I rather think it’s predictable where we’ve ended up.
If we won’t listen to warnings –
no, that will warm the planet!
no, that will result in workplace accidents!
no, that will poison a community with biotoxins!
no, you have to put up a sign so people don’t swim with piranhas!
no, brominated vegetable oil is not fit for human consumption!
no, you can’t detain people indefinitely on pretrial charges; then you’ll have a debtor’s prison!
no, we cannot rip kids from their families and keep them in a shithole at the border!
no, you can’t just drain the state and municipal coffers when we have ghettos with no plan for revitalization!
no, you can’t just throw plastic into the oceans ad infinitum!
no, you do have to warn the public of a deadly pandemic on the horizon and protect people and their welfare, rather than doing insider trading to profit from their suffering!
no, you can’t allow price gouging of a fucking Epi pen!
Where exactly the living fuck do we expect to be right now, then, America?
I feel we’ve sorely lost our way. But I also feel out of the loop, as my chronic illness has kept me in a state akin to semi-consciousness. Maybe when I fully wake up, I’ll find some sense has been knocked into some folks. Or even – shudder – some empathy.
I
have been chronically ill, with varying levels of severity, since 2011. For two
years I have been too ill to work even part time, and I must spend a great
amount of my time at home. Now, due to a deadly pandemic, many of my
able-bodied friends find themselves in a similar yet different position. Grief
and “FOMO” pour over me in torrents as I am reminded of the vast chasm between
my life and what my peers recognize as a life, and I wonder how I could
possibly communicate it all.
But why is my sorrow surfacing so painfully now, at a time when I arguably find myself in good company? Now all the world is limited like me. Now they grapple with similar questions to me – how to define their worth outside of their productivity, how to spend days where they can’t just leave home for fun, and whether the health care system will be there for them if they get sick. Now they have a taste of what it might be like. Isn’t the chasm closing a little?
I’m
finding it’s more complicated than I could have imagined. But the easiest
answer I can give right now is that I am watching people simultaneously mourn
the loss of a lifestyle I lost access to long ago, whilst also indulging in
at-home activities I have lost the ability to do.
The
mass mourning I hear my able-bodied counterparts partake in – over their loss
of in-person social contact, of concerts and comedy shows and nights at the
movie theatre and pub crawls, of hugs and tickles, of a big vacation they had
planned – hits a numb wall of protective indifference in my brain. Some of
these are things I barely ever got to experience as an adult, and certainly
rarely without physical consequences. Others I lost the ability to do more
recently and am still grieving for afresh.
And
then there’s the at-home activities they are doing and posting on social media.
Things I pine for. The jigsaw puzzles that hurt my neck too much. The DIY
projects that I lack the dexterity for. The rekindling of a passion for playing
a musical instrument, something that I can technically still do but usually
only up to five minutes daily. The snuggling with pets that I am now too
allergic to own. The cozying up to significant others and children that I lack.
The gluten-filled comfort snacks and alcoholic drinks that my body rejects.
Even
the housecleaning and organizing projects that I simply lack the strength for.
The cooking that I can’t do. The Netflix binges and movie marathons that I
cannot do (on a very good day, I can get through a single movie, but usually
not uninterrupted). The reading that I cannot do. The video games that I cannot
play. It’s not just one thing. It’s all the things.
And I am finding that even among disabled friends who are benefitting from the migration of education and live entertainment to the Internet, I sometimes feel left out. Due to cognitive and sensory dysfunction, the etiology of which is not totally clear, I am often unable to pay attention to a movie, lecture, or concert for longer than five minutes.
It
is impossible to hold any kind of discussion with a healthy, abled person that
won’t touch on at least one thing that I invisibly am unable to do. It’s like I’m
missing an entire life.
But
normally, I am very happy to hear from my abled friends all the same. I love
hearing updates. I love calling them. For some reason, my brain has an easier
time accessing interactive conversation than static entertainment and I welcome
this.
But
boy was I unprepared for how rudely my grief would be forced out when all those
friends finally found themselves digging into the at-home activities I have
been sitting at home longing to be able to do for months. Like I’ve been
watching the most delicious cake through a glass display for months, always out
of reach, and now my friends are all chowing down on that cake without me.
I’m
not new to chronic illness, but I am new to the level of disablement I have
experienced for the past couple years. It is an unimaginable grief.
And
most of the time, I don’t have to work on imagining it. I just live the life I
have available to me – tending to my medical needs, staying in touch with
friends and offering counsel, savoring the odd thing I haven’t lost like food
or music or baths or dancing a little in evenings or chocolate or walking a few
blocks outside.
Or
I can try reading audiobooks at my impossibly slow pace just to get the feeling
back of being in a kind of flow. It doesn’t matter if I would sometimes flunk a
basic comprehension test of something I read minutes earlier. Does it?
Oh,
and I can write, albeit not consistently. Somehow that’s been spared too.
And
my friends and family didn’t abandon me when I became ill, which unfortunately
happens to many people in my situation. My support network is the absolute
best.
These
things aren’t trivial at all. They’d make me the envy of some of my closest
chronically ill friends.
I
feel tremendous sympathy for my able-bodied friends who have lost jobs from
this crisis, as well as those who can’t find needed food and toiletries in
grocery stores, and those who will lose friends, loved ones, or – god forbid –
their own lives to either coronavirus, or to other health conditions that the
medical system becomes too overwhelmed to treat. I feel rage toward my
country’s government for its callousness to the mass death and suffering coming
our way.
And
as much as I am hurting, I know this – if you’re able-bodied, the grief you are
feeling now is a normal and natural response to change.
But
when quarantine inevitably lifts, and you throw the first parties celebrating
your newfound freedom – consider which people are unable to join you.
They
are people like me.
Fight so more of us can.
Nora Helfand is a writer and former research assistant. If you like this blog, support her on Patreon here and follow her on Twitter at @nhelfand.
For more reading on the grief associated with chronic illness, I highly recommend the essay, “The Grief Keeps Coming” by Brianne Benness (who helped me edit this piece). I also recommend psychotherapist Kaethe Weingarten’s piece, “Sorrow: A Therapist’s Reflection on the Inevitable and the Unknowable,” in which Weingarten describes the chronic sorrow of four of her clients with chronic illness and disability. Weingarten defines “chronic sorrow” as “a normal, nonpathological state of pervasive, continuing, periodic, and resurgent sadness related to the ongoing losses associated with illness and disability, in this case not loss of an other but loss of self.”
