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Volunteerism and Primary Immunodeficiency

By William Hindin, IDF Volunteer

A number of years ago, I was the pianist/entertainer on a luxury train, which offered one-week trips across the country, like a cruise. I played, sang and entertained the guests every night before and after dinner.

On one trip, a little elderly lady would sit next to me after dinner and we would chat. She would request “Memory” from the musical CATS, sometimes several times a night. Now, I must tell you that most musicians just hate that song (don’t ask why) and every time she would request it, I would roll my eyes, grit my teeth and reluctantly play the song for her.

On the final night of the trip, there was a cocktail party for the guests, and when everyone was present, this little lady got everyone’s attention. She proceeded to thank us for the wonderful week and explain that she was terminally ill with a short time to live. She told us that we had made her last trip of her life so very pleasurable and wonderful. Needless to say, this stunned us all, as we had no idea what she was facing.

IDF Volunteer William Hindin is dedicated to promoting primary immunodeficiency awareness, including requesting and receiving a proclamation from New York City Mayor Michael Bloomberg, declaring April 2013 to officially be National Primary Immunodeficiency Awareness Month in NYC.

That lady changed my life; suddenly, it became crystal clear to me that playing a song that I didn’t like was very special to her, and gave her some pleasure for the last chapter of her life. I learned that one never knows how something inconsequential to us—a word, a touch, a song—can have deep meaning to another. We can change the lives of others with the simplest of actions. We never know the back-story of others’ lives. That lady, long since gone, gave me a gift that will last me the rest of my life: to know that we can change a life in ways that we may not know, but sometimes something that seems unimportant to us can affect someone’s life for the better. I realized that what we do is not always about us; it is about how we affect others’ lives.

When I was receiving IVIG infusions in 2004, I would often sit next to a woman named “Christy,” who became a friend. I was amazed because Christy told me harrowing stories of her hospitalizations, often for weeks at a time. She was truly a fighter and her treatments served to keep her healthy for stretches, and well enough to fight through the hospitalizations. They kept her healthy enough to be sick and not succumb to complications from primary immunodeficiency disease. Remarkably, never...ever did she complain; her unyielding optimism was an inspiration.

Christy taught me that self-pity and complaining would do nothing to help the quality of her life. If she chose that route, after all of the agitation, she was still in the same place as when she started. It would be an exercise in futility, wasting time and energy. I believe that a constructive, positive attitude is the correct philosophy for people in our situation. It is a choice that we can only make for ourselves.

I also believe that we can draw inspiration and guidance from David Vetter and his mother, Carol Ann Demaret. David did not want to live his life in a bubble, in a literal cage. I think his situation and choice teach us not to live our lives in a metaphorical box. We can choose to let this disease own us, or we can choose to own this disease and make choices to live fuller, more productive lives. Primary immunodeficiency disease is a part of us, but it is not who we are. I cannot and will not let this disease define my life or me. Carol Ann has chosen to dedicate her life to support us, so that other persons who have primary immunodeficiency disease can live their lives outside of the constraints of the disease. She has taken her heartbreaking story and made it into something positive. What an inspirational person!

I believe in the concept of “paying it forward.” In the case of patients with primary immunodeficiency diseases, one of the best ways to thank and pay back others such as the Immune Deficiency Foundation (IDF) who have helped us is to help others and make their lives better. One of the highest forms of service to others is volunteerism: to help make others’ lives better for no reason other than it is the right thing to do, like Carol Ann has done.

Helping others, make us feel better.

Those of us with primary immunodeficiency disease have a choice: We can play the role of the victim, asking, “Why me? Why did I have to suffer from this disease?” I have seen many people wallow in their circumstances and make themselves and others around them miserable, and when all is said and done, they are no better off. I believe that we can consider our affliction an opportunity. It is an opportunity to help others and make their lives better. To become empowered by our disease is to have a focus and reason to deal with our situation positively. We can pay it forward. It doesn’t take much; a kind word, a simple action; just like I learned from that lady on the train.

If you can help others, you can’t help helping yourself.

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Such an amazing story. So inspirational! Thanks for all you do Bill!