MDA Ambassador Guest Blog: Pursuing Personal Passion Day by Day
By Thad Dombrowski | Wednesday, January 31, 2024
5 Second Summary
MDA Ambassadors play an essential role in furthering MDA’s mission while representing and empowering the neuromuscular disease community. Quest Ambassador Guest Blog series provides a platform to share their personal stories, perspectives, and experience.
Diagnosed with myotonic muscular dystrophy in adulthood, Thad is passionate about nature and exploring all that North Carolina has to offer. His newest project is cultivating mushrooms.
Sixteen years ago, I decided to fulfill a personal ambition of mine by writing a book. As an avid reader, I wanted to create and share something of my own with the reading community. I had no idea how to write a book, but I planned to figure it out. I started by developing writing habits.
At the time, my day job was in software development. Every day I set aside time to write. During the work week, I would write for about an hour or two in the evening. Weekends were reserved for longer sessions. After a year of early writing struggles, I finally learned to simply record my thoughts and the events of my day in a journal. This is a practice I keep to this day.
My goal was to write a book. I worked on one for three years, but I was increasingly distracted by my body. Instead of writing fiction, I often spent my journaling time describing the strange symptoms I was experiencing. Something was wrong. Eventually, I reached out to my doctor. Nine months later I was diagnosed with myotonic dystrophy type 2.
Living alone with a neuromuscular condition, journaling became my coping strategy. Before I could address any problems, I needed to put everything on ‘paper.’ Complaints, frustrations, and fears were common themes, and plenty of questions, too. As things got worse, I wondered where this was headed. It was a strange time for me and I found that I had stopped thinking about my future because I was so wrapped up in the here and now.
Within a year of my diagnosis, I had to stop working. That was an especially difficult transition for me because so much of my identity was wrapped up in work. What was I going to do? It was something I thought about as I dealt with the day-to-day struggles of muscular dystrophy.
More years passed. Things stabilized. I stopped worrying obsessively about the situation. I began to look forward again.
There was so much I needed to do. In the span of a few years most of my possessions had become useless to me. The workshop in the garage. My bicycles. My cluttered life. I also needed to be closer to family. Getting rid of things and moving became my new goal. I was trapped and I wanted to be free.
By this point, I was also four years into a new writing project. After my diagnosis, I could no longer work on the story I had been writing. Too much had changed. I wanted to explore things closer to my heart. So, I began to write visions of a bold, new, audacious book in my journal. Something way beyond my abilities, given that I was still trying to figure out how to actually write a book. This project sustained me through some trying times.
In 2016, I left Tempe, Arizona and settled in Chapel Hill, North Carolina, after the elections. As a way to learn the city, I started visiting coffee shops all over town. I enjoy drinking tea, and I love to write surrounded by busy energy. Eventually, I became a regular at a couple of locations and I started to meet people there.
I joined a church. Then I joined a writing group. I also tried volunteering in a community literacy program. Pretty quickly, I overextended myself. So, I cut back my involvement. But that’s okay. I wouldn’t know my limits if I didn’t test them.
Now settled, my life is more routine. I try to enjoy each day. I focus more on relationships with friends and family. But my writing routine hasn’t changed.
Every day, I still write. Every day is its own subject, unless I am having a good day. Then I work on my book. I have been writing this story now for twelve years. That might seem like a long time, but I’ve been told that first books can take a while.
Will I be able to finish this book? Sometimes, I have to ask myself if all this work will have been worth it if I don’t. It’s not a hard question to answer though. Pursuing this goal has given my life meaning and purpose. In the end, I will complete this project, or not. But my happiness does not depend on a specific outcome. Instead, my happiness is rooted in the fact that each day I can still write and enjoy my passion for the project.
Next Steps and Useful Resources
- Learn more about Myotonic Dystrophy type 2 (DM) here.
- MDA’s Resource Center provides support, guidance, and resources for patients and families. Contact the MDA Resource Center at 1-833-ASK-MDA1 or ResourceCenter@mdausa.org
- Stay up-to-date on Quest content! Subscribe to Quest Magazine and Newsletter.
Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.