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.”
It’s funny how people talk about “getting their shit together.” It’s like, does anyone reach that point of, “Hey guys, you know what? My shit is together. There is nothing more to be done here.” But after this year I feel like I’m pretty damn close. I may in fact have my shit together.
Pictured: a person who probably has her shit together. Photo by Tim Savage from Pexels.
I don’t know why this is coming up for me now. My emotions don’t alway process in sync with dates and anniversaries. But maybe it’s the approach of Rosh Hashanah. Maybe I’m hurtling toward a time when last year, I didn’t think I would make it to 2019, and wasn’t sure I wanted to. Maybe my body knows something I don’t.
A year ago I was terrified I would never feel happy or have any quality of life again. My brain was under constant assault. I described it to my dad as “traumatic stress disorder.” There was no “post-“. The worst fate I could imagine at that time was going through another day as bad as the one I’d just had.
In some of my absolute lowest moments, where I could not
function cognitively enough to read a book, listen to a song, or play a computer
game, I somehow managed to come up with the idea of hiring someone to
coordinate my health care. I was scared that answers to my predicament might be
locked inside me, and it would take some serious organization to pull them out.
My dad found someone fitting the specs and now I have a patient navigator working
for me.
Around the same time, a serendipitous discovery resolved my
most distressing symptoms – not enough to work or exercise, but enough to not
feel like I was being tossed in a washing machine at all hours of the day.
Armed now with a few usable hours, I used them carefully, setting about what my
friend Bethany calls “constructing a mental prosthesis.” I used the 7am-8am
window to plan the rest of my day, since my brain could not function enough to
make decisions the rest of the day. That very simple model grew on itself until
I was generating daily to-do lists of upwards of 30 or 40 tasks…and going to
bed with them all done. I started developing a detailed complex of protocols to
make decisions for me throughout the day, with regular engineering to minimize “crashes”
(which were just any time I had to make a decision on the spot, exhausting my reserves).
With a trashed working memory, I made it so the only things
I really needed to remember were: look at to-do list app for what to do. Look
at “Unscheduled Time” protocol if there’s nothing planned in the app. Write any
new ideas or desires in the Notes App – my to-do list app scheduled regular time
for me to look through these. For the first time in my life, I was following up
on every new idea I had, sorting them into lists that I actually utilized. I
was writing regularly. I was listening to new music every day. I was contacting
a different friend or family member every day. My calendar every day was full
of new adventures, albeit often very small ones that accounted for my frequent
inability to comprehend a five-minute video. I learned that doing a very small
thing is better than despairing that you can’t do a large thing.
And here you thought people won’t work unless they have to in order to eat.
I stopped getting trapped in wishing for what could be. I
stopped wishing I was someone else and focused on learning to draw out the
gifts I did have. I learned how to break the cycle of decision paralysis,
though I often forget. The point is at least knowing how. I’ve learned lessons
that I won’t soon forget.
I got in touch with all the people who I was scared my life
was too lame for, and made sure everyone knew they were important to me.
I learned to ask for help once I needed help, rather than
asking in a way that let on that I already knew the answer. Among other things,
this led to actually asking writers to look at my work and to co-writing a play
with my aunt.
I realized I could be as proud of the work I put into taking
care of me as I had been of my work as a research assistant in the past. I asked
my patient navigator to give me a co-author credit on the presentation he made
about me for a conference. He said yes. I had, after all, essentially taken my
own history for it, putting something like ten to fifteen hours into that part
alone. All of a sudden, when I was at social gatherings, instead of saying I
had been “working on my health” as usual, I could say I’d co-authored a
scientific presentation. About myself! How cool is that?
I quickly found like-minded and like-bodied patients online
and dove into that community, and was repeatedly overwhelmed by their kindness
and ingenuity. I was surprised and amused by the access I had to prominent
advocates I had admired from a distance. “Remember that filmmaker and that author
I like?” I tell friends. “I talk to them every day now.” In fear and wonder I
started properly nerding out about my medical condition instead of running from
it. I fought self-stigmatization telling me not to identify with a life of
illness, and wondered how people that brought me so much laughter and validation
could be considered a problem.
I set tough boundaries with people around me. I stopped
fearing being too much. I let myself be difficult and a handful sometimes. I
realized that I was still easier company than the people running my country who
made everyone in the world deal with their shortcomings. I stopped lying about
how well I was and letting those lies hurt me and confuse others.
I watched my country and planet start the descent into
fascist mayhem. I despaired over my government’s indifference to migrants and
needed to do something. But unlike in my college years, I didn’t put disproportionate
labor on myself in order to get activists to include me. I accepted that giving
money can be the most strategic and sensible thing, if not the most gratifying.
I got my family relationships in order and taught my immediate
family how to support me with my illness. We started replacing hurt feelings
and resentment with humor, organization, and acceptance of conflict. I
instituted weekly meetings for us to tackle the ins and outs of my medical
care, and it turned out that my care is so much work that this was really
warranted, probably from the beginning. I kept weekly assignment charts, and by
my count we’ve gotten *forty-five assignments* done since our first meeting on
June 14. The medical system is good at creating work for us! So is my body.
I learned that I am not synonymous with my feelings. I learned that objective observation can yield answers if you let go of the outcome you’re attached to. I stumbled upon mind-blowing insights by accident, in a spirit of science. I developed a “spidey sense” and sussed out problems in my medications and environment one by one. I gained my parents’ support as they saw that my suspicions were often correct. I let my body make the rules when medicine didn’t have a clear-cut answer. My body became the boss.
It’s just hitting me how proud I am. At my worst moments in
2018 I remember clinging desperately to a voice I thought I heard from the future
that said, I can’t believe how well it turned out. I’m brought to
my knees. I don’t know why I was spared. I know I can be a bit of a cheeseball
about these things. But I really do make an effort to not exaggerate what
happens to me medically. And I know in my bones that whatever I lived through
last year was unutterably, intolerably bad.
I feel blessed and pinch myself every day and want the world
to know. And yes, I am disabled and I need to bitch about it a lot. Both are
allowed to be true. In fact, I think the latter allows the former to happen.
I came away from hell with the intimate knowledge that the human spirit in me, what makes me me, cannot be destroyed. It is worth protecting and caring for. And it also has its shit together.
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.
On May 2, I was offered some rare hope that a pelvic pain
condition I had struggled with for many years could improve. My doctor put
forward a solid plan for what we would try, with the option of nerve block
injections if more conservative treatment didn’t work.
I felt tremendous relief when she told me this. She took the
condition seriously. She acknowledged that it was a major concern for me. She
knew I had had years of physical therapy with disappointing results. So of
course, I left with more pain than before I came in.
Wait, what? Yes, I believe that offering hope to a patient
in pain can amplify the pain temporarily. It’s pain that one has become
resigned to, and blind to. To exist in a body in pain can cause you to downplay
it after a long enough period of time. Action and struggle have failed to
liberate you, and they only serve to pain your pain, add alarm to alarm.
An unfortunately common camp of pain treatment attempts to pathologize
our very normal reaction to the onset of pain. We are listening to our somatic
alarm system and trying to convey its message, only to be accused by those
claiming to help us of over-focusing on pain and thus perpetuating it. The
accusations are rarely so agitational as I’ve laid out. They come with a
saccharine, compassionate face, making them all the more maddening. “Poor
thing, so stressed,” they muse, veiling the judgment that you’ve somehow
stressed yourself into a medical fiasco. “You’re so much better,” they cheer,
as your tissues move to their satisfaction and you grimace from the pain that
is blacking out your ability to respond.
It is very easy to convince someone that they are at fault
for their situation, even simply by omission. Our evidence-based treatments
have been applied, you’re still in pain; well, what’s wrong with you? Didn’t
you love all that science? Are you being anti-scientific? Get your mind off the
pain and get back to your life.
“But, Nora,” the pain whispers. “I’m still here. I matter.”
In 2013 I allowed myself to be subjected to exercise testing
at the OHSU Human Performance Lab. I had been experiencing widespread pain for
six months and fatigue for longer. I had to run on the treadmill until I
reached maximal effort – a VO2 max – and endorsed that I was too tired to
continue. The doctor and his assistant took a blood sample, hooked me up to
some electrodes and a blood pressure cuff, and stood me on the treadmill with a
spirometer in my mouth. The treadmill was started, and at regular intervals I
was asked to rate my perceived level of effort on a scale from 1 to 10.
I said 1 or 2 at the beginning. The speed and incline
increased, though I don’t think the pace was any more than twelve minutes per
mile. I started to feel uncomfortable. My chest tightened, my muscles burned
and yawned, my face flushed hot. I said a 5 or 6. I felt that I would run
myself into the ground. The doctor asked if I thought I could go long enough to
get just one more reading. I gasped a yes as the room spun. I heard a “Got it!”
and then the machine was stopped.
I felt the weight of the workout crash down on me, and the
stunned doctor’s eyes on me.
“You said a 5 or 6 when the machine was showing us that your
body could not continue any longer,” he said.
I didn’t say anything.
“You are drastically under-perceiving the stress on
your body,” he marveled.
Under-perceiving. I had thought for all this time that I was
over-perceiving. Others seemed able to accept pain and get on with their lives;
why wasn’t I doing that? I guess I was at a 10 and thought I was at a 6. Maybe I
also thought everyone else was at a 10.
Every year following that treadmill testing I would receive
a new diagnosis – postural orthostatic tachycardia syndrome, lichen sclerosus,
vaginismus, adrenal insufficiency, mast cell activation disorder. These were
the diagnoses that came up when I barely complained and hid many concerns from
the doctor, convinced they could not help. What would they have come up with if
I complained a lot? What if I complained in proportion to the problem? Well, I
suppose that would mean complaining all day.
I hope I can find the strength to pain my pain more. Let it
find its voice. This effin’ hurts and it’s okay.
Writing and editing this piece revealed to me some defensiveness. There is a strong impulse to tell – my body does this and this is why – and not show. I think I might know part of why. It’s what I felt I had to do, continually, when friends, medical staff, and authority figures repeatedly failed to mirror to me the experiences of my divergent body, to show me that they were real. Perhaps I appeal to an invisible authority in my writing to hand down some explanations, some realness that I was not afforded. The experience of worsening with exertion rather than improving was so primary to me that I assumed everyone knew what I was talking about. I question what is real even now.
One thing I wonder if healthy people experience is the sense
that activity is actively weakening you rather than strengthening. I have felt
before that exercise was eating my muscles or brain.
I started noticing this in maybe my sophomore year of high
school. I described it as the “gunk” I would get in my legs after
track practice that meant I wouldn’t recover properly from the workout. I knew
instinctively that if I rested and avoided running on hills, I would run better
than if I did the hard workouts. I remember the almost ill feeling that would
come over my legs as I slogged through an interval training session, and the
dismay when I would be slower and weaker the next time I ran. My freshest legs
and best race times always came at the beginning of the season. “She can run
one week, but can’t the next!” my coach once mused.
Why wasn’t I assigned an easier workout regimen? Looking
back, this idea seems reasonable. Yet I hazard that it would have run very
counter to the culture of competitive running. The standard mantra of athletics
(perhaps of society as well) seems to be “no pain no gain”; you push through
pain to ultimately achieve resiliency and benefit. You certainly don’t ask for
a special exception to be made when everyone else at your level is working so
hard. My struggles were easy to typecast as, at best, part and parcel of the
painful sport of running – or, at worst, a weakness of character.
When my coaches doubted the urgency of my body’s cries for
relief and kept pushing me to do more, I began to question it too. I remember that
during my more disastrous workouts, I would write parts of a poem in my head
called “The Cross Country Coach’s Lament,” from the perspective of an anguished
coach chiding an obstinate runner. “The time that on the clock does read / it
matters not to me” is the line I remember the best. “You’ve surest longing in
your eyes / yet run so _____ly.” (The adjective never got filled in to my
satisfaction.)
However, when the stakes became higher than running a good
race, I was forced to contend more seriously with this problem. At the onset of
my severe illness, I became so intolerant to exertion that the effort of
standing to watch part of my teammates’ race could mean I missed school for the
entire next day. I was sleeping up to fourteen hours a day and was scared to
shower, feeling that I would pass out. For someone who used to be able run a
mile in under six minutes, this was a big shock. I had been diagnosed with
celiac disease and inflammatory bowel disease (IBD), but the people I met in
online support groups with these conditions didn’t share my “exertion
intolerance” problem. Again I found myself the freak, but now I was even a
freak among freaks.
The fatigue improved dramatically with biologic treatment
for the IBD, but when I tried to gradually return to running the following
summer, something seemed off. A leisurely 2- or 3-mile jog at
12-minute-per-mile pace would spike my heart rate to 180. I would finish with a
lightheaded, beat-up feeling, and not experience my previous “runner’s high.” I
had built up to this level of activity at what was, to me – a former varsity
athlete – a painfully slow pace, having started with just walking one time around
the block per day and increasing to two blocks when that got too easy. Why
wasn’t I feeling stronger? Was this out of proportion to the deconditioning (medical-speak
for loss of fitness after long periods of bedrest) that I experienced when I
was very ill?
Life with chronic illness flies in the face of what we are
told about our own resiliency. I do believe it’s important to try new things
fearlessly as often as possible, but to also trust my body and know that it
often worries due to very real past upsets. The various ways I’ve learned to
protect my body – certain postures, avoidance of certain situations like
standing in line, minimal hair and makeup products, saving mental energy by
being a bit “rude” – are all very easily stereotyped negatively unless viewed
with an open mind.
One of the core cruelties of chronic illness is that the condition itself can muffle your ability to describe what is happening to your body and brain. In my worst moments over the past year, I have often spent weeks to months with my powers of expression muted, the words bobbing up transiently for air before disappearing back into a preverbal ether. I was “in there,” but there was no telling what would bring me out.
When significant improvements occur, I can suddenly speak, but by then the problems are often past tense anyway. From an email to my doctors after one such breakthrough: “I woke up feeling ten times better mentally than I ever do in mornings. There was less fog, less low motivation, less depression and anxiety, less weird dizzy or swimming feelings, less hypersensitive emotions.”
I had not been able to arrange those various symptoms into a coherent list for months, except for during small rare bursts of adrenaline. The symptoms would seal me in and prevent me from effectively seeking medical help, let alone support from friends, the actualization of writing down my experiences, the empowerment of learning about my conditions and meeting others who live with them, or really any kind of enjoyment or pleasure at all.
Alone with my infirmities and demons, I was backed into a corner to either succumb or recognize my worth and slowly dig myself out. It was adapt or die. When you spend any period of time so limited that the mental energy to watch a five-minute YouTube video often eludes you, you learn to cut the bullshit real quick. The little embarrassments I had over having such excessive needs just couldn’t be taking my energy anymore. Nor could anger at not having a different situation, someone else’s life. Conflict takes energy, including conflict with oneself. I am becoming better at sensing whether something is really worth my limited resources.
I don’t have a job. I am bored and at home a lot. I don’t do much. But I also do a lot. I work damn hard in ways others won’t see, and that sometimes I don’t see either. And yet, sometimes just existing and knowing your friends and family know you exist is enough.
I guess I want to tell you it’s getting better in some way. Maybe there are more superficial ways that will become more manifest in time. The physical therapist who had a plausible explanation for why I have failed over a year of pelvic floor physical therapy and thinks she can help. The fleeting, sputtering moment of clarity where I told my parents that I was relying on the executive functions of a mentally and physically ill 24-year-old with long-standing ADD tendencies to manage the care of a complex patient – the aforementioned 24-year-old – and we regrouped and got some help with care coordination. The unknowable time at which the anhedonia lessened and I could truly enjoy a few things again, for who knows how much more time. The support of parents who allow me to breathe a bit and stop being a full-time advocate who cannot advocate.
But I feel I do myself and others a disservice by romanticizing. For months I’ve been wandering a weird mix of trauma, hypersensitivity, depression, aggression, and brain fog, such that I often cannot even remember enough to describe how my day went but know in some vague sense that it was bad. I weather weird assumptions about my quality of life based on physical symptoms or labels, wanting to scream that I would cut off all my limbs if it meant I get my brain back. I have learned what it means to spend hours of a morning wracking ones brain for how to do a morning routine, then 10 minutes of that morning trying to attend to a 101-level lecture online, then the rest starting to go to the gym but being so agitated I have to get out. I have learned that maybe it’s ok that this is the first time I’ve felt able – as in, focus-wise, genuinely capable – to write a blog post since the last one. I have learned that even the fogginess isn’t so bad when your mind and body remember how to be calm. It seems not so long ago that mine truly did.
I have wielded diagnoses as a Something To Hold Onto, validation from a mystical board. Of course I don’t feel well, I inform you. I have celiac disease, Crohn’s disease, postural orthostatic tachycardia syndrome, lichen sclerosus, secondary adrenal insufficiency, and mast cell activation disorder. All of these are real; laboratory tested. Yet it’s an armor against how none of this explains what is going on; why I sometimes find even good and pleasurable thoughts torturous, like fingers raking into lava veins of nerves; why I feel worse and worse mentally despite no major demands on me, some improvements in physical conditions, and few other life stressors; why I scream threats at loved ones and then minutes later am relaxed and joking; why I haven’t truly slept through the night since December; why even gentle medications or supplements often lead to agitation and dysphoria. I haven’t had a single break from reality through all of this, always excruciating awareness that I sometimes wish I had some escape from. I don’t want to see myself behaving as I do. I don’t want to see others wanting to reach out and to not have the heart to tell them that lately, company often makes things substantially, critically worse. Harder. On. Me. Not. On. Your. Ego. Insistence on what I know I need, attunement to a soma trying perversely to protect me, becomes paramount.
I both hope I remember and forget this time at some point. At times I’ve looked back at my early days of illness through Facebook memories and feel generally what I should; compassion for the person involved but great relief and wonder that I am not her anymore. How odd that now I would gladly trade my current situation for hers.
I read some article a few months ago about scheduling your worrying. That is, if you’re a compulsive worrier, try this: schedule a time slot like 6-7pm that is allotted to worrying, and get it all done then. If you find yourself worrying outside of that time period in a way that does not need to be addressed now, you say, “Hey, it’s not time for that yet. I’ll do it later.” It’s like the worry equivalent of no snacking between meals.
I thought I might try this today, specifically with worrying about my health. Until my allotted hour this evening – with the exception of remembering necessary steps like calling the pharmacy or messaging a doctor – I will not research my health issues, I will not research treatments, I will not read online support groups or post in them, I will not express worries to my parents about my health, I will not plot my next medication or lifestyle changes.
My instinct is to say that writing blog posts outside of “worry time” is ok, since this is a positive connection to friends and the outside world, whereas worrying about health is typically isolating, obsessive, and rarely as fruitful as one likes. I also think that activism and reading about issuesfacingpatients and doctors more broadly is likely ok.
I’ve been doing this experiment for roughly an hour and I’m humbled by how difficult it is.
I realized there was a bit of a non sequitur in my last post. It may not have been immediately clear to the reader – or myself – if/why it was connected to the rest of the piece. I wrote:
“The superego harps on us to personally cultivate a calmness and adaptability that has already been stamped out of us by a polluted, sick society. Don’t take a medication, just take on a Sisyphean regime of meditation, gratitude, yoga, unlearning negative thoughts, elimination diets, essential oils, and all manner of things that counterbalance the level of neuroticism and self-curating bullshit you will need in order to actually survive. And that you probably need in order to feel better, as anyone who has tried to get anything done within the medical system can attest.”
I believe when I wrote this I was trying to yell back at the part of me that still (wrongly) blames myself or my attitude for my current situation. This is the part of me that turns to woo, magical thinking, and hopes of spontaneous remission when things are going very poorly, and then typically ignores those things once things are going well for reasons that usually don’t seem tied to any of the woo. Rather than approaching care for the holistic body-mind as a good in itself that can bring benefits for health, but not Solve Everything, I tend to get drawn in by marketing language that suggests cure or remission. It’s a little odd, because if a medication or procedure doesn’t work for me, I don’t blame myself for that. No drama there; it just wasn’t for me. Yet if a special diet or “brain-retrainingprogram” doesn’t work for me, I must not have been trying hard enough – at least, this is often the irrefutable rhetoric of their vendors. (Note that I haven’t actually splurged on one of the brain programs. The funny thing is, my guess based on reviews is that the most beneficial thing they’d do is help me to do is to calmly cope with limitation, not make limitation disappear as they claim.)
So I don’t wish to bash meditation or yoga or anything that keeps you calmly rooted in your body. I wish to bash any time I have told myself everything is in my head and under my conscious or unconscious control. I wish to bash the times I still tell myself, “That healer I saw would have helped me if I just stuck with it for longer.” I wish to bash the times I’ve told myself, “That therapist was the only person who could have helped me.”
That “blaming” or “fixating” part of me does another similar thing. It insists that any time not spent researching treatments or doctors is a wasted opportunity. It’s that constant nag that freelancers know, the “If I am not working on work, something is wrong.” The gaping reality here is that most of that researching happens when I am in too much of a fog or state of worry to garner real help from it. While I am glad to be empowering myself with knowledge, I might as well be doing 1 solid hour per day of this empowerment/worrying and it would probably have a similar positive impact to 6 hours – without the same damage to my personal relationships, sanity, and balance.
Right now, things feel so far out of my hands. I have had so much drama this week that one would think I would worry more. But I have caring and listening doctors, something that has made all the difference in the past years. I’m taking a step today to let them worry a bit. Not me. I’ll be over here with my heating pad.
