“My mom, Rosa, didn’t tell me when she first got diagnosed with ALS. I was a teenager, and I think she wanted to protect me from worry, knowing she couldn’t protect me from loss. She always wanted me to feel safe. I noticed the changes, though. She started having pains in her lower back and hips. She started walking with a cane. One summer day, while we were on our way out of the house, her legs buckled out of nowhere and she fell. It shocked me completely. At that point, I realized that maybe there was something going on with my mom’s health that couldn’t be fixed.
By the time I started university, she was in a wheelchair. My mom had a lot of support from family and friends, but I was still very aware of how much she needed me. We talked on the phone all the time, and I noticed her voice changing as speaking became harder for her. And every weekend, when I came home to visit and help, she would look different. It was so hard to see and hear her changing so quickly. When she finally told me it was ALS, I said I was going to take a break from university to care for her, but she wouldn’t have it. She said there was no way I was giving up any part of my future because of her.
Soon after, she lost her voice completely. For a little while she could still communicate through a computer or by moving her fingers on a word board. She lost that as well, though, as the disease completely immobilized her. She could still move her eyes, but she couldn’t control the muscles around them even to blink. My mom had the kindest eyes and I could always read her love in them. In those last months, we spent so much time looking into each other’s eyes, communicating in a language born of such closeness that words were unnecessary. I let her know that I always wanted her to feel safe, even though I couldn’t protect her from ALS.
My mom passed away on May 23, 2020. I was 23. I woke from a deep sleep, sobbing, somehow knowing before I even got the call that the world had become a darker place. But, in that sadness, there was also a sense of relief that her years of suffering were over. That she didn’t have to be so strong for me anymore.
I knew ALS was going to kill my mom. With a disease like this, the grieving begins while your loved one is still alive. And so, I felt like I had time to prepare. As a human, you can’t help but try to prepare. Each time my phone rang, I’d prepare myself and say: ‘If this is the call, I’m ready.’
When the call came, I wasn’t ready at all. I was overwhelmed with emotions I had never anticipated and didn’t know how to process. I was 23 years old, my mom was gone, and I didn’t know what I was allowed to feel. I started to write down everything. I was suddenly terrified that I would forget who my mother was.
My mom had a smile that lit up every room she was in. When I summon an image of her in my mind, it’s always that smile I see first. I see her as she was when I was 10 years old, before she got sick. I see her strong and independent and full of empathy, dead-set on raising me to embody those qualities as well. And I remember also how, even as her health declined, she was always so present for me.
I have this big box of cards my mom wrote for me. Birthday cards, but also notes that she would give me on random days just because I was struggling or feeling down. Every one of them is inscribed with a long, heartfelt message. When I’m having a bad day, I sit in my bedroom and read through them all. I watch her handwriting slowly change as ALS robbed her of her strength, until it became illegible. The later cards are in a different handwriting altogether, as she started dictating the messages to friends. I allow myself to cry.
Grief has changed me. I’m not the same person I was the day my mother died. I can’t ever put her loss behind me, but I try to keep moving forwards, keep reaching for strength and compassion, knowing that’s who my mom raised me to be. The biggest piece of grief that I’ll always carry with me is the knowledge that my future children will never get to have this amazing woman in their lives. They don’t even exist yet, but I’m so sad for them, for what they’re missing out on. My mom, Rosa, would have been the most amazing grandmother.”
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