"A Seat at the Table"

Rachel and Ducklings crop

Before being diagnosed with ALS at age 28, Rachel Doboga loved her job teaching 5th grade English. Now, she advocates for a cure for ALS and writes stories on her blog, “How I Live Now: Life With ALS.”  Through her writing, she hopes to increase ALS awareness and create a community for other people with ALS and their loved ones.

My parents and I live very far apart, but we visit as often as possible. Earlier in my disease, our reunions were more normal: catching up, visiting favorite restaurants, hanging out at the bookstore. We did the things we have always done when we got together. Now, one year after being diagnosed and two years into this disease, it’s getting harder to forget I am sick.

My mom recently came to stay for a week (it was my dad’s turn to stay home and care for my grandma). Seeing my mom reminded me that I am changing. When she visits, there is always a lot for her to learn: the new way to help me dress, which silverware I can handle, what medicine I take at night. The list goes on. My regular caregivers, my sister Laura and my husband Evan, swoop in, explaining so much I didn't even realize they thought about:

"When she says she's thirsty, you have to grab the pillow under her feet so she can sit straight up. That way she won't choke," Laura says, pulling the pillow away and handing me my water.

"Hold the glass for her between sips so her wrists don't get tired," Evan adds, taking the water from my hands while I swallow.

They must be thinking constantly about my needs. I can look at either of them and when our eyes meet, they burst into action, knowing automatically what I am silently asking. It is amazing, but it can't be easy and watching them train my mom, I keep wishing I didn't need so much, didn't change so much. My mom is clearly overwhelmed, often on the verge of tears as she learns to feed her 29-year-old daughter pills in yogurt, but she never quits. We can’t quit, so we don’t.

Stepping outside these painful moments and looking at the big picture (which, despite ALS, I still believe exists), I know I need to be here. The care I am getting is perfect for me, and I am so lucky to have the support of my clinic. Every visit with the doctors and ALS Association care experts leaves me feeling uplifted and hopeful. It is still hard to be away from my parents, but it's easier when I think of this time apart as an investment. I will live longer and ultimately have more years with them because of the research and trials I participate in and the care I receive here. I truly believe I could even survive this.

Watching my mom learn to take care of me as though I am a very strange kind of infant will never feel OK. Neither will seeing my sister and husband throw so much of their time and energy at my healthcare. I have to believe, though, as they all work together, that the distance and effort will be repaid one day by my presence at their dinner table when we all have grown old, just like we hoped and planned long before we ever heard of ALS.

To read more of Rachel's writing, visit her blog, “How I Live Now: Life With ALS.

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