Some of my health care experiences in my life have helped me understand what it’s like to be a patient. To want answers right away. A name for a symptom to make it real to the people around me. To make it separate from my identity. To want someone near me who understands that people who are chronically ill don’t have to be inspiring, uplifting, or handling it well. I’ve learned that sometimes people just need to say “I feel bad and it’s hard”. Illness isn’t a Hollywood inspirational adventure. After years of practice and half my lifetime of studying the body, medically I can still find myself in helpless situations where no one hears me. It blows my mind that I’m speaking the language, I understand the system, and yet I hit roadblocks that crush me emotionally. When that happens I’m reminded of how hard it is for all of the people I see as patients who have an even harder time navigating the system. On days when I’m tired or don’t feel well, I remember that I chose my job to be there for those people. I learned a few years ago that I had a genetic heart condition that could cause me to die suddenly at anytime. I had a very rare circumstance—I inherited 2 separate genes that could cause my heart to develop differently. The problems associated this have caused other problems along the way that make everything I love harder. I do everything I can to stay physically strong, but it has been an uphill battle. Recently I hit a point that I couldn’t fight uphill anymore and it was time for intervention. It was time for open heart surgery followed by another surgery for an implantable device that can rescue me when my heart stops.
I’ve mostly kept this process to myself because I know these things make others uncomfortable. The signs of this challenge are visible on my chest now, and it seems like a good time to share my experience and thank you for your patience.
At the beginning, I laid awake every night thinking. Thinking about how I didn’t need more out of my life. I didn’t want more or better, I just wanted to keep what I had. Children who I feel proud of every day because they are funny, patient, and kind. Walking them to school in the morning. People in my life who make me laugh and lift me up. Work that gives me purpose. Opportunities to study and travel and teach the things that inspire me. Time to dance and practice yoga. Chickens living in patches of wildflowers in my back yard. The best dog ever. A husband who looks out for my family. I have wanted to be a grandmother since the day my first son was born. I’ve always wanted to know what weird quirks my kids will make fun of when I’m old. I just wanted to be here. Most days I don’t project my experience on to others. Every now and then I did. Some moments it was so hard to hear people say they hated exercise when I was desperate to keep moving. Sometimes it was impossible for me to listen to people get focused on what they didn’t have when every day I just wanted to keep what I had. Every now and then it was hard to listen to people talk about not wanting to get the kids ready for school when all I wanted was to keep waking up to do it every day. I wanted to walk them up the street to school without struggling.
One of the first things I started to do was make my world smaller. I had sensations all day that served as reminders that none of us will be here forever. Small things mattered less. My energy became limited, and I saw that I had to be conscious of who and what I gave it to. The biggest thing I noticed was that the people who patiently waited for me to have time and energy were the ones who I wanted to give it to the most. But I didn’t. They were waiting while I gave my energy to the loudest problem. I also felt torn. I wanted to give my kids every moment, but I wanted them to see that dreams and passions are part of your life and you can’t give them up. You don’t quit. Ultimately, though, my life didn’t change that much from knowing that my time could be limited. I didn’t quit my job because I love it. I didn’t go spend money because I have enough things. The small things that made my life meaningful didn’t change. There was no bucket list. Actually, more than ever it was clear that external experiences wouldn’t be on that list. My list was just to experience the small things. Connecting with strangers, listening to music I love, petting my dog, doing yoga, dancing, trying to help people, and sitting with my closest people talking about nothing. That’s all I wanted. The toughest thing but the most valuable was to try to be ok with where I was every day, good or bad, and knowing that I have more control over my reactions my circumstances. Sometimes my reactions were terrible, but life constantly gives you new chances to react differently. Fortunately, most people that love you do, too.
Of course, I’m by no means perfect. But I found myself being aware every day. If I sent my kids off to school or bed and it was the last time, what would they remember? Would their memory of me reflect that I think they’re the most incredible little humans in the world? I stopped reacting to spills and lost gloves. I wondered, would they remember strain and exhaustion or would they see what was deeper in my heart? I had to accept that I don’t get to dictate that, but I could try to show the love and patience I felt. I started to trust them to be strong. I trusted that they’re able to see that they’re deeply loved, and believe in them to be capable fighting their own challenges with or without me. I started to try to replace my fears for them with trust in them. I know they’ve seen my light fade a bit over the last few years, but I’ve learned to trust that they still see the love.
These last few weeks have been a whirlwind in some ways. I’ve listened to so many people tell me that I have a very high risk of sudden death. I’ve felt it for years and the words are just words now. I don’t feel anything anymore but gratitude that I’m not suddenly trying to process what that means to me. I have had time to process it. It means remembering to love the people near me every day. It means knowing what I love and fighting for it. And now, finally, it means that someone will fix it. A second chance.
The surgeon thinks that with a more normal heart, I can do more of the things I love again. A second chance to be grateful for the one body that carries us through this short life. A chance to feel the joy of moving it. I want that so badly I can hardly stand it. My specialist said that my implantable rescue device will almost certainly save me at least once. But then I’ll get up. Statistically a lot of people get anxious about being shocked. I was surprised by how different I feel about it. It’s an amazing thing to see that my lens has just changed. It’s no longer a lens that reminds me that every day is uncertain. Now it’s a lens that reminds me that I’ll get something weird and amazing that most people don’t get. At least once, I’ll get a second chance at life. Instead of wondering what will happen to my family and my work if I disappear suddenly, I wonder what it will be like to open my eyes and see what a second chance feels like. In some ways, I already do. I’m healing and waiting to see what lies ahead with a stronger body. I won’t say that this process hasn’t been painful. The pain has been brutal at times. But the pain of the fear leaving my boys without a mother has been replaced with the physical pain of being born into a new beginning. One thing I know is that I wouldn’t trade the hard parts for anything. It’s hard to imagine myself without that challenge reshaping me. No book or movie or lesson could teach me to experience the moment like recognizing that life is fragile.
I’ve struggled a little bit with hiding it all, being vague and overly positive because that’s what people want. Putting energy into hiding things isn’t high on my personal list of priorities. I just know it’s easier for people to just see me as a healthy person and not a person overcoming challenges like everyone else. I’ve struggled a little bit with knowing that the rest of my life I’ll have to decide if I want to try to hide the little box on my chest and my scars. I’m grateful for this gift, but it feels like I’m supposed to hide it. My gift of remembering what matters to me, my gift of a new chance to use the body I have again, and a pending gift of a second chance. Maybe I don’t need to hide that. I know it’s ugly for my eyes. I won’t lie and say that it doesn’t hurt to wear that vulnerability on the outside now. But maybe I can get to where can look in the mirror and see it all showing and be ok with it. Maybe I’ll see what it represents. A fresh start. The opportunity to have access to the best intervention in the world. A normal lifespan. A chance to look deeply into what matters and come out ok. A chance to get excited about getting old. A chance to know what if feels like to open my eyes to a second chance. I’m so grateful for everything I have, and it’s amazing to give myself permission to feel hope again.