Wishing for a cure? If you are like me, I wished many years for a cure for my son’s physical disability. I think I spent many years campaigning, and fundraising trying my best to do my part in finding a Cure. Our family watched as our son lost his ability to walk at age ten, and sixteen years later, he needs help with everything from bathing, dressing, feeding, and transporting. In fact, he is brilliant and operates an electric wheelchair with the use of one finger, and also is ventilator dependent. He can wiggle his toes, but can no longer lift his arms or feet, or even turn over in bed. So, please forgive me if my views have changed over the years. You may be surprised to hear what I have to say, because it is not negative.
There are no words as magical as the word, hope, or the word, love. These words are tied to our emotions. If you witness an opposing view regarding Finding a Cure, you may take it very personal. I know this because I heard someone say, “Why do we need a cure?” when my son was very young. I was shocked he felt this way, but he was living with his disability for his whole life. I took it very personal, and I even became angry for a bit, though he was not directing it towards our family in any way. He was speaking from his own experiences. This is what we all do.
It is my opinion, that there is a great deal of money to be made selling Hope. The fundraising is infinite. The head of the American Red Cross quit after 9/11 partly because money poured in from across the globe at such a rapid rate, that our country was not prepared for any disaster of that magnitude.
My belief is that the Cure is very far from our reach. We are mortal. We have to wonder at what expense will a Cure be found? Since my son was a little boy, the Cure was predicted to be a few years away. That was 22 years ago. Scientists are trying many avenues to find these cures. The quality of life has advanced several years, and that, I believe is most important. This is due to funding, research and development. Families are talking about a new revelation called Exon skipping. It has to do with genetic deletions and knowing your son’s exact deletion. I think it is amazing research but I have to wonder if this is just another way of selling Hope. Then again, scientists have created vaccines which stopped smallpox, tuberculosis, and polio. They couldn’t cure those who were already affected by those illnesses. Families discuss research trials, and many seem to have a sense of desperation with their newly diagnosed child. The clock is ticking. I understand, because I was there once. Reading as much as I could about the research, gave me lots of Hope. It gave me control over something for which I had no control. My thoughts are that Hope should be coming from within, not from outside. I am just posing a different viewpoint from someone whose son is much older. He is comfortable in his own skin, but it took many years.
It also took me many years to accept all that came our way. We fought to get doctors to listen to us and continue to do so. However, it was not until the past few years, that I came to terms with my own feelings. I was in church one day, which was a rare occasion as I seldom attend church. I was in church because another son was a member, so I joined him. Forgiveness was the topic of the sermon. I was talking with a woman next to me who started to cry and said she needed to forgive the doctor for a bad surgical procedure which diminished the quality of her life. She was broken up, so I reached over to hold her hand. Little did I know, I would be overcome with such deep feelings. I confessed to her that I believed that my son was perfect, just the way he was supposed to be, wheelchair and all. I told her how I had forgiven him for his disability. I had no idea, I had been carrying this pain, and I hope my son was never burdened with my feelings. I would never mean to cause him pain in any way. I was ashamed I had felt this way because my son had done nothing wrong that I should feel this way, however those intense personal feelings were not evident until I was listening to the sermon. In the beginning, I feared terrible things happening to him, and it was revealed to me by a counselor that I saw our family as victims. That made sense to me, though I had not thought of that. So I found through the years that I have grown in ways to overcome all those feelings.
The last year or so, my other son was diagnosed with mental illness. I also think he is perfect the way he is meant to be, but I am concerned he does not self destruct in front of me. I have checked on his medications, hoping he stays compliant, for his own safety and well being. I have never heard of an organization selling for a cure for Bi Polar or Depression. I know there is an Alzheimer’s Organization, which raises money in the fight against Alzheimer’s. It is a fight, not a cure.
Money is raised for cancer, breast cancer, and mostly physical conditions. Exactly what would a cure look like? How will we achieve these cures? With technology, we are able to watch the baby develop in the womb. We are coerced into having numerous tests, for what? My doctor wanted to administer a test on me when I was pregnant, to see how the baby’s brain was developing…for what? I refused this test but it did not stop them from pestering me. So if the brain wasn’t developing correctly, what then? It is a miracle to be born “perfect”, but who could ever predict a child’s future? We have no guarantees. Life is now, so must live each day to our fullest. All the available testing could never predict what could be wrong with your child. When we use terms like “eliminate” to describe a disease… well what does that look like? I have already heard of people not being covered by insurance if they are carriers of defective genes. Who decides what perfection should look like; Insurance companies, the government, doctors? Do we reject everything less than perfection? It is subtle. On a trip to the grocery store, I notice that the tomatoes on a vine all appear exactly alike. I know these comparisons have nothing to do with one another, but we need to ask where we are going with all this eliminating illness and disease. Nobody wants to see anyone suffer, but are we so uncomfortable that we can’t bear to have differences within our society? At some point in our lives, we will all have great physical and mental/ cognitive challenges.
Lastly, I ask you to think about mental illness for a few moments. Are we going to eliminate this as well? Disability, either physical, or cognitive, or mental, all impair a person’s life significantly. One boy was an athlete, very social, popular with many friends. There were severe changes out of character for him, which caused concern. His judgment was very bad at times, resulting in risky behavior. He was suspended in time, not concerned with goals. Motivation was lacking and the pursuit of passions came to a screeching halt. He hopped from job to job, some jobs lasting only a week. Each day he was going to do something different, changing his mind in a moment’s notice. Racing thoughts became the norm. Isolation became his way of life, even isolating himself from his family, with whom he lived. If you can imagine, the concern was great. Hospitalization and non adherence to medicine became the norm. The unpredictable was becoming predictable. So I ask you to consider, how can we find a cure for someone like this young man? We can make plans, but things change. Life is not perfect.
In life, we are always facing obstacles, either an accident, an illness, or onset of dementia. Cures can be sold to anyone willing to buy some Hope. Hope is the last thing we are willing to let go, because the will to survive is very strong. In the end, finding a cure is a matter of the heart. Some of us are happy with a better quality of life, so we won’t spend our lives wishing for the fairy tale of a Cure to land on our doorstep. In the end, I mean no disrespect to those working for a cure, because it is your turn to go to bat. Like those who did the same before you, it will mean a better quality of life for our families. Sometimes we lose our hope when our loved ones are ill. Our dreams are lost. But it is within ourselves that we find peace again. Emotions range from grief to anger, back and forth like a rollercoaster. In the meantime, acceptance did not come easy, but when it did, peace soon followed.
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