“I wanna make stuff!” said Inner Child indignantly.
I got down to her level. “I mean…you can make stuff if you want. Not right now because we’re resting – but if that’s something you want to do, I will make sure you get a chance to make stuff.”
“But whe-e-en?” sobbed Inner Child, wiping her eyes with tiny fists.
“I know you don’t like to wait,” I said. I put a hand on her shoulder as she shook with sobs. Her nose was running. Tears stained her smock.
My posture softened and I invited her in for a bear hug, allowing the river of snot and tears to gush into my breast. She shook a few more times, shoulders quivering.
Sometimes I have trouble understanding that I am sick.
I suppose my articulateness doesn’t help, nor my writing ability, which is weirdly intact. Others are often incredulous about how disabled I actually am. But so am I.
What is even more unhelpful is a lack of documentation. Despite complaining of varying degrees of brain fog or inattention since maybe 2015, I’ve never had basic neuropsychological testing to confirm or classify this. I may pursue this soon.
It’s to the point that most of the time I lack the endurance to fill out a basic form, read a short article, watch a television show with full attention – and particularly, to do any of those things repetitively.
There’s also the thing I call inertia. That’s where the day just kind of…slips by me. I had days in college where I would wake up and spend hours on the couch scrolling through Facebook, playing freemium games, maybe having a snack – but not really quite remembering to do things like make breakfast, brush my teeth, take a shower.
I didn’t feel depressed. I felt pathologically content. I didn’t know why my brain had forgotten how to care. I was sated by mindless YouTube content and snacks, and would often be baffled when I failed all my college courses.
Perhaps there is a signal that our brain gives us – like hunger or thirst – to sense the effort it would take to complete something. If there is, at some point mine just…broke. It’s beyond ADHD, though there are similarities.
Even as my days slip away and my brain screams for oxygen, I will regularly try to initiate some project – maybe improving my website’s SEO, learning financial literacy, researching treatments for my condition – and then be somehow surprised when I can’t remember to follow even the basic initial steps for a day or two, let alone see a project through to completion.
Surprised despite that on many days I can’t even watch a silly Jubilee Media video with full attention. Surprised despite that in 2020 the approximate amount of “tasks” I could initiate in one day was three, where a “task” was defined as writing a single brief email or making a short phone call to schedule an appointment. Surprised despite that in order to watch a film I often have to break it into chunks – watch 12 minutes one day, 10 minutes the next, 15 minutes the next day…hey, wait, is there a film I was in the middle of? Look at that bird!
But I wonder what one is to do? How do you teach the brain that it is sick? How do you unteach desire?
I won’t soon stop longing, but I will find my way.
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.
Hey everyone. My name is Nora. I’m 27 years old. I overcame insurmountable odds to be here. I have come face to face with a deep, ineffable suffering that is the birthright of every human, as horrible as anything, as old as consciousness, as typical as the sky at night. But I don’t really want to talk about that. Please do not bring it up in front of me. Hey, what’s for dinner?
A number of us who live with complex, poorly understood chronic illness feel marked in some way by the experience. There’s a shared language among us; a common understanding that there are these people who get it and to whom it doesn’t have to be explained. But the chasm between us and the unmarked is so vast, sometimes it doesn’t feel it’s worth translating to non-natives anyway.
“It” came back in the past month. That cruelty that I had hoped was left far behind me in 2018, but I had hoped this with a thin wispy hope standing on a frayed feather. I’d no idea what had really caused the suffering that I shorten to “2018” or “it,” and simply could not devote very much of myself to wondering. If the answer wasn’t in my face, it likely would pull me from the joys I could experience in the present.
Humbled doesn’t start to cover this existence. I have been learning a bit about boundaries. I’ve wondered why I choose to remain in a life that frequently violates my boundaries.
I suppose for right now, the answer is “Just in case.”
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.”