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.