Two years ago today, my late husband had the massive stroke that left him paralyzed on the left and with a long list of medical concerns. Overnight, he went from being the most energetic and physically strong person I knew to being unable to perform most daily functions on his own. He needed help to dress and bathe himself, to go to the bathroom, to sit or stand or move to a lying down position. His memory was impaired, he was unable to follow conversations, and he was in tremendous pain.
Last year on this day he was still alive. He had just gotten his long-awaited motorized wheelchair a week or so earlier and was excited to have a little more independence through that. That morning when I walked the dogs, Tom showed off his independence by waiting for me to get about a block from the house and then he used his motorized chair to go down the ramp, turn onto the sidewalk, and follow me. I had no idea he was back there. The dog kept glancing behind us, but I was used to the dog being distracted and didn’t check to see what he was turning around to look at. Finally, after a few blocks, I heard something behind me that made me turn around, and there was Tom! It was a huge and beautiful surprise—he had decided to follow me, put his sunglasses on (a serious challenge with only one hand and having to navigate around his helmet), and negotiated his way down the ramp and across two streets. I ran to him and gave him a big hug, and he gave me his usual low-key, “Hey, babe,” as if there was nothing special about what he had done. He followed along for the rest of the walk.
At the time, I thought it was an indication that we were turning the corner on the struggles of his post-stroke life. Eleven days later I would have to make the heartbreaking decision to remove him from life support.
I have been anticipating this strokeversary with dread, unsure of how it would hit me. I am having to remind myself constantly right now to be open to my emotions and my grief. That felt much easier to do a few months ago, and as this strokeversary and the anniversary of his death have gotten closer, I’ve experienced more and more anxiety.
A dear friend texted me a beautiful reframing of the strokeversary. She said
Her reminder of how close and loving Tom and I were in the year between his stroke and death was exactly what I needed. The stroke was horrible and I wish it had never happened, but Tom’s intense care needs and my willingness to provide for them gave us an avenue to trust, love, and intimacy that was incredibly special. We were able to talk about things in the last year that we had been guarded about before. We got to witness each other facing tremendous hardship with love and grace. We were able to be completely vulnerable with each other. I was already madly in love with Tom when he had the stroke, and my love bloomed exponentially after that. Seeing him face his challenges with grace and humor every single day inspired me to be my most patient and generous self. My caregiving inspired him to keep fighting through the pain and exhaustion.
This is a tough, sad day, but one that is also full of endless love for my amazing husband. When I see myself through his eyes, it is also a day of compassion for myself. Lately I have focused on what I see as my failings as a caregiver: the times I didn’t know what to do, I wasn’t as patient as I wish I had been, I got frustrated, or I didn’t understand the depth of his pain. I know Tom forgave me for my imperfections and appreciated my effort. I was surprised by how honored I felt to be able to care for him. Having considered myself a selfish person my whole life, I was amazed at how easily caregiving came to me and how fulfilled I felt by it. It allowed me to be fully present for more than a few moments for the first time in my life.
My friend’s text reminds me that I can see this day as a tragic one that led to my husband’s untimely death or as the beginning of the sweetest year of our time together. This is the anniversary of the day when I found out what both Tom and I were made of.