ReaderEssay My body talks to me. Unfortunately, it often doesn’t say what I want to hear. Multiple sclerosis doesn’t care that I have two children who want to be chauffeured, fed and helped with homework. When this chronic neurological disease decides to play havoc with my body there is no negotiating.
I was diagnosed with MS at a time when my children required a high level of parental involvement: 10 months and 3 years old. The diagnosis came after my imagination had run the gamut of both familiar and rare fatal diseases. At that point I was just relieved that my nonexistent medical degree failed me and that I was going to be around to enjoy my family. I didn’t stop to think how a chronic disease would affect my goals of being an involved mother, storyteller and an equal partner to my husband. I was resolved that I, not MS, would call the shots. I wasn’t going to let it change my life. Since this was a unilateral decision, it didn’t last for long.
Like all moms of young children, I spent my days driving, caring, managing and playing with my adorable twosome. Like all moms, I was also tired all the time. The difference was that with the fatigue came the worsening of my MS symptoms. When I entered the hospital for treatment, I realized this was a disease that couldn’t be ignored or controlled. It was more realistic to figure out how to live with it. Who would take my place in my absence? How were my husband and I going to help our sons deal with my illness? How could I be a good mother and try to stay ahead of the fatigue that not only comes with parenthood, but also with MS? Was it possible to keep this disease from dictating our whole existence?
Thus began a journey of living with MS as part of our family reality, without letting it take over entirely. Due to the current progressive nature of my MS, there are times when creative problem solving has helped us maintain a degree of normalcy. With the help of a supportive husband, wonderful friends and lots of trial and error, we make our way through, one day at a time.
As I look back at this 11-year journey, I can identify the factors that have played a major role in my ability to parent my children as best I can within my limitations. These factors are:
Positive mental attitude
This didn’t come naturally. I grew up in a family of pessimists who would throw up their arms in the face of adversity. Luckily, my husband didn’t. He constantly reminds me, "If you can do something about it, then do it. If you can’t, then there is no point to worry. Remember PMA." So, when my MS acts up my mantra becomes, "It’s going to be all right." Then I am able to start dealing with the new symptoms through creative problem solving, flexibility and a sense of humor.
My problem-solving skills have become well developed over the years. A bad MS day has curtailed plans for an outdoor picnic, but it didn’t stop an indoor one complete with a blanket, visiting teddy bears, bear puppets made out of paper plates and Teddy Grahams (based on the story "A Teddy Bear Picnic"). A scheduled restaurant lunch turned into ordering pizza (special, because we never did this for lunch before). Cancelled outings have turned into cooking or craft sessions or an afternoon of watching videos and eating microwave popcorn in my bed. Sometimes plans just have to be deferred, but I always make sure that they do happen, even it’s a two-week delay. Yes, there is disappointment, but it doesn’t last long once the substitute plan is in place. Over the years my sons have become familiar with this way of dealing with obstacles and often suggest their own alternatives.
Humor is also part of the equation. Whenever I was stranded on the stairs in our split-level house, I would call to order a meeting of the "stair people." These "meetings" would result in some great chats. Leg spasms have given me the opportunity to dance with my children. To this day, when my legs have a mind of their own, my older son will laugh, grab my hand and we turn these unusual movements into unique dances. Over time I have seen my children benefit from the PMA as they, too, turn lemons into lemonade.
In a child’s eyes
From the onset of MS, I have tried to see events through a child’s point of view. Since I was diagnosed when my children were so young, I was careful what I told them. The most important information for them was how they would be affected and what would happen to the person they depended on for care. I told them MS was not contagious and that I wasn’t going to die. As symptoms became obvious, I identified them and always answered their questions.
I’ve also been sensitive to their individual coping styles. My older son is uncomfortable talking about my disease. I have respected that, but periodically remind him of the people, including myself, available for support. My younger son is sensitive to changes in my health and requires lots of explanation, cuddling, quiet conversation and time to observe. When they were 5 and 8, the younger one watched intently as intravenous medicine was administered in our home. The older one disappeared into the family room until the procedure was finished.
My husband and I are aware that maintaining their routine is important for our sons’ sense of security. This is especially evident when I am in the hospital for extended stays. During these times, friends and family help keep things moving smoothly. We also try to preserve family time with frequent hospital visits that include meals and quiet games.
We also try to be sensitive to changes in the boys’ needs during crisis situations. The last time I was in the hospital they both were seeking more affection than children their age usually require. My 12-year-old was sitting on his father’s lap or snuggling up to me in bed. My 15-year-old also supplied me with hugs and kisses that I normally don’t receive anymore. We also try to provide fun activities, such as movies and dinners with family and friends. We make sure that they know there are many people around to help them, including us.
A little help from our friends
When I first became ill it was difficult to accept help from others. My husband and I knew our friends had busy lives and believed we could handle it alone. As the disease progressed, causing drastic changes in my ability to get around (I can no longer drive) and frequent hospital stays, it became apparent that to preserve a somewhat predictable life, help was vital.
The support that friends and family have given us is priceless. Countless times friends have shown up with meals, groceries and most importantly, chocolate. They have taken my children to school, movies and out to eat, provided them a safe haven and filled in the gaps when hospitalization is required. They have also been there when I need a listening ear or companionship. One friend, who hates household chores, even came to my aid as I stood in the middle of my kitchen trying to figure out how to clean up the tomato soup puddle on my floor. As she rolled up her pants to work, she jokingly requested that I call on her for shopping errands in the future and leave the cleaning to another friend.
To this day I still find it hard to ask for help. Since the assistance required is not just on a one-time basis, I feel that it’s an imposition. During my most recent hospital stay, I thought twice about picking up the phone to tell people where I was. It felt like this routine was getting too old and too self-serving. The long hours alone in a sterile hospital room loomed large, so I did make those calls. Before I knew it I had visitors bringing lunch (hospital food barely touched my lips), nonstop phone calls (a nurse said she thought the phone was attached to my ear) and many offers of assistance with my children. Even though my sons are older, I was so relieved they would receive extra support. And it was good to know people were helping to lighten my husband’s load so he could focus on our children.
How far can I go?
Accepting my limits is a challenge. I tend to push until I can go no further. The result is my symptoms go wild and I’m totally inaccessible to my children for longer periods of time than if I had taken a few hours to rest. Even though I know this, the "Guilt Monster" often takes over. I can hear my inner voice saying, "I promised we would make brownies. I can’t let them down." Of course, the reality is that my children will survive and I won’t be less of a mother for it.
When my sons were younger, taking required naps was difficult. My children have now learned that a sleeping mother is part of life. They have accepted that a shared video might result in a snoozing mom. My younger son, who used to try to keep me awake, now accepts the inevitable. Later, as I rub the sleep from my eyes, he tells me that he is just happy we had time together. Once again the "Guilt Monster" emerges. To effectively squash it I have to remind myself that if I take care of my health, I will be more available to my family.
I asked my sons what it is like to be a child of a parent with a chronic disease. My older son said that I was like any other mom. We just got to eat takeout more often, which he saw as a plus, and he enjoyed my unique dancing. My younger son said that sometimes my MS ruined our plans, but he got to do other fun things instead.
I know that my family’s journey with MS has rough patches ahead, but I also know that we will continue to support each other and employ our creative problem-solving skills, sense of humor and PMA and continue to make lemons into lemonade.
Naomi Leithold is an award-winning storyteller, early childhood educator and Chicago Parent storytelling columnist. She lives in Skokie.