The Power of Friendships in Life With Friedreich’s Ataxia

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by Sean Baumstark |

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I can’t exactly put my finger on why, but for a long time, I thought success had to do with how many friends I had. How many of them called me by name and went out of their way to say hello at social gatherings was important to me. But as flattering as that is, I’m finding more and more fulfillment in the depth and sincerity of those who know and love me, even if it’s just a handful of people.

I’ve always been a social butterfly and never shy away from introducing myself to strangers. My dad never missed an opportunity to tell a ridiculous joke while interacting with employees at the grocery store or the dry cleaners, and my mom seems to be friends with everyone. I suppose I learned to be comfortable around people by observing them.

I can’t say I was ever a popular person, but in college, I did serve as the student body president at a small, private school. Many were at least familiar with me. After school, I made friends quickly while working at a resort in Germany, where I met one of my best friends.

For several years, I was a well-known staff member at a large church and a private school, and part of my job was to ensure that employees stayed connected to our mission. Although I have a completely different career today, my current job requires that I meet almost every new hire and help them acclimate to our company culture.

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In a sense, I’m a professional social butterfly today. I make my living by meeting and connecting with people I’ve never met before.

If you’d asked me 15 years ago, I would’ve said I had many friends, and I was convinced those friendships would withstand any disagreement or argument. However, there was a time I felt like I had disappointed everyone I knew, and I found myself with few friends and the need to rebuild my social circle. Likewise, if you ask me today, I’d admit that I have fewer friends than 15 years ago, but my friendships are richer and deeper than ever before.

Perhaps such reflections are common as I age, or maybe the progressive and devastating nature of Friedreich’s ataxia (FA) causes me to evaluate what’s essential to my fulfillment and joy in life.

It’s no secret that my mobility has become noticeably worse in the last couple of years. Whenever I lose my balance and experience a close call with falling, I often think about experiencing another dramatic bone break or something permanent. In the aftermath of these moments, I tend to wonder if I’m doing everything I can to preserve the quality of my life. Some of my friends and family might argue that I take too many risks.

However, the people in my life today are the first to jump over and catch me when I stumble. They grab my drink when it’s time to move from the bar to the dinner table and go ahead of me to ensure accessibility when we’re in public.

I celebrated a friend’s birthday tonight, along with 18 members of her family and close friends. One of those friends, Tony, is someone I’ve connected well with, but only see a few times a year when the group gets together. I stood up to use the restroom at one point during the meal, and Tony was sitting at the other end of a long table. He made his way to me long before I could get to my walker and yelled, “Hey!” while holding his arm up and gesturing for me to hang on. He walked me through the busy restaurant to the bathroom.

I assumed the timing was convenient and he needed to use the restroom, but that wasn’t the case. Instead, he led me to the door and asked, “Are you good from here? If so, I’ll wait right here for you.” It turns out he stood up because I stood up.

My circle of friends may be small, but I do not doubt that I’m important to them, and my life is richer because of how my friends and family members love me.

Living with FA is nothing exciting, but I find value and significance in my life because of the people surrounding me.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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