Living with a multisystemic disease such as amyloidosis can present significant challenges, including learning how to navigate daily life within the boundaries of your physical limitations. Often, the most difficult part is coming to terms with a new reality that redefines what you can and cannot do. This is particularly true when exploring new activities and hobbies, which help to restore your sense of purpose and fulfillment.
Discovering new joys
I’ll offer my own story as an example. By the time I was finally diagnosed with hereditary amyloidosis (specifically, the T60A variant of hereditary cardiac transthyretin amyloidosis, or ATTR-CM), the disease had already advanced to the point where I could no longer continue my thirty-year career. The ability to enjoy many of my favorite lifelong hobbies, like playing ice hockey and lifting weights, had withered away. It felt as though my identity had been stripped away, leaving me to wrestle with a new and unfamiliar reality that I struggled to accept.
This really was a low point for me. In time, with the support of my wife and brother, I came to accept my new reality, identifying it as “an opportunity to redefine who I was,” to reinvent myself. I decided to pursue new activities and interests, which have provided me a renewed direction and sense of purpose.
One day I was sitting at my dining room table doodling when the light clicked in my head. “Hey, look at this, I have the ability to draw.” I had always enjoyed mechanical drawing and dabbled in crafts over the years, but had mostly gone through life wrapped up in my career and supporting my family. It made sense that I had an aptitude for drawing, as one of my uncles had done some sketch work for Disney. Well, I quickly got addicted to it, and am now what I would consider to be a reasonably accomplished amateur artist. Most importantly, I find it so gratifying to exercise the creative part of my mind. I’ll share with you a few examples of my work.
Drawing was just the start
To some extent, amyloidosis has impacted my mobility, as I have significant neuropathy in both my legs and arms. Through physical therapy and some trial and error, I’ve identified a few activities that are within my abilities.
I’m able to walk reasonably well on flat terrain, so I make it a point to walk regularly, often joined by my wife and our dogs. We enjoy exploring nearby rail trails and nature paths, which has become a meaningful way for me to stay active and connect with the outdoors. Additionally, with the knowledge gained having gone through physical therapy, I was able to develop a strength training routine using dumbbell weights. This has been especially energizing, as weightlifting is something I’ve enjoyed since my high school years.
Lastly, I saw an opportunity to get involved and help raise awareness about the disease. In 2021, through the nonprofit organization “Amyloidosis Speakers Bureau,” I began traveling across the country, speaking to student groups at medical schools. Since then, I’ve delivered talks at countless events within the rare disease community, sharing my own disease journey and insights. Most recently, I had the opportunity to travel to Ireland to speak at the annual “Amyloidosis Ireland” conference.
How will you reinvent yourself?
When hobbies are thoughtfully matched to personal interests and abilities, they can empower individuals to lead fulfilling leisure lives.
Your potential hobbies or activities could include:
- Creative hobbies such as painting, drawing or photography.
- Physical health activities such as adaptive yoga, adaptive dance or swimming.
- Outdoor activities such as gardening, birdwatching or walking.
- Intellectual activities such as taking a course, reading and writing.
- Social activities such as engaging with support groups or interest clubs, or volunteering.
Exploring new activities has allowed me so many great experiences and has certainly given me a renewed sense of purpose. My hope is that, in some small way, this article offers inspiration to you as you navigate your own path.
I’ll leave you with a quote I ran across a short time ago that has deeply resonated with me:
“It is not a failure to readjust my sails to fit the waters I find myself in.”
— Mackenzie Lee
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