|Sharing A Disease|
When I was 45 I wrote an article for my website about growing old and looking forward to it.* Many of my dearest friends and most memorable acquaintances through life have been elderly. They possess such a wealth of wisdom and depth created by years of experiences. Iím one of the few people I know that embraced growing older.
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Itís ironic that, a few short weeks after writing my article, my father (who left us when I was 12) was involved in a car accident and a doctor unwittingly revealed that Dad had Huntingtonís Disease. Two weeks later, Dad died from pneumonia caused by his HD weakened lungs and the father I had protected my children from knowing blasted back into our lives with the destruction of an earthquake. I spent countless nights devouring the internet link after link looking for information about this disease I had known nothing about. The more I learned, the more I despaired as I began to recognize my heritage and myself. My despair, however, was not for myself as misleadingly heroic as that sounds, but for our children for whom every goal in my adult lifetime was to benefit. That I could cause them a future of illness was unthinkably devastating. Three weeks later, barely 6 weeks after my fatherís accident, I tested positive for Huntingtonís Disease and by proxy my children became 50% at risk of having the gene which would guarantee them the illness.
Naively, you would think that having a disease shared by family you would find yourself surrounded by understanding. My first reaction was to seek the comfort I so desperately needed. Who could I turn to? Not my siblings, who were dealing with their own reactions to this new enemy in our lives and the death of a Father we always wished we could have had. My husband, Mike, never wavered in his love for me or his promise of ďa lifetime of commitment in sickness and in healthĒ, but was stoically hiding a broken heart caused by my diagnoses and fear for our children. My mother was facing the fact that all five of her children were at risk for a terrible disease and in fact, two had already tested positive; to survive she needed to distance herself from us while she absorbed the shock. The most painful result, was the feeling of shame I sensed from family and friends. This is a disease that can involve mental changes and an uncontrolled body which are not as acceptable as tumors or pain. As I watched my future as a wise old matriarch fade away with the reality that my future involved dependency and wasting I resolved to at least go into it with the same honesty I had been willing to give to aging. I am a small woman who has been known to move massive pieces of furniture alone by pulling it on a throw rug. HD wasnít something I could slide, I was going to have to carry it firmly across my back. Someday my children might have to face the same future and I am setting the example for dealing with it. Huntingtonís is a disease not a judgement, and in this family it is a part of us until a treatment can be found.
My oldest son Sam 23, has his own home and feels free searching for information and asking questions. He knows he is at risk, that illness could strike in middle age. He knows he has choices he can make when marriage and childbearing become possibilities in his life. Our youngest children, Ruby 11 and Gary 9, live with us in our simple country home. We chose years ago to make them our priorities, we home school them and they are active in all aspects of life as a family. By our deciding to face HD head on, our children have become aware of it naturally. We donít exclude them from conversations when we discuss it, they are welcome to listen and absorb what they need. They know when I have Dr. appointments and they know my limitations. Two years ago, Ruby told me that when she grows up she will want to have a home with her husband and children, but they will build it near ours so she can bring her children over and let me see them playing in the yard everyday while she combs my hair for me! The wisdom of a child. She doesn't feel she needs to eliminate the disease to dream. We design and wear t-shirts promoting HD awareness, we participate in fundraisers and the kids know we are raising money to help find the cure that might prevent them from having HD. Through daily osmosis they know more about HD than many Drs. and they accept it as a disease, not a curse. With acceptance they donít know they possess, they remind me of appointments, they automatically check the stove for lights when they walk by, they know I get tired in the afternoon and they can joke when I walk off a sidewalk or ďpeek around the cornerĒ when trying to stand still. Most importantly, I am still their Mom and they still trust my teachings and love without question. Someday my grandchildren will know me, not by what I will recall for them, but by the memories I can create for them today in others. Life is still a journey well traveled, we just donít always get to choose the path.
photo - left to right: Ruby, Sam, Me, Gary, Front: Mike
- published May 19, 2000
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