Tuesday, April 28, 2020

When It’s Over, Will It Really Be Over?

I’ve had a lot of time over the past days and weeks to reflect on COVID-19 and my experiences as a chronically ill person. To say I’ve been scared is an understatement. At home, I feel safe. I’ve barely left my house in over six weeks, and don’t plan to unless I absolutely have to.

From a personal standpoint, what I’m struck by the most is that I’ve once again been forced to face my own mortality. This isn’t the first time, and I know it won’t be the last. And don’t get me wrong. The specter of this hangs over my head as a chronically ill person all the time, but there are some times when I feel it more than others, and now I’m not sure I’ll ever be able to not think about it.

When I was 7, my grandfather died. When he died, I think that was the first time that I really understood what death meant, and that eventually it comes for everyone.

When I was 22, I was diagnosed with lupus and rheumatoid arthritis. It felt like until that point, I had been plugged into a wall outlet and the plug had been pulled out. It felt like I was dragging an impossibly short cord.

Two years after my diagnosis, I got a pneumonia vaccine at the recommendation of my rheumatologist. To this day, no one is sure if the reaction I experienced was due to an allergy or because the vaccine had been administered incorrectly, or both. I spent three days in the hospital, almost lost my arm, and could have lost my life. It was the first time that I realized that these illnesses could kill me.

When I was 29, my dad died unexpectedly as a result of severe flooding in Michigan.  To that point, the worst thing that had ever happened to me was getting diagnosed with multiple chronic illnesses. When my dad died, the worst thing that ever happened to me happened to someone else, happened to someone that I love(d).

Many things happen in life that we will never understand. They happen indiscriminately. But what really gets me about COVID-19 is that there were warnings. There were signs. There were things that could have been done to prevent it or mitigate its effects. And now, daily, hourly, people in our country are suffering and dying. And for what?

And those of us with chronic illnesses/disabilities have targets on our backs now more than ever. I know that I fear getting sick and not being able to get care if it is rationed to the degree that people are talking about.

I’m also frustrated, because as things start to reopen, I know that my life will not reopen like it will for healthy people. I realize that my life won’t get back to “normal”. And that’s when I realize that I lost the luxury of “normal” 12 years ago, when I was diagnosed with multiple chronic illnesses. I lost the luxury to make certain decisions that I would have made indiscriminately before, and are now made at the behest of my chronic illnesses. So for all those who celebrate the “new normal” that will come, for me, there will be a “new new normal”. Another mind- and heart-shift amongst many as a chronically ill person.

Right now, I don’t know what that “new new normal” will look like and I don’t know when it will occur or it already has. All I know is that when I left work the second week in March, knowing that I would be working from home, I never imagined that there wouldn’t be an end date. I never imagined that going to the grocery store, something I clearly took for granted before, is totally off limits to me now. I never thought I’d have to think about every move I make or every place I go. And I never thought I would have to justify my very existence to people I thought were friends. But in the age of COVID, nothing, and everything, is off limits at the same time.

The only thing that makes me feel more “normal” these days is that because COVID has sidelined everything, I’m going to doctors on a more normal schedule. My gynecologist cancelled my six-month follow-up and my dentist cancelled my every-three-month cleaning. Makes me wonder how essential they were all along. But for now, with no problems to speak of in those areas (knock-on-wood), I’ll take the break. Because going to the doctor right now, if I don’t need to, feels like more of a risk than it’s worth.     

I am grateful for many things, and know that I am in a position that not everyone can be in right now. I have a job that is allowing me to work from home. I still get a paycheck. I am able to afford what I need. But I miss my family. I would like to be able to see them more than just through my side door. And that’s all I want. I don’t care about going to the mall or the movie theater. I just want to spend time with them, because as this pandemic has reinforced, life and time is something that we aren’t guaranteed.