CAROLE BISKAR
(Photo by Lifetouch Photographs)
People With MS and the Courage to Give
Chapter 16: You Must Live Your Life Anyway!
SOMEONE ONCE SAID THAT living with MS is like living with a terrorist. You never know when it will attack. That is probably true. But you can prepare. Get information, and be proactive about taking care of the symptoms. Find a neurologist you respect and who will take the time to answer your questions. There are many advances in MS treat-ments—more now than ever before because we know so much more than before. Take small steps or big ones, but realize it is your journey. You may need to get rid of what you have been planning in order to get on with what is waiting for you—or maybe not. Even with MS, be determined to live your life.
My English grandparents were married for over fifty years when my grandma passed away. It was the first Christmas my grandfather would be alone, so I telephoned him and asked if he would like to come spend it with my family. Fortunately he was able to make the trip. I asked him to tell me about the holiday traditions he and grandma had shared so that I might recreate the kind of Christmas he had shared with her. It seemed like every day he sent names of products and recipes that I’d never heard of. My friends and I were driving all over the Portland area trying to find just the right English toffees, recipes for French onion soup—cooked with just a little sherry—all for Christmas Eve, and
ingredients for hot toddies, which I had never made before. I found the steak and kidney pie for Christmas breakfast, the special port wine from England, and I decorated the house with what I had hoped would bring back good memories for him.
All went very well on Christmas Eve. On Christmas morning, my parents and grandpa, my own family, and I sat around a large table looking at these rather unusual steak and kidney pies, the special port wine and various other “delicacies.” My father looked up from this breakfast and said, “Dad, I don’t remember doing any of this for Christmas. My grandpa held my hand, winked at me, and said, “Oh no, Grandma would have never allowed any of this. This is the way I always wanted Christmas to be.”
That’s what it was like for me with MS. After my diagnosis I needed to redefine who I was and create a new life with MS—so that when I look back I will say it was the way I always wanted it to be.
Joseph Campbell, one of my favorite authors, wrote, “We must get rid of what we have been planning so we can get on with what is waiting for us.” As synchronicity would have it, I read this right before the telephone call that confirmed my MS diagnosis. I had lost a great deal of vision in my right eye, and after a short run I found most of my right side was numb. It came and went. On morning walks or runs with my husband I had tripped and fallen on a few occasions. We laughed a bit about it, almost nervous laughter, because deep inside we both knew something was wrong. I would close my bad eye when I was working on the computer or writing. But I hid it from people as much as I could.
As a first step, and what I had hoped was my last step, I went to my ophthalmologist for an eye exam. He and his two assistants kept looking at each other, scribbling notes and not really answering me. I knew something was up. At the end of the exam he told me that he couldn’t correct the poor vision in
my right eye; he ordered one more test and said he would call me. The next morning at work he phoned early and asked to get the name of my family doctor. He told me he would call her and make an appointment for me so I could get in as soon as possible. It was unsettling. I asked him what he thought it might mean. He said, “It could be one of three things: a stroke, a brain tumor, or multiple sclerosis.”
I asked, “Do I get a fourth choice?” In his mind, there wasn’t one.
My family doctor took me in right away. After asking me a few questions, he encouraged me to see a neurologist—again, right away. The neurologist ordered two MRIs and took my spinal fluid and a case history. His initial thought was that I had MS, and the tests confirmed it.
At that point in my life, I had known only one person with MS. Eighteen years ago, Judy had died rather young of complications related to this disease. I saw myself as being handed a death sentence. I was terrified.
I quilt. I choose my fabrics carefully, the patterns are coordinated, but MS added a new fabric to my quilt, one that I hadn’t chosen, and initially it didn’t look like it belonged. My design had changed. My journey began. I was now on a very different path than the one I had planned, but heeding Joseph Campbell’s words, I spent time trying to accept and understand what was waiting for me. How would I deal with this? I didn’t really know—there was no manual, no instructions, no way to get an A on this assignment.
What I did know was that when I was diagnosed with MS the diagram of who I was immediately changed. I am a wife, mother, daughter, redhead, quilter, traveler, friend, adjunct college professor, elementary principal, writer, runner, dog lover, but suddenly MS became the dominant feature of my identity. It really overshadowed everything else. I knew I basically had a choice: I could be a happy person with MS or an unhappy person with MS. I didn’t want to live a
life of fear and doubt. I believe that fear and doubt stop many of us from fully being what we are capable of. They don’t leave much room for joy, compassion, hope, or personal growth. And that was what I wanted—to be genuinely happy and contribute to my family and work.
To start, I wrote down everything that I needed to do to erase my fear and doubt. I learned as much as I could about the disease. I visited MS chat lines and the FDA Website, checked out library books, and sent for pamphlets. I became friends with a woman who also had MS. She was positive and helpful and became a role model for me. My MS circle grew smaller. I learned to accept support and encouragement from others and to ask for help, which was hard at first.
As the information increased, the fear lessened. I had an excellent neurologist who helped me make some decisions. I learned about the ABCR treatments, chose the suggested treatment, and began injecting immediately. Staying healthy also meant getting rest—I need a good eight hours, and my exercise now includes more stretches. MS is now a part of my life, but not all of it. It is just one more checkmark on the list of who I am.
In the beginning, the journey was anything but easy. It took a while to realize that the real suffering came from always wishing I didn’t have MS. I was scared, sad, and depressed. Up to this point, I had always defined myself by what I accomplished. People looked to me to have answers, to be competent, and to know what I was doing. And I was very afraid—afraid that if I couldn’t handle this, maybe I was a fake and wasn’t really very good at handling anything. People came to me for support—would they quit coming? Folks asked me for help. Would they stop asking? My parents had always been able to count on me, and now I would worry them. I was liked and loved in part because I was competent and fun to be with. Would people quit liking and loving me? My son looked at me with admiration—would it change to pity?
This disease knocked me off my feet. At a particularly low point I visited my minister, not really sure what I wanted to talk about. I told him of my fears of simply not being good enough any longer and that I was even more afraid of allowing others to see my fear. Sometimes I would park my car on the side of the road and just start crying. I kept makeup in my car so no one would know. I didn’t recognize the fears, or even label them.
I also told my minister all of the things I was going to do to “beat this thing.” I shared my strategies for my attack. I wanted to be the best MS patient. I told him I wanted to be like the gal on Oprah, you know, the woman who has had a hard time, horrible obstacles, and everyone says that she still continued on. No one saw her cry; she never complained, lost a day of work, etc., etc. I want to be that perfect person with this disease. I wanted the A.
He looked at me and said, “Carole, you do not need to be the poster child for MS. You do not need to be or do anything else than what Carole can do. What you have inside is enough—it is more than enough, it is all you need.” And finally I breathed a sigh of relief. What he said resonated with me.
There is no magic formula. It looks a little different with each person. I began to look inside for support as diligently as I had looked outside. I realized that I had started to doubt myself, and his words reminded me of my own strength. I had forgotten that. Or maybe I never really understood it in the first place.
Business consultant and author William Bridges writes about changes and transition. He believes, and I agree, that we can’t have successful beginnings without good endings. I couldn’t begin this life with MS until I began the difficult process of saying goodbye to some things that were me.
The surprise came when I realized that some of the changes felt even better.
I realized, for instance, that since my diagnosis I had had experiences that I simply wouldn’t have had before MS. I have had the opportunity to feel a great
deal of human kindness, understanding, and compassion, but not pity. Some days I may only garden for forty-five minutes instead of five hours, but it’s different now. I enjoy every tiny minute. A parent, one of my PTA officers, came into my office one day and told me that I was her inspiration, because I was always happy, brave, and getting things done at school. I was still enjoying the children and planning things for the school. I appreciated that so much more now than I would have before.
But I also told her that I do cry sometimes, that I have my hard days and days when it isn’t easy and I don’t have courage. I also told her that everyone has some kind of demon at some time in their life, and we all struggle. I suddenly realized that I didn’t want to be that woman on Oprah. That would have been a lie for me. I wanted her to know that. All of a sudden, being perfect didn’t seem that important. Being genuine was.
There have been paradoxes with MS. I’ve slowed down, but I see more. I am not as hard on myself. When I get tired, I rest. Once recently I needed to cut a shopping trip short with my sixteen-year-old son after we had been to only three stores. He put his arm around me, gave me a kiss and said, “Mom, I hate to say it, but there are some good things about you having MS. I didn’t want to spend all day here. That’s what you usually do.” He held my hand all the way to the car, not saying anything else.
Shortly after my diagnosis a teacher came by my office and said, “In our new school we will make sure the door is large enough in case you ever need a wheelchair. You will always be our principal.” I was so afraid they wouldn’t want me with this disease. Their vote of confidence was overwhelming.
I have learned that some days I may need to change plans. When I invite friends for dinner I let them know they might get a nice Brazilian dinner or maybe pizza, depending on how I am doing. And people understand. My husband’s roles
have changed, too. When I was first diagnosed he said, “Carole, it is no problem. I am here. I will always carry you.” And he has, in so many ways. He has only had one request of me—to keep my sense of humor—and I’ve tried.
Sometimes someone with MS will come to my office who, for whatever reason, has been keeping it very private. It is nice to know they want to talk with me. Maybe I am still serving people, but in a different way. I’d like to think so. I have made small day-to-day changes. These days I use a number system with people closest to me, a kind of code that saves a lot of talk about my health. When they ask me how I am, I give them a number from 1 to 10. If I say 1, my secretaries screen my calls and step in a little more than usual. I actually think I’m a much better principal now; I can’t chair so many committees, so my staff has stepped forward. We are forging a model of shared leadership, which is the culture I always wanted to create.
This disease isn’t easy. It doesn’t play fair; it is a change, and it’s hard to understand. There is never a day that I want to have MS. But I am continuing to do the things I love, with the people I love. I am looking forward to so many things in life. The present seems so much sweeter. My last MRI showed one less lesion, and another is considerably smaller than it was a year ago. Is it because I’m using one of the ABCR treatments? I don’t know for certain. But my experience certainly supports the research that I had read in the beginning—that getting on treatment early can make a difference.
I have a drinking glass with a white line painted exactly around the middle. Above the white line is the word optimisto, below the white line is written pessimisto. My wish for you is that your cup is always filled above the white line. There are more reasons to be optimistic about MS treatment and what we know about the disease than ever before.
My grandpa chose to redesign his Christmas. Remember, you have choices, too.
