Find Your People
Walking out of the neurologist’s office on a mild March day, I did not fully comprehend the details of what I had just been told but the gravity of the situation was clear. In a moment like this, it feels like everything around you should have changed. Of course, nothing has. The sun is still shining. The same goes for a few hours later, when I found myself on my bedroom floor googling: ALS, Motor Neuron Disease, Stephen Hawking…the future that I had imagined for myself, that I had taken for granted, evaporated. Yet, of course, my apartment still looked the same. Learning that some aspect of your life is suddenly, fundamentally different from that of those around you is isolating. With ALS, this feeling is exponential.
For a while, I chose to navigate this disease on my own. This is not to say that I didn’t consult specialists, my family and friends being supportive through everything, but I didn’t venture into the ALS community because I wasn’t ready to see what lay ahead. The few searches that I did do predominantly portrayed older men with the disease. I found articles on trying to explain such a diagnosis to your children or your grandchildren, on dealing with the grief of having to retire a few years early — incredibly difficult obstacles but ones that did not apply to me. Yes, these articles referred to a diagnosis identical to my own but I couldn’t really relate. I was twenty-six and still a student. I loved my boyfriend but was in no rush to get married and start a family; my career was just beginning. For me, it was easiest to focus on my life and everything that I could still do. I remained relatively ignorant of what this disease might mean for me later on, but the divide between myself and others continued to widen anytime certain topics came up. My feelings of isolation grew stronger.
In time, I became more accepting of my diagnosis. I realized that as much as friends and family were eager to help, they would never be able to fully understand the trauma of receiving a terminal diagnosis, of having your future look so grim. I needed to find other women that I could really relate to. ALS isn’t actually that rare, and the stereotype that it is an old white man’s disease is certainly incorrect — there had to be someone else out there who looked like me and was also facing this beast. Someone who understood the struggle of not being able to fit foot braces into heels, of trying to do your hair and makeup when you can no longer hold up your arms, of dealing with your period when your hands are no longer strong enough to manipulate a tampon, of realizing that your body isn’t strong enough to be pregnant…
Thanks to a social worker at Columbia Medical and the support of I AM ALS, I slowly became connected with other young women facing this disease. There was something uniquely comforting in finding these women, and I no longer felt so alone.
For years, my favorite quotation has been from Audrey Hepburn, “The best thing to hold onto in life is each other.” Human connection is the essence of life. We need others to make our days easier, more fulfilling and happier. Some of us may have friends and family who we have been close with for decades, but at different phases in life, we need new connections, too. People who understand a new passion or unexpected challenge, and who reflect the different facets of our identity. These connections can only make life better. Finding your people can only make life better.
In the spring of 2021, I founded Her ALS Story to help minimize feelings of isolation for myself and others with a similar prognosis; to find my people. Today, Her ALS Story regroups over 40 women diagnosed under 35 to both build a network for us to lean into and build a platform to use our energy to raise awareness and help accelerate the path towards better, more accessible treatment options. These women exemplify what it is like to continue living despite ALS. They have answers and solutions to obstacles that arise, (pALS, seriously, check out https://heralsstory.org/hacks for recommendations from HAS members which can make your life easier). These women inspire me everyday. They are badass! I wish that I had found them sooner but I am so grateful to have them today. I am proud of what we have built and believe that we can, and are, making this difficult journey a little bit easier for each other.