The Loneliness of Being Responsible About My Health During the Pandemic

Ah, 2020, you’ve fooled us all. I had very high hopes for this year; everyone I know did as well. I finally moved into an apartment where I now live by myself, right downtown. I was ready to commit to searching for employment. After having a traumatic medical experience in 2018/2019, I was more than ready to begin my mindfulness journey, and I am grateful now that mindfulness does not require travel. I was ready to get back on track and to live again.

But 2020 derailed all of that. March hit and the pandemic has changed everything. I moved into my apartment on a Friday and by that Monday the world had essentially shut down. Here I am a woman of 32 years, finally living on her own for the first time, ready to take life by the horns and what happens? That’s right, 2020.

I was born with a heart condition and survived a stroke at the age of 6. My whole life has been filled with many challenges and a lot of the challenges included isolation, boredom and loneliness. In elementary school, I remember my parents and the teachers were so nervous for me that every day at recess, I had to sit in the nurse’s office alone because they didn’t want the other kids to play rough with me because of my heart. I don’t know if this triggered my need to be welcomed and part of a group, but that’s definitely stuck with me my whole life.

I have lost many friends due to recovering from an injury or illness that simply took too long for them to outlast. It was sad, but a good lesson to have learned that not all people are meant to be in your life for a long time. I do have a solid friend group now, but as it has become clear that this pandemic is serious and should not be taken lightly, I have noticed some clear differences in how my friends are acting vs. how I am acting.

For two months, the only other people I saw in person were my parents. They are in their 70s and are considered to be in the same “risk category” as me. I trust them with my life, so it was only natural when taking my daily walk that they would join as well. By April and May, it became clear that my friends wanted more than just our Zoom calls and constant texting, so I emailed my cardiologist and asked him what would be appropriate. He said as long as you are outdoors and all are wearing masks, it would be OK to sit (six feet apart) together. So I met my family and friends for walks and we sat in the park and caught up. When I finally couldn’t take the loneliness anymore, however, I caved and I slept overnight at two of my close friends’ houses, two separate times.

The amount of guilt and shame I felt afterward was substantial. How dare I have fun? After every moment I spent in the hospital, literally fighting to stay alive, this is how I repay my doctors and nurses and parents? With a sleepover during a pandemic? After having these anxious thoughts swirl in my mind, I burrowed and accepted my isolation. I haven’t seen my friends in person since. I have attended the occasional family barbecue, but cringe whenever anyone gets too close. It’s a gut reaction at this point and one I’m not sure will just go away.

I had my bi-annual cardiology appointment this past Monday, and yes, I had to go into the office. It took place at Boston Children’s Hospital where the adult clinic is located. The toy train from the middle of the waiting room was no longer there. Every family is separated by these large plastic barriers. It was just very quiet and odd for a children’s hospital, with a severe lack of joy. I saw my doctor and he told me: I can meet up with people but it’s going to have to be on my terms. I can only visit with people outdoors and stay six feet apart. I can even go to a restaurant and sit outside. He said that having a heart condition doesn’t make it any easier for me to get COVID, but if I do get it, my heart condition is very complex and it could be fatal. Sigh.

The loneliness of responsibility is just that. Lonely. My days consist of a significant amount of alone time — which in all honesty, I don’t mind. Heck, I asked and wanted to live alone. But the loneliness of being in isolation with no possible end in sight? It’s almost too much to bear. I see my friends, my perfectly healthy, never-spent-one-night-in-a-hospital friends, and there they are going on vacation, exploring new places, going hiking together, having fun together, all without a mask on but most of all without me.

I know if they had it their way, I wouldn’t be excluded, and that’s kind of what I get for setting these extreme boundaries. Being responsible for myself and my choices is quite awkward for me in a way, because some of my friends just don’t get it. They’ve never had to spend one night in the hospital, let alone a month or two months. They’ve never felt the absolute crushing disappointment when a doctor says they can’t fix your problem. Most of all, though, they’ve never had their bodies fail them time and time again.

So here I am left with the biggest responsibility of them all: keeping myself well. Keeping myself healthy so I can have a future. So I can someday have a career, adopt a dog or a cat, get married, learn how to embroider and sew, finally see the ending to my beloved show “Supernatural.” My responsibility is to be kind to myself and take the good and bad days for what they are and move forward. I want to stick around, if not just to see the other side of this, to see the kind of world we get to build once the pandemic is over. And if being responsible for myself is what it takes to get there, I’ll gladly do it.