I always took pride in being alone, and I still do, to some extent. That makes letting go of being alone, even just a little bit, feel so strange.
What does “taking pride in being alone” even mean? My rare disease, Friedreich’s ataxia (FA), was probably the main reason I began turning away from others.
Instead of recognizing my body’s neuromuscular degeneration when FA’s symptoms began appearing, I described myself with words like “awkward” and “clumsy.” That negative self-talk yielded a predictable result: I grew ashamed of myself. I learned to retreat from kindhearted friends and family, and instead wallowed in my shame alone. Aside from a handful of close friends, I believed the best way to get through life was on my own.
As a result, I spent most of my life retreating further and further away from the crowds. Although I am privileged to have a supportive family, my tendency to be by myself was obvious throughout my teenage years.
As I grew, I recognized a tragic beauty in loneliness. Only those familiar with loneliness recognize how comforting it can become. Aside from being a quiet comfort, we can truly discover who we are in the stillness of isolation. We decide if loneliness makes us bitter or strengthens our character.
Others, especially those with irregular health issues, can probably relate to this. Others leave us alone, because our health situation is uncomfortable for them, and we learn to adapt in our solitude. We tell ourselves we prefer to be on our own until that statement becomes true.
Though at first I retreated into aloneness because I was ashamed of myself, I learned to cherish it. Isolation was a warm blanket I eventually longed for.
So, I came to take pride in it. This tendency was fueled by teenage angst set to a punk-pop soundtrack.
(As a trained counselor, I wonder if this is what Stockholm syndrome, the concept of falling in love with your captors, looks like. But that is a column for another day.)
For most of my life, I found peace in seclusion. The decision to rely on those around me, rather than just myself, came gradually and slowly. I began to realize I mistook isolation for independence.
I blame Friedreich’s ataxia for my inclination toward aloneness. It is the greatest irony, then, that FA caused me to realize my mistake and taught me to rely on others.
Ron Bartek, co-founder and president of the Friedriech’s Ataxia Research Alliance (FARA), has a popular saying: “Alone, there is very little we can accomplish, but together, there is nothing we will not accomplish.” This has become an unofficial motto for FARA. As the statement implies, one person trying to raise awareness of a rare disease doesn’t seem to affect change, but a group of individuals with the same message is much more powerful. This idea was central to the formation of FARA, as I wrote about here.
I realize now that Bartek’s notable statement doesn’t end with FA or rare disease advocacy. Working alongside others is essential in all areas of life. I was pretty haughty to think I could handle everything on my own, or that I knew best and didn’t need others.
After years of contently living alone in most aspects of life, I decided to make a change. I wanted to see if being less alone would make me happier, less frustrated, and a better person.
To my surprise, I think it is starting to have that effect.
These days, I try to surround myself with people who have much to teach me, people I look up to in some way. Yet, I still find a lot of beauty in quiet, reflective times.
I think this balance is the goal — being neither totally independent nor co-dependent.
I used to believe that every person was either surrounded by others or alone all the time. I’m learning nuance as I grow older: Sometimes the life of the party yearns for a quiet evening at home, and sometimes the content outcast just wants to be invited to the party.
As for me, I’m not as totally “on my own” at 35 as my spiky-haired teenage self would have liked. I surround myself with a team of healthcare providers, friends, and family — each with something to teach me, and each helping me become a better person.
There is beauty in being alone, but it’s not for me anymore.
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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