ONCE UPON A GENE - EPISODE 052 - Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story
Adam “DadVocate” Johnson is a dad, diagnosed with Mitochondrial Myopathy. He blogs about his rare diseased story, grief and experience on his blog, Owning My Story.
EPISODE HIGHLIGHTS
How did you come to be a part of the rare disease community?
When I was thinking I was a typical, healthy 35 year old, I got the flu that turned into pneumonia and bronchitis. I wanted to get back into self-care and working out and feeling better after that and I made a good push. I noticed during my workouts that I was struggling to push on. I knew something wasn't quite right. I had my first fall and knew I couldn't ignore what was going on any longer and that began a series of appointments seeing doctors and specialists. No results were populating red flags, but I was extremely fatigued and kept falling. A doctor did a muscle biopsy and that turned up a diagnosis of Mitochondrial Myopathy.
Why did it take so long to get the test needed to get diagnosed with Mitochondrial Myopathy?
Mitochondrial disease is difficult to diagnose and can take some time. After I was diagnosed, I found a support group and shared my journey. So many others in the support group shared the same experience and even went years before receiving a diagnosis. It's such a rare disease that it's not widely known and doctors don't have experience with it.
Have you found a lot of other parents that have a rare disease?
I'm still looking, but I've appreciated the support I've received from so many in the rare disease community. I notice a lot of groups of rare disease patients of rare disease kids, but I haven't found a group of parents with rare disease. I'm continuing to branch out and make those connections in this very specific niche. I'd like to talk to others who have had similar experiences. I have pretty specific worries and concerns that I want to connect with others on.
What are some of the moments that help you persevere when you're feeling defeated?
My kids help me smile and push ahead. When I first received my diagnosis, my daughter was doing a science project in school on the human body. She wanted to choose mitochondria. I felt bad in the moment, but it was her moment to explore, learn, grieve and share with her classmates. That helped me push through and persevere because she made me feel like I had my own little advocate by my side. People in the rare disease community have been instrumental as well. I listened to the podcast episode with Taylor Kane and I connected with it so much. I'm appreciative of my family and others in the community that help me move forward.
What has your family changed since you were diagnosed?
It's changed a lot. It was a transition for me stepping back from work. The pandemic is adding an additional layer to things. It's a lot to go through for me and my family as I try to balance being home, being present and helping while taking care of myself. Before the pandemic, I was struggling to take care of myself and now it's an additional stress that's altered things quite a bit. A big thing is that I can't participate in things with the kids in a way that I could before. I found Brian Wallach on Twitter, was scrolling through and saw a tweet that read, "I just watched our girls roll down a hill giggling like crazy. A year ago I was rolling with them. A part of me seethed at the progression of my ALS and what it has taken away. Another smiled like a maniac, giggling as loud as our girls, grateful to be there." I felt that so much and I really connected with that. The paradox of balancing the loss and being present while trying to enjoy a moment is a challenge sometimes.
What lessons have you learned that you can share with others who are feeling alone as a parent with a rare disease diagnosis?
I wish I had known when I was diagnosed that I wasn't the only one. I wish I understood that there was more to come after the diagnosis. It's still difficult when I think of things in the past and miss doing things, or miss my job. These things remain true, but I can move forward and find new things to do. If you're newly diagnosed, you're not alone. Any disease or challenge that comes up doesn't define you and it's not the end of you.
LINKS AND RESOURCES MENTIONED
David Kessler and Brené on Grief and Finding Meaning
Dr. Marc Brackett and Brené on "Permission to Feel"
It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand
CONNECT WITH ADAM JOHNSON
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS