Two years ago today I had a stroke.
I wanted to write something thoughtful about that experience, about all the trauma and tragedy and loss that has come our way in life and about how, even though I had a stroke at 34 years old and not even 18 months later my 37-year-old husband was diagnosed with ALS, we are doing our best to face it all with love and positivity.
But eloquence is eluding me, and all I can come up with is this — it’s really fucking unfair.
During our darkest days last June, our son had baseball practice. Because even if your heart has been ripped from your chest, your kids still have school and sports and you still have to feed them and do laundry.
Chris was an assistant coach and could still grip a ball well enough to play, and we were working so hard to not let the kids know what was going on. So with bloodshot eyes we put the kids in the car and headed to the practice.
I walked Willa to the playground beyond the ball diamond and pushed her on the swings. I looked at the field where Chris was throwing batting practice and my throat tightened. I told Willa I wanted to watch her brother and walked a few steps away.
I looked up. On the hill overlooking the park was the hospital. From where I was standing I could see the wing where I spent the six days after my stroke.
I texted my mom.
“I’m taking a video of Chris throwing batting practice to Cohen because it’s probably the last time he will be able to, and in the background is the hospital and I can see the stroke unit. What did I do in a previous life to deserve all this?”
I turned my back to where Willa was climbing and swinging and going down slides so she couldn’t see the tears pouring down my cheeks.
Last night we watched “A Beautiful Day in the Neighbourhood,” in which Tom Hanks plays Mister Rogers. In one scene he is talking about death. He says death is the most human thing there is, and that anything human is mentionable and anything mentionable is manageable.
I cried. I know that in this space — where I write about being scared and sad and hopeful and worried — that’s what I’m doing, mentioning it all so that it’s more manageable.
I know my experiences aren’t unique. I know that because of so many others who talk about their tragedies and share their trauma. And I try to remind myself that because those people have survived unimaginable heartache and loss, if I ever lost Chris I would be able to survive, too, no matter how unfathomable it feels now.
Still, some days it just feels so unfair.
Last night, as I stared at my computer screen with the cursor blinking back at me, knowing I wanted to write but not knowing what, I went back and read a post I wrote on the final day of 2018, the year I had my stroke.
I had written about how, just a few months after my stroke, Chris’ dad told us he had ALS and how he died a few months later. I wrote about Chris’ family history. And then I wrote, “When I think about this, about the very real possibility of losing my husband to this disease, I cannot breathe. I cannot find a way to get air into my lungs.”
Six months later Chris was diagnosed with ALS. I had unwittingly foreshadowed my worst nightmare. And I have grown very used to that feeling of breathlessness.
I kept reading and, it turns out, I knew then the message I would need to keep going.
“Life,” I wrote, “is heartbreaking.”
“The weight of loving people with your whole self often feels crushing. Because you treasure them, and in a blink they could be gone. Our kids, our partners, our friends, our family.
“But life is also so beautiful and so complex. And what I know now is that all the pain makes you love harder. It makes the colours richer and the sun brighter and getting up at 5:40 in the morning to go to the gym feel like the most amazing gift because you can — your body can do it, and it feels like a miracle to be strong and capable and healthy.
“And I realize, now, that I’ve been drowning these last months in what Brené Brown calls foreboding joy — the constant fear and panic rising in your throat, telling you that all the good things in your life are going to be snatched away any second. And you are filled with so much anxiety about losing your joy that you can’t experience it.
“Foreboding joy is hard to fend off. It’s why during the holiday season as I watched my gleeful, beautiful, healthy children bask in the magic and wonder of Christmas, I had to fight back that fear, that overwhelming urge to grab them and hold them and never let them go because I’m terrified of losing them. It’s why I struggled to be present. It’s why I cried. It’s why I pushed my husband away instead of telling him how I actually feel — that I am terrified he will die.
“And then yesterday I was at the gym, where I had retreated after I’d gotten upset with my husband about something and found myself incapable of enjoying my kids’ squeals and giggles as they played games with each other on the living room rug. And I was running at 9 miles per hour on the treadmill. And my legs — legs that needed a walker and a cane in March — didn’t buckle.
“And I felt so grateful. Not scared. Not worried. Not anxious. Just grateful.
“And then I thought about how my little girl curls up against me in bed, one of her legs thrown over my back, about her face when I bounced her up and down on the seesaw at the playground the day before after watching my son toss his hockey stick down in the middle of the ice and join a pick up game at the neighbourhood rink, about him high-fiving his dad after he scored a goal, about how the sun hit the ice and the air filled my lungs and how the breeze felt on my face as I stood there and watched.
“About how I felt alive and at peace, even in the midst of all the sadness that sometimes feels capable of swallowing me whole.
“I know foreboding joy will always be there, lurking. I know it will rise up, and I will feel overwhelmed again by all the things I have to lose. But my resolution for this next year is to keep fighting it off, to never give up, to hold close to my heart all the love in and around me, because, really, the beautiful thing here is how much of that there is.”
Two years ago today I could have died, but I didn’t. Nine months ago, my husband was given 12 months to live, but last night he lowered himself to the living room rug and did five pushups with ease.
Life doesn’t stop coming at you, and no one is keeping score of how much sadness and loss you’ve had to endure. A stroke at 34 and ALS at 37 is really fucking unfair, but wallowing in the injustices of life won’t get me anywhere.
It doesn’t mean I don’t feel angry at times.
It doesn’t mean that in those first weeks after Chris was diagnosed I didn’t wait until the house was empty so I could scream at the top of my lungs until my throat hurt and I fell on the floor crying.
It just means that, afterward, I got up.