parents’ names, siblings’ names, ages, and medical history.
From there I contacted the birth records division for the state of Ohio and gave them the information, and they simply pulled my birth certificate and adoption certificate. The whole thing took about five hours. Incredible.
Okay, now what? I knew my birth mother’s name, but I didn’t want to just storm into someone’s life and make a mess. It was the Friday before Memorial Day, so I decided just to hold tight. About four months later I started thinking about contacting my birth mother again. But I really wanted to do it right, so I called the intern and asked her for the phone numbers of groups that makes the probing phone calls for you. As luck would have it the caller reached my biological mom easily, and my mom assured her that it was okay; she had already told everyone in her life about there being a “me” out there somewhere.
So, after all those years I finally met my birth mother. I must admit it was pretty cool to see where my looks come from. At that point I still hadn’t been diagnosed definitively, but I was pretty sure I had MS; ironically, her husband (not my biological father) also had MS, so she had facts and pointers for me.
These days I go around speaking to families who are considering adoption or have just adopted. I encourage open adoption, first and foremost for medical reasons. I can’t tell you how many times I had to fill out medical forms and felt so embarrassed because I couldn’t answer any of the questions about family medical history. People shouldn’t have to go through that. That’s why I encourage people not to wait until they need the information as I did.
As I speak with parents, I also let them know what it was like for me growing up as an adopted child. I say to them, “Can you imagine looking in the mirror and wondering why you look like you do? Or if you are ever going to have gray hair and when? Or where some special talent came from? I love my parents with all my heart, but knowing where I come from has been pretty awesome.
I encourage those of you faced with MS to have hope. Do something. Don’t
sit back and wait for this condition to take you. I thank God I took action. By seeking medical history and information, I have been able to get the best medical treatments available and have the privilege of making a difference in the lives of other adopted children. You see, MS can be a good thing.
