What I would give if my children had not had to grow up with a mother who was blind and had MS! Their lives would have been so much less complicated. Without a doubt, the hardest thing to deal with when you have MS is how it affects your relationships with the people you love most, your family. At least, for me, it was like that. From my grandparents to my children, each association underwent varying degrees of change. Some feared, some obsessed for a time, but throughout it all, the children knew only how to show love and acceptance while they were young, and something more as they have grown.
When I was first diagnosed with MS my symptoms were pretty intense and my legs were very sensitive and painful. The slightest touch to either leg would evoke an immediate reaction of ill-concealed frustration or carefully muted tolerance depending on who was making the physical contact. The reason for this was that I had 3 children under the age of 7 at that time and I was determined not to share my feelings of frustration with them at all. Unfortunately, children are very perceptive and they know when we are hurting and would do anything to take our pain away, “to kiss it and make it all better.”
As their mother, I wanted to be in a position to run and play with them, to toss them in the air and catch them shrieking with laughter on the way down, to be able to just let them sit on my lap and snuggle. For my two-year old son, Paul, this was not a possibility much of the time. He always had to ask which leg was hurting the worst and where he could sit to get closest to me without causing pain. That’s a lot of responsibility for a toddler to have to think through. I would have given everything to spare him that at the time, even though I now know it has helped to make him a sensitive, outstanding adult who is now anticipating the birth of his first child.
To give you an idea of just how protective he was of me I will reference a rather strong earthquake that happened in church one day when he was about 15. The pews appeared to be rolling like waves and it lasted for quite a long time. It stopped without worsening, however, and that would have been the end of the story had I not heard from one of his church instructors. She asked each student in the class what they would have done if the earthquake had worsened. Most gave flippant answers. My son said he would have helped his mother (me) to the floor and covered her with his own body to protect her from any falling debris so she wouldn’t get hurt.
My daughter, Annette, has always been able to read my mind as I could hers, from the time she was a very little girl. We are very much alike. She was 5 when MS came crashing into our lives and in kindergarten. As a teenager in middle school drama class, she was once asked to act like a blind person on stage. Since I am blind in addition to having MS, she knew just what to do. She walked up on stage and began to pretend she was cleaning a house, dusting furniture and so forth. The class and teacher told her she must trip over things and stumble to act blind. She refused to do and informed the teacher she knew dozens of blind people, none of whom acted like that. She was instructed to have a seat since she would not correctly portray the word as expected. I was enormously proud of her.
Harriette, my eldest daughter, was 7 in 1990, and she liked to do fun, physical things. I remember going to the park with the family to play a little softball. I took my turn at bat and actually manage to hit the ball, or more likely it managed to hit my bat. I naturally turned towards first base and took about 4 faltering steps before I remembered that I couldn’t run. I was feeling a little defeated, but I could hear her cries of approval for my small act. Another time, we tried leg wrestling. It was some years later and my legs were no longer sensitive to the touch, just numb and tingly. Harriette may have been 11 at the time and I think she thought she could win, but I was still a little taller and stronger, at least enough to prevail, twice. She was impressed. I was jubilant and exhausted. It was a victory for both of us.
For the sake of having some possibility of quality of life with MS to share with my children, I have submitted to just about every treatment for MS that can be legally obtained, including more than 200 infusions of IV steroids, Betaseron, Avonex, Novantrone and Copaxone. I’ve tried the Swank diet, some herbal remedies and plenty of medications to treat the symptoms and other illnesses that have arisen over the ensuing 21 years.
Was it worth it all? You bet! Was it easy? Of course not. Would I do it again? I am, because now I have grandchildren, another whole generation to share my life and watch another branch on my family tree grow. I’ll never quit trying to give what I can, accept what I must and let the love of my terrific family and the ongoing miracles of modern medicine Keep me going for a good long while. And if my life is harder in the long run for the choices I’ve made to have the last 21 years, I’ll face that new reality and learn to live with it and love it knowing that I have a totally loving supportive family. And as close as I can determine, they are the kind and devoted people that they are not despite the fact that I have MS, but at least in part, because I do.