Three Guys, a Podcast and a Powerful Connection
I was in a dark and grungy bar, not the sort of place I usually spent my Sunday evenings. I should have been at home putting my daughter to bed, packing her lunch for school, and cleaning up the kitchen. Instead I had ventured downtown with my husband for a live taping of a podcast that made me feel like less of an outsider, that made me feel understood.
We got there as soon as the doors opened, only a handful of people had arrived. I was surprised to see the hosts of the podcast collecting tickets at the door and mingling with the guests. I thought they would be off in the green room getting ready. Go talk to them, my inner voice urged. I wanted to tell them what their podcast meant to me, but I wasn’t brave enough to approach them. Instead, I walked to the front of the room to find seats because I couldn’t think of anything to say. Thirty minutes later the bar was full. We settled into the rickety folding chairs to watch the three hosts, Taylor, Jeremie and Brian, interview a guest with their unusual mixture of humor and insight.
I had only started listening to the podcast a few months before and felt an instant connection. The three best friends talk to people about living with illness and try to break down the stigmas around sickness and disease. Each time I listened to an episode, no matter what the topic, I would inevitably think to myself, yeah, that’s how I feel. It was a connection I had been searching forever since I got diagnosed as gene-positive for Huntington disease (HD) 10 years ago.
HD 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 the symptoms will appear. After my diagnosis, I had knowledge about my future that most people don’t know about themselves. I have the gene, which means that with 100-percent certainty, I will get the disease at some point in my life. Discovering this changed the person I was. I became terrified of my future. I was severely depressed and developed an anxiety disorder.
Feeling Like an Outsider
I needed to come to terms with this drastic turn in my life, and to do that I needed to talk about it. The times when I got up the nerve to confide in someone though, the discussions never went as hoped. I remember telling my closets girlfriends while out for dinner one night. “I feel like a weirdo,” I said. “Like an outsider because I know what is going to happen to me.”
“You’re the same person to us,” one of them replied nonchalantly as the others nodded their heads in agreement.
“But I am not the same,” I said. “I am different now.” I continued trying to express why I felt disconnected from society. Then one of them looked around the table and asked, “Watched anything good on Netflix lately?” She was clearly changing the subject. I took a sip of my drink and stared across the table into a rainy night, feeling unheard and alone. The conversation continued on without me. Eventually, those friendships drifted apart because I wasn’t interested in the same things as they were anymore, like celebrity gossip or constantly complaining about life’s trite annoyances.
Conversations with family proved to be just as frustrating. After my brother found out my genetic status, he didn’t speak to me for over a year. My phone calls went unreturned even on our birthdays and Christmas. He didn’t know what to say so he didn’t say anything at all. I was deeply wounded by his silence and lack of support at such a devastating time of my life. I tried confessing to my uncle one afternoon when we were alone. “It’s hard living with this knowledge,” I told him. “There is no sense in worrying about the future,” he said with a laugh as he poured himself a drink and walked off.
I kept reaching out for support but people rarely wanted to talk to me about how being gene positive made me feel. Perhaps they couldn’t relate because they never had to face up to a future with illness like I had; their own mortality was something they ignored. I felt more isolated with each person that brushed off my concerns and refused to engage in meaningful conversation. Eventually, I stopped trying to talk to people about it.
Finding a Connection
Then I listened to the Sickboy podcast. They were discussing all of the things I had longed to talk about. These guys get it! I thought to myself. Each episode they interviewed someone living with a different condition. They were openly talking about disease, pain and death, and they did so with an open mind and a willingness to learn. They had discussions about the scary stuff but with a positive spin. They were joking around, taking some of the power and fear away from disease — they were normalizing illness. Among their oftentimes edgy jokes, they would discuss deeper topics like transcendence or the purpose of life. As Taylor eloquently stated in the episode titled, “The Parachute DID NOT Open – Skydiving Accident”:
…the hardship that someone faces, whether it is an injury or illness, is commonly a gift because it shows them the impermanence of life, which then leads to freedom to make the choices that work for you and that allow you to be yourself and be authentic more of the time.
Every one of their guests lives full lives despite their conditions. For the past 10 years, I had been rejecting the societal message that illness is the end of a happy and productive life. I had been actively crafting my own view of what I want my life with illness to look like. I more recently started rejecting the notion that I should stay silent because the people in my life didn’t want to talk about it. The guests on Sickboy are living proof that all of that is possible.
After the live taping of the podcast wrapped up that night, Jeremie announced they would be hanging out at the bar for a while if anyone wanted to say hi. I turned to my husband and said, “I am going to go talk to them.” I knew I would regret it if I didn’t. I felt like a giddy school girl at a boy band concert. I stepped outside of my comfort zone and spoke to each of them while my husband patiently waited in the background and snapped a few grainy photographs. I started the conversation by saying the same thing to each of them: “I just wanted to say thank you. Your show makes me feel like less of an outsider.” The words caught in my throat each time. Taylor was warm and kind. I felt comforted in his presence, like someone I had known a long time. He thanked me and gave me a hug as we finished speaking. Jeremie said, “Thank you, that is why we are doing this.” He listened intently as I spoke to him about HD and how it has affected my life. He kept crouching down so he was at my eye level. I also told him I was infertile to which he exclaimed, “That’s amazing!” With that comment, I knew he instantly understood the complexities of reproducing when you are a carrier of a genetic disease. When I spoke to Brian he never broke eye contact with me the entire time. I talked to him about my situation and he offered advice and pointed to Jeremie, who is living with cystic fibrosis, as an inspiration for living a full life. Speaking to each of them was an intense experience. They never looked off to the lineup of people behind me waiting for their attention. They listened to what I had to say, and they responded kindly and thoughtfully. I had finally found the connection I had been searching for. They made me feel like less of an outsider, they made me feel understood. It is an experience I will hold onto for a long time.
Living Life My Way
It has only been in the past two years that I have started breaking my silence about HD. When I joined a new running group I told them about my genetic status shortly after meeting them because I didn’t want to live in secrecy anymore. For the last year and a half, I have been spending my evenings writing a book about genetic testing, infertility and coming to terms with a future that includes sickness. I am dedicating so much time to putting my experiences on paper because I know it will help someone, just as Sickboy has helped me. I also hope to share my story as a guest on their podcast. Doing these things helps me change the narrative around my own disease. It is how I am embracing the gift that HD has given me. I no longer want to stay silent. I do not want to dread my future. With each passing day, I am becoming more open and vocal. I want to talk about it. I am going to talk about it. I am not going to be embarrassed or ashamed that I am going to get HD. I am grateful to Sickboy for creating a positive space for these conversations to take place. I am thankful to Taylor, Jeremie and Brian for helping confirm that my desire to live fully not only makes sense, it is entirely attainable.