My husband and I were driving along a country road with no destination in mind. We needed to escape the city and our lives for the day.
We drove past fields of tall, golden grass waving in the breeze, and turned down random roads that we happened upon. We cracked the car windows and blasted music on the stereo.
I had been diagnosed as gene-positive for Huntington’s disease a few months earlier and needed to get away from the scary thoughts in my head. Huntington’s is a degenerative neurological condition that causes cognitive impairment, uncontrolled movements, and emotional issues. Carriers of the gene will develop the disease but don’t know when symptoms will appear.
At the time, I had trouble seeing myself as anything more than my diagnosis, and I was fearful my husband would leave me. Why would he want to stick around if I am going to get a mental illness and die, I thought. I no longer understood my value as a person. I couldn’t see what I added to the world — I only saw the burden I would become.
I stared out the car window at wispy, white clouds painted across the blue sky, listening to the song “Weighty Ghost” by the band Wintersleep. We played it on repeat because the melancholic tune matched my mood.
We had been trying to conceive a baby when I was diagnosed. After finding out there was a 50% chance I could pass the Huntington’s gene to our child, I struggled with our decision to have a family. I felt it would be my fault if our child inherited the disease, and I didn’t know if I could live with that. I connected with the song’s lyrics, because I also felt like a ghost, detached from my body and floating above my unrecognizable life. The future I had dreamed of had been destroyed.
More than a decade later, hearing that song still causes my heart to drop. It immediately transports me back to those dark days when I was first diagnosed and had no idea how I would ever feel better again. When it comes on the radio now, sometimes I have to change the station.
That is, unless my husband reaches out and turns the dial first, because he knows how the song affects me. He still remembers the blank look I used to wear across my face when I was lost in my own mind. He hasn’t forgotten how much I cried, my eyes constantly swollen and red, and how there was nothing he could do to take away my pain. No matter how much he said he loved me, a part of me didn’t believe him because I thought that with Huntington’s, I was unlovable.
Other times when “Weighty Ghost” comes on the radio, I listen to it as a way of proving to myself how far I have come. I went through a bunch of crap, but you are not going to make me cry this time, I think as I revel in the strength I have gained from confronting my fears about Huntington’s disease.
It took a long time and a lot of therapy, but I finally have come to terms with my diagnosis. I have learned that Huntington’s is not all of me. I know that I am deserving of my husband’s love and that I have much to offer the world.
That song will always remind me of those troubling years, but it also presents an opportunity to reflect upon the goodness in my life. I have many things to be thankful for, but I am most grateful for my husband.
He supported my decision to go through genetic testing. He was sitting next to me, in that sterile hospital room, as the geneticist read my results. He held me as I cried myself to sleep every night for months on end. He didn’t leave me when I offered him a divorce, suggesting he should find a better wife who wasn’t going to get sick. He stood by me and believed in me when I didn’t believe in myself.
I have no doubt he will be there for me when I become symptomatic for Huntington’s, too.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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