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Page 6
Tessa knew of the disease, but I tried and succeeded in keeping her shielded from it. In hindsight, that was selfish, and probably a mistake. There is a lot of guilt associated with this disease. I worry for Tessa.
If found not to have the gene: In this scenario, I would be truly shocked. Therapy would definitely be in order. I would have to come to terms with worrying the past 37 years about this disease. I would have to deal with why I was so sure I had HD. I would have to learn to deal with the way I am without having HD to blame. Being at risk truly controls one's life. There is no escaping it. If I test negative, I would still consider myself with HD; Not gene positive, but it has controlled so much of my life, I can't be without it. I still have 2 sisters hospitalized and a brother, 2 nieces and a nephew at risk. Don't get me wrong, I would be euphoric with a negative result. The burden lifted, life would be much easier to deal with. The future would definitely have a shine to it. I'm not saying all would be rosy, just a heavy weight taken off my back. Regardless of outcome, I believe both Tessa and myself have a strong relationship that can endure a lot. I think we will still contemplate children, marriage, buying a home, etc. Decisions in these regards will come easier with closure on this chapter of our lives. So, as I said at the beginning, in many ways the DNA outcome is not the issue, here. For me, We are talking about closure, acceptance, and peace of mind. The first visit took 4 hours; the second visit took 6. On the second visit we went over my family tree. I could see it in Ruth's eyes; I was doomed. No one had escaped HD for 7 generations. We went over the entire tree and discussed symptoms of each. I talked to the psychiatrist there and it was horrible. Trying to convince someone you don't know that you can handle results is hard. We discussed my childhood and my 2-pHD sisters. It wasn't easy. She told Ruth I could handle the results. Another person was ushered in to draw the blood. We were to personally deliver the samples to Federal Express. Close to the end of our visit, Ruth said, "Since you don't seem to be overtly displaying symptoms..." I never heard anything else. She had confirmed my self- diagnoses. I was able to hide the symptoms, so far!
The copyright of the article Ray's Story - A Story from One At - Risk - Page 6 in Huntington's/Brain Disease is owned by . Permission to republish Ray's Story - A Story from One At - Risk - Page 6 in print or online must be granted by the author in writing.
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