August 13, 2004
"Coming Out" As A Person With Parkinson's
Well, now I've gone and done it.
In this week's local paper someone wrote in criticizing Stem-Cell research and I just had to respond. It was just so full of misinformation and political/religious agendas.
I thought it might be interesting for people to get a viewpoint on Stem Cell research from a person who might quite possibly benefit.
Anyway, here's the letter. It's kind of long, but I did have quite a bit to say.
To The Editor;
Jackson Progress-Argus
Dear Sir;
Imagine what it might feel like to be 42 years old, finally after years of hard work and struggle, building a career and life, to discover a tremor in your arm and then be told after testing that you have Parkinson's Disease, a term you had never thought twice about before. When you have heard of it in the past it was always associated with the elderly, surely not someone as young as you.
You then go on to discover that Parkinson's Disease is a neurological disorder that affects the neuro-muscular functioning of your body, looking down the road you picture yourself wasting away to weakness and incapacity, the only variable in Parkinson's being not necessarily what will happen to you but how fast it will all come to pass.
Imagine having to leave the career you had spent more than a decade working hard to build, one in which you had achieved an amount of success that told you that perhaps you had found your life's purpose. Imagine that you had to leave all that behind because your body could no longer keep up with the demands of your job.
Imagine your self-esteem in that all your life you had an image of an adult male as being a breadwinner to his family, holding up his own end of the financial bargain in a marriage, and now you find yourself increasingly relying upon your spouse to take up the slack at the end of the month. Imagine how this might affect your self-esteem and sense of worth.
Imagine the medications you are prescribed having side effects that often seem to outweigh the Parkinson's symptoms, including fatigue and grogginess which makes you feel tired and worn out most of the time.
Now imagine that you begin hearing about something called Stem-cell research. It's also a term, like Parkinson's that you had not had reason to come across until now, but you are also hearing new words associated with Parkinson's and Stem-cell research that you had never heard before. Words like "hope", "possibility" and those precious words, "heal" and "cure".
You had been picturing a life of less and less functioning, growing weaker and weaker until you were finally prematurely bedridden, a living death, but now you sense something new, a spark of hope. A dream perhaps because it is all so experimental and sounds so complex, but nevertheless, a spark inside that you had not felt in a long time.
Now imagine this hope being dimmed. Dimmed due not to the limits of scientific possibility but due to a world-view, an ideology. A view based on one group of people's interpretation of their sacred book. Their religious viewpoint. Due to this world view much-needed federal funding is prevented from paying for research that could alleviate your discomfort and perhaps even find a cure.
You try to imagine why something so personal as a religious view has to encroach on others like this. While you respect and admire their convictions, you realize that this should work both ways, after all, you have always been careful not to impose your spiritual values on others.
It becomes confusing when you think that the people who have this thinking seem to value a barely formed set of embrionic cells more than they value you, a formerly very productive adult with a family and loved ones, who would like nothing more than to return to full employment and his place in society.
You then wonder about a set of beliefs that proclaim God is love, so much love that it is taught this God willingly gave His only son to earth to die for man. Surely, a God of sacrificial love and giving for others could not be adverse to a few cells being given to save an adult human life. But sadly, this God's followers would seem to disagree.
In this letter I've written "imagine this" and "imagine that" a lot, but this is not an imaginary journey for me at all. I live this letter daily, it is my very life and my heart. You will probably turn your eyes from this article and my life will be forgotten, and that's okay, but I want to write this so you know that this is not some game of debate and theories we are facing here. I am the guy in the line with you at Ingles'. I am in the car next to you going down Third street. I am the man in the voting booth beside you. This is real and we need real answers to this devastating problem.
Perhaps one day we will look back at 2004 and wonder about how backwards we could have had things. I remember hearing that certain vocal members of the clergy used to preach against radio and "aeroplanes" because the devil is called "the prince of the power of the air". We can chuckle at them and think they were so wrong, but let's not be like them, let's not stand in the way of possibility and potential with active, productive people like myself falling from our ranks, a possible cure sitting on a shelf as we debate and quibble endlessly.
Stem Cell research means needed hope and a possible cure for me and others like me with many, many diseases and disorders, not just Parkinson's. That is the reality of it all. The rest is details.
Posted by Lalo on August 13, 2004 10:35 PM