I am Rachel Doboga
living with ALS
I came to see that in my mind, I am free. It is the one part of me that ALS can't tame. My mind is a mighty force, it's own universe apart from my disease.
When I was diagnosed with ALS at age 28 in 2015, I felt like I lost everything. My body, without warning or reason, turned on me, and that meant the end of so much. My teaching career and dreams of motherhood and growing old with my husband were all swept away like sand when I believed they were stone. These major losses hit me fast. The other, less obvious ones, crept in slowly, adding weight to my chest one suffocating ounce at a time.
If I heard a song I liked on the radio, I would move to dance before remembering that my feet had grown dangerously heavy and clumsy. I used to enjoy any activity that involved rhythm, particularly hip hop dance and zumba. I also loved going on adventures with my husband. We canoed, hiked, and hunted for fossils. Before losing my voice, I spoke French and a decent amount of Russian. I was passionate about languages, and now the work I started in sixth grade and continued through undergrad would be for nothing.
My perspective changed a year after my diagnosis when ALS Awareness Month rolled around. My family was working hard, fundraising and sharing facts about ALS on social media. Meanwhile, I did nothing. My guilt over leaving the fight to my loved ones spurred me to action. My mom had been encouraging me to write about ALS since my diagnosis, knowing instinctively in the way mothers do that using this lifelong passion would allow me to process and cope with my struggle. I wasn’t so sure; I hated even thinking about ALS, so how could spending time committing my thoughts and feelings to paper make me feel better?
Still, I must have known on some level that she was right because I decided to contribute to ALS Awareness Month by writing a short post on Facebook each day describing an experience in my new normal. I imagined a few quick sentences would be adequate. However, much to my surprise, the first post I wrote was several paragraphs long. Once I started telling the story of how I was too uncomfortable to sleep, I couldn’t stop. I wrote for an hour about the feeling of helplessness that weighed on me when I first realized that I was too weak to roll over or adjust my blankets and the gut wrenching guilt of having to wake my husband up every few hours to reposition me. By the time I clicked “share” my mind was buzzing with ideas for what I would write tomorrow. That night, I went to bed happy.
My daily posts quickly turned into a blog. For the first time since my diagnosis, I felt exhilarated and full of purpose. I came to see that in my mind, I am free. It is the one part of me that ALS can’t tame. My mind is a mighty force, it’s own universe apart from my disease. Lighting storms between firing neurons create constellations of thought and galaxies of feeling. Ideas dart like comets across the vast, wild frontier. I know now that I can fight back through my writing, that this is not how my story ends.