COVID-19 kept me from saying goodbye to my grandmother

Sobbing a blubbery and snotty cry while waiting for an elevator was likely my rock-bottom moment in January. I’d just left the interventional radiology department after another stressful procedure at the hospital. Thankfully, it went as easily as it could have, given the difficult situation. But something during the procedure triggered me.

My mom hugged me tight, thinking I was overwhelmed by what I’d just gone through. But I shook my head and just whispered the word “vóvó.” Right away, she knew.

The thrill of a new year and starting things off right never really appealed to me. Unfortunately, the universe took me too literally and made the start of my 2023 incredibly difficult. Health issues popped up. Family received grave diagnoses. Seasonal depression set up camp in my brain. Just as I was barely managing, my grandmother, my vóvó, took a turn for the worse.

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Unfortunately, a contrast injection during a CT scan sent her into kidney failure, and she didn’t want treatment. At 93 years young, she was ready to move on to her next phase. The unexpected news felt like a 200-pound weight on my chest. But the following days were about to become even heavier.

Following her diagnosis, my grandmother was transported to a hospice center, where she spent the remaining days of her life. Her children, grandchildren, and other relatives all stayed by her side. The only people who weren’t able to go were my mom and me.

Because she was in a place where COVID-19 and other illnesses were present, going there would have put me at risk, something I knew she wouldn’t have wanted. The truth is, because of my SMA, I’ve taken more precautions than I care to admit over the past three years. They may be extreme at times, but my health is far more valuable than anything else. I know I’m doing what’s best for me.

Nevertheless, making hard decisions where I give up so much of my life has not been easy.

It seems the world has moved on from the pandemic. Many people now refer to it in the past tense even though it’s still a reality, especially for high-risk individuals like me. I’ve done my best not to let it bother me. I’ve tried to focus on my well-being and not unravel at the state of the world. I’ve adjusted, and I think I’ve done a good job at it. That is, until now.

Navigating loss, grief, and anger

At the time of my writing, my grandmother has been gone for a week. Yet I still harbor so much resentment for something as intangible as the pandemic. I’m angry. I’m so sad. I’ve missed out on so much the past few years and never allowed myself to feel sorry about it. But now I lay my weary head down.

I grieve the times I had to regretfully opt out of an event that posed too much risk. I grieve not having more time with my grandmother, thanks to quarantining and social distancing. I grieve not having a proper goodbye.

I should’ve known my meltdown at the hospital was coming. After all, I’ve had about a dozen procedures. I know the last step is to inject contrast into my body — the same contrast that sent my grandmother into her final days. Though my procedure was successful, it triggered many feelings I’d pent up over the past week. I was simply doing what I’d done all along and trying to stay strong.

At times, I feel as though people don’t understand how difficult it is to miss out on so much due to health reasons, so I typically don’t say anything at all. I know now that I should handle things differently.

Losing a loved one is never easy. Not having the chance to say a proper goodbye only makes it worse. On my grandmother’s last night, my father FaceTimed me from her bedside — something we’d been doing all week. I’m grateful we at least had those moments.

At the time, she was asleep, mostly incoherent, and could barely speak. I wanted nothing more than to reach through the phone and hold her hand peacefully when, suddenly, she opened her eyes wide. Through a glass screen, she looked right into my eyes and found the strength to say the same words she said to me every time we parted ways: “I love you, my darling.”

Those were the last words she ever said to me.

Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.