Over the summer I went to my first writers workshop. While talking to a fellow writer, a woman around my same age, an author who wrote children’s books, we got to chatting and asking each other the typical get-to-know-you questions. But when you’re at a writing conference it usually starts with, “So what do you write?”
I answered shyly, still uncomfortable with this question. What do I write about? How can I put it into words? I don’t have a particular genre. And then the corniness came out: “I just like to write about inspirational things. Sometimes it’s people I have met and learned from, people who have inspired me; or sometimes it’s my own personal experiences. But eventually my goal is to write a memoir.”
She looked at me with surprise, the usual surprise I get from people when I tell people this is my ultimate life goal. I usually guess what the person is thinking when I tell them this: “Of course, some young 30-year-old wants to write a memoir about her life. How cliché. I mean really what has she gone through at the age of 30, that she wants to write a whole book about it?”
“Oh, really?” she continued. “What about?”
“I have a heart disease, I have outlived doctors’ expectations and continue to year after year,” I said. “I want to write about it in hopes to inspire other heart disease survivors or I hope I can provide some hope to mothers and fathers who have children living with little prognosis.”
“Oh, wow, that’s awesome!” she said. “I couldn’t imagine living with a weight like that.”
Up until that point I never had the right words, but she had nailed it. That “weight” was a true weight. Survivors guilt is a real thing, and being constantly reminding (especially every six months at my cardiology checkups) that I’m doing so well, especially for only having half of a working heart, is a remarkable thing. So the weight I feel is the constant pressure I put on myself to do better, to be better,
and I am constantly trying to find my purpose. Sometimes people search
their whole lives to find their purpose, but the pressure I have to find mine before it’s “too late” is an anxious pressure.
“So what is your disease called?”
I gave her the quick non-sob story about my four open heart surgeries, my pacemaker and living with my heart disease, tricuspid atresia. What came next
was the first time in my life I had every reason to cry, but somehow, in some miraculous not-myself way, I kept my shit together. Me, someone who could cry at the site of a dead cat in the middle of the road, didn’t cry at this.
“So do you have any kids?” she asked.
“No,” I said.
“Well that’s good,” she responded.
Wait, wait… what did she just say to me? Well that’s good? Good that we don’t have any kids? What did she mean?
I wanted to scream, reach across the picnic table we had been sitting at and pull one of her perfectly curled hairs out.
What did she mean by “that’s good”? Like we shouldn’t have kids because I have a serious heart disease? Like I shouldn’t try to live my life as normally as possible, like I shouldn’t still do the things I want to do (like become a mother) because I was born with a disease that makes my life expectancy less than hers?
I shot back at her without hesitation: “No kids… well not yet anyways. We’re actually going to be going through surrogacy soon; I can’t safely carry my own child.” I stopped for a brief second and imagined her inserting her petite foot in her own mouth. She looked at me with surprise.
“Oh, really?” She continued to ask even more questions about this. I was actually happy to answer all of them.
“Because of my heart disease, my doctors don’t think it’s a safe idea to carry my own, so instead of putting myself and our baby in danger; we decided to go this route.”
Since this conversation happened a few months ago, I reflect on it almost daily. It bothers me more than it should, but I am also thankful for it in the most ironic way. I’ll never understand how people can assume such things, why someone might assume that just because of my heart disease I wouldn’t have my own children. I may never understand how people can have such judgment and opinions on a person’s situation, but I am grateful for that day and for that conversation. Yes, I have a
heart disease, and yes, choosing and deciding to have children living with a sooner-than-desired “expiration date” is hard, but what would be harder is not living out my dreams because of my heart disease.
My hope for anyone and everyone living with unthinkable, disheartening and life-shattering sadness like the sadness and the realization that your life is going to be coming to an end, or that your life might be shorter than you thought, shorter than you want, my hope is that those people keep living… and keep living like you don’t give a shit, like you don’t give a shit that people are surprised you’re doing the things you’re doing knowing you might be dead soon. Keep surprising all those people.
It’s important for everyone in this world to hold on to the hope in their hearts, but for the people living with shortened life expectancies, living with unbeatable odds, it’s important for us to keep going after what we want in life. After all, that is what keeps us alive.
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