Huntington's Disease Personal Stories: Simon Pelland
People don’t talk about these things because through fear of judgement. They don’t share Huntington’s Disease personal stories because this can make them feel even more alone than they already are. That’s what it was like for me.
I was 17. It was a warm August night and I was waiting for my Dad to come pick me up and take me to a movie. I wasn’t particularly looking forward to it. My parents divorced when I was 2 and I hadn’t seen him in a few years. He barely knew me and we didn’t communicate much. On our way into the movie my Dad seemed like he was walking a little strange. Like someone who was a little more than tipsy. When he spoke, there was a slight slur in his words. I don’t remember the movie, but I remember when I got home I said to my mom, “I never want to see my Dad again. He’s on drugs”. She looked at me and said softly, “your Dad has Huntington’s disease.”
I suddenly felt more compassion and empathy for my Dad than I had in years. She told me that the disease is like having Alzheimer’s, ALS and Parkinson’s all at the same time. She said his condition would get worse over time. Then she dropped the bomb. “It’s genetic” she said, her voice breaking, “and there is a 50/50 chance the same thing will happen to you.”
Out of Sight. Out of Mind.
Fast forward a couple years and I was off to university. By now I knew this disease could seriously impact my life, but it wasn’t on my mind much. I was distracted by basketball and girls and sometimes school. By my third year things got a little more serious and I started to realize I couldn’t stay in school forever. I began to worry. I wouldn’t say depressed, but I did have thoughts of suicide. I thought: Why have a career if it’s only going to be taken away from me later? Why have a girlfriend or wife if I’m going to die young and in a terrible way? I have a ton of empathy for people who have thoughts of suicide or depression. People who kill themselves do it because they feel the pain is so bad and it’s the only way to stop it. That thought is so real in their minds until something or someone inspires or encourages them to sit with the pain and let it be and trust that it will pass. But sometimes, tragically, the pain is too great.
The Things We Never Talk About
Not trying to get all dark on you, but I want to talk about some things that people never talk about. Like disease and sadness and suicide. People don’t talk about these things through fear of judgement and feeling even more alone than they already are. That what it was like for me. And still is from time to time. I felt if I was to share that I was terrified and felt so stuck, that people wouldn’t want to be around me. Or that there would be something wrong with me and I would be medicated and stuck in a box labelled “depressed” or “diseased”.
The Courage to Get Tested
I have been very fortunate to have had some incredible family and friends in my life. My mom made me comfortable in my own skin and helped me to believe that I was capable of anything. My grandpa spoke to me like an adult ever since I was a little kid, like he was training me. And he did train me – to be strong and to push through. And thanks to a lot of personal development and a great friend, I summoned the courage to get tested for Huntington’s disease 3 years ago and began sharing it with people.
Telling people about Huntington’s disease is scary for me, only now the cost is too great to not share.
I know there are millions of people in the world who feel stuck or in pain and the only way out is through sharing. If I stay quiet, why should I expect anyone else to do something different. I need to share what’s going on with me so that someone reading this sees themselves in it and perhaps even nourishes their own courage to go and share themselves or ask for help.
I started to share more and more and now anyone who knows me knows that Huntington’s disease is a part of my life. I am positive for the gene. I will likely lose my ability to make decisions, to problem solve, control my emotions, have short term memory, walk, talk, and swallow. But that’s not going to happen. I am going to do everything in my power to create a cure or come up with treatments for Huntington’s disease so that I, and many others who love being alive, get to live a long and amazing life full of ups and downs that we get to share together!
You Are Not Alone
My Dad has been in a long-term care hospital in Toronto for a number of years. I continue to share about Huntington’s disease awareness on all social media platforms and have started a podcast with my friend and fellow Huntington’s disease gene carrier Manny Abecia. People with Huntington’s disease personal stories and other disease have reached out to me for an ear or support or questions. That is extraordinary. That is the whole point of all this. That we get transform how people relate to, and cure disease. To know you are not alone. That you’re empowered in every circumstance.
Living with disease and dealing with depression alone is awful, it’s like a death sentence. I encourage you all to overcome your fears. Reach out to friends or family or even me if you like. Tell people what it’s like to be you, share your Huntington’s disease personal stories… I’ll listen. You can contact me at firstname.lastname@example.org or through Instagram @simonpelland.