An Act of Empowerment

By Gavin Marcus

As a 19-year-old, my way of dealing with my diagnosis was simply to ignore it. I initially saw LDS as a weakness - a loss of freedom and an unsettling reminder of my Dad’s passing (he passed in 1987 and was posthumously diagnosed with LDS in 2006). So, I ignored it. It wasn’t until 4 years later, in 2009, after the first of three open-heart surgeries, that I started to proactively learn about LDS. Through engaging with the LDS community, meeting other patients and hearing their stories, I realized how accepting one's situation was not a weakness. Rather it's an act of empowerment.

After accepting that there's always going to be complications down the road, I found that my world didn’t grow smaller like I feared it would. Instead, it expanded. How I chose to overcome these ‘bumps in the road’ have defined who I have become: when I had to give up sports, I took up learning languages and photography; when I had to take 4-6 months out of work for each operation, I volunteered with local communities. I am now living in China, spending my time outside of work helping build communities that support vulnerable people in society. Including the LDS China community (where we have connected over 10 people now!). Life is not defined by the adversity we face, rather, its how we overcome it that's important.

LDS has also taught me the importance of community and helping others. I wouldn’t be here if it wasn’t for the help and goodwill of other people. Therefore, I try to give back what I can by living a life serving others. We are stronger as a community.

There are times when I feel vulnerable. Times when the pain can be overpowering. I am learning to set better limits and to slow down when needed. It’s a continuous learning process. But uncertainty no longer unsettles me, rather it inspires me to live purposefully and with intentionally. Accepting the uncertainty of tomorrow has inspired an urgency to focus on the present moment.

If I could give one piece of advice to families and friends of LDS patients, it would be just to read and learn about it. The times I have felt most supported is when a friend or family member throws out an “LDS fact” or mentions what reading they’ve done. I love it. It makes me feel supported.

And on that note, to everyone who has helped me over the years, thank you. This positive attitude of mine is a reflection and an expression of the love, care and support you and others have given me.