I was alone in my flower shop, surrounded by a rainbow of fresh flowers and bright orange walls. The warm summer sun filtered through the floor-to-ceiling window. Despite the beauty of my surroundings, my mind was at the bottom of a deep, black pit, and I was struggling to get out. My life felt devoid of happiness.
Ever since I was diagnosed as gene positive for Huntington’s disease (HD), I’d done everything I could to avoid being alone, but some days it was inescapable. That day at my shop, I wrote a long list of chores to keep myself busy so that my thoughts wouldn’t stray to what I was desperately trying to forget. “I am going to get HD. I am going to get HD.” would play on a loop in my head unless I focused on something else.
I was restocking the display of greeting cards, biting back my tears, when a middle-aged lady walked through the door. She pulled homemade jewelry out of her purse, placed it on the sales counter, and asked if I wanted to buy any. She told me that she had survived breast cancer and was raising money for the cause. I don’t remember buying anything, but after she left, I thought, “I don’t want to be like her.”
I looked upon her openness as weakness. I felt that she was letting her disease define her. I was fighting so hard to get away from HD and my ruminating mind that it was impossible for me to see that there could be a balance — that being a cancer survivor was just a part of her, not all of her.
It is only now that I realize she was stronger than I was and had reached a level of acceptance that I didn’t understand was possible. I was consumed by fear and desperately trying to figure out what it meant to live as gene positive. In the midst of that emotional turmoil and confusion, I was showing my own strength by being brave every day.
I was brave the first time I attended an HD couples support group. I remember sitting in a hard plastic chair, chewing on a juice box straw, trying not to cry. When it came time to introduce myself, all I could manage to say was, “I can’t do it.” So my husband took over.
“I am Daniel and this is my wife Erin. We found out she was gene positive two months ago.”
I was brave when I watched the old man at the grocery store, his hands quivering as he reached out to pay the cashier. “I wonder if he has it, too?” I thought to myself. Then I ran off to cry in my car. Simply looking at the man was all I could manage that day.
I was brave when I attended my first HD conference in Prince Edward Island. I walked around the whole time with puffy, red eyes because every single thing I heard was scary and made me cry.
I was brave every month as my husband and I tried to conceive, even though I was terrified of passing on the gene. I would imagine the doctor placing our baby in my arms after I’d given birth. I wondered if my first thought as I gazed into those little eyes would be, “Did I give my baby HD?” I didn’t know how it would be possible to live with the guilt if I did.
I was brave when I volunteered to appear in an awareness video for HD. I didn’t disclose my gene status, but it was the first time I publicly connected myself to the disease.
I was brave when I stood at a podium in a room full of people. With a slightly quivering voice, I told the conference attendees my gene status and I spoke about the fears I had overcome to have our daughter.
I had to take those and a thousand other courageous steps toward embracing my gene status. When I was first diagnosed, I didn’t think I would ever be happy again. I just had to trust that what I was doing would work. Slowly, I became one of those people who talk about their disease, just like the woman I’d met in my flower shop. I am stronger now and I continue to challenge myself to be brave.
As a member of the HD community, I have no doubt that you are being brave every day, too. Sometimes, that means just getting out of bed in the morning or reading an article about HD. Other times, that means advocating for your affected parent or attending a support group.
I see you, and I admire your bravery and strength.
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.