It was my new year’s resolution for 2010 that I write my sick aunt a letter once a month. I sent her my last letter a few weeks ago. My aunt died this week from Huntington’s disease. Most people aren’t very familiar with it. Only 1 in every 10,000 people has it. Huntington’s disease is a degeneration of neurons in the brain because of a mutated gene. The symptoms are similar to Parkinson’s: uncontrolled, jerky movements in the limbs and face. But Huntington’s also includes loss of intellect, memory, ability to speak, and changes in behavior, like irritability, moodiness, restlessness. A person may have difficulty learning new things, remembering a fact, or making a decision. Eventually the person requires constant medical care and becomes bedridden and isolated. Most people die of choking or malnutrition because it becomes so difficult to swallow. Suicide is also high among people who have Huntington’s. There’s no cure. The only treatment is to slow its progression with medication. People can suffer 10-25 years.
If one of your parents has Huntington’s disease, you have a 50% chance of inheriting the gene. My grandmother had it. She had four children. My aunt had it. I know my dad has it, but he won’t talk about it. That means my sister and I have a 50% chance. I realized all of this about four years ago, and since then I’ve had this feeling in my gut that I have it too. I can’t really describe this feeling. It’s not a peace that I feel. It’s like I know it in my heart, but my head needs proof.
I could get tested. It would be easy. But the repercussions may not be worth it. I’d likely face genetic discrimination by an insurance company or an employer if they knew about the results. Obviously getting tested is a risk. So I keep asking myself, is knowing it just in my heart enough?
Is it enough to change the way I see my education? My career? My family? My friendships? What if I was in a relationship with someone? Would I tell him? Would he call it all off if I did? Would it be morally wrong if I didn’t tell him at all? Would I want to risk passing it on to my children? Would it even be worth it to know it now at such a young age?
I’ve been seriously questioning what it is exactly that I want out my life. I’ve started asking myself the questions I like to ignore, like what’s next? What opportunities do I need to seize? What are my priorities? Where do I want to go and how to get there? What risks do I want to take? What’s my purpose? What are my fears and how do I conquer them? What are my dreams? Who do I want to meet? Who do I want to be?
One question in particular keeps pounding in my head. Should I begin living my life as if I have this disease when my heart knows but my head doesn’t have the test results to confirm it? A 50% chance seems so real. If I knew 100% that I had it, would I be angry and ask why? Or would I accept it and ask what now? Do I really want to know? Do I need to know? I realize that I have so many questions and worries about this, but I find great comfort in this verse:
“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Psalm 73:26.
My brain and my body will degenerate, but I will cling to the Lord. There is so much I want to do, so much I want to see, so many people I want to meet before the days come when- like my beloved aunt- I can’t be still enough to even read a letter from my niece.
