It has been raining every day for two weeks. Last night our resident groundhog knocked down the flimsy fencing around our raised garden bed and helped himself to the kale and radicchio, despite all of the methods to deter him (rubber snake, iridescent pinwheels, liquid smoke, and, aforementioned useless fence). The gladioli, unfortunate in their choice of timing to burst into their tall frilly rows, are bent over and soggy. The hydrangea are bowing their waterlogged clumps toward the ground. The cherry tomatoes are bursting out of their skins and falling off the vines with little percussive thumps. The spring well is teeming and the river on the other side of the road is a constant backdrop of white noise. Bumblebees cling to summersweet flowers, their fuzzy bodies soaked and still. Underground, growth is exploding, pushing up blades of grass and huge mushrooms. Bittersweet and Virginia creeper are seizing the opportunity to reach out and climb the trees, wild grape vines are claiming the length of fence beside the barn. The hard, bitter apples are dappled with mildew.
On days like this my brain slows down, and even after morning coffee (and mid-morning, and mid-day, and afternoon coffee) my eyelids and limbs feel heavy. My mind feels as soft and muddy as the earth, ideas sliding off into the gutter of forgetfulness and draining away. Sentences are pecked out between long moments of staring at nothing, movements are sludgy and difficult.
As long as I can remember I have felt this way, experiencing stretches of time where I am nearly unable to form a coherent thought, the wheels turning in slow motion, the dense fog descending. If I manage to get a modicum of productivity out of the day, it is because I have learned to push myself harder on these days, chugging caffeine like a fish in a bowl. The effort feels herculean, and the things that I am otherwise relatively disciplined about (exercise, making healthy meals from whole ingredients, and paradoxically, sleep) seem out of reach. Shoving a handful of tortilla chips in my mouth at 4pm counts as making dinner, right?
Since COVID lockdown, the almighty algorithm has fed me infographics, memes, listicles, reels, content about allowing myself to rest. Katherine May, whom I enjoy immensely, wrote an entire book about it. The problem lies with inertia. Once I allow myself to stop doing, the resuming of the doing is twice as difficult. I think it is a relatively common experience for most Westerners to have a bit of fall off after beginning a new routine with gusto. Racketeers peddling discounted gym memberships know this well, and funnily enough, so do bakery owners. January 1st everyone swears off of sugar and hits the treadmill in pursuit of their New Years resolution body, but by the time the daffodils are popping up in the lawn, business starts to dribble in and croissant sales improve.
Similarly, when I encounter one of these grooves that I tend to get stuck in, if I lean into the exhaustion, there is nearly no way to ride it out. It will sink into my bones and I swear, my body turns into a sponge bloated with ennui. Projects sit unfinished in every corner of the house, my mind gravitating to social media posts and my feet carrying me unconsciously to the fridge where I can stare at the available options until I inevitably reach for the thing that will deliver dopamine fastest. I often wonder whether it is wrong to force myself to “get things done” when I am in this mode (social media seems to think so). I have not accepted the role of someone who, with an impressive resume of chronic illnesses, by all accounts should be OK with resting, relaxing, resetting. What is one supposed to do when resting doesn’t feel restful?
By any measure, I am not a naturally active person, even though to the outside observer it may seem that I am able to accomplish a lot in a short time. Each morning I wake up with a sense that I haven’t really slept, but just allowed my body to shut off for a while. I have always had a very vibrant dream life, one that in my early years would even cross over to my waking moments. I remember clearly an instance at about 5 years old opening my eyes to see my toys moving on their own, or a strange recurring dream about alien beings still lingering in my room. I now know that these may have been instances of sleep paralysis, something which, thankfully, hasn’t followed me into adulthood. I still dream in graphic detail, sometimes waking up short of breath and heart racing, with a tingling of adrenaline in every limb. Napping during the day often makes my body feel like I have a bowling ball in each hand, and after so many measures to keep myself awake and alert (stimulants, coffee, daylight, exercise) it’s often difficult to even keep my eyes closed long enough. Most of the day is spent in an amorphous fugue state, somewhere wandering between alertness and distraction, consciousness attempting to focus on tasks like a flashlight through smoke.
After many endeavors to seek the source of the fatigue, the tension, the aching joints and tingling fingers, double vision and perpetual daydream, I have been gifted an alphabet of diagnoses; ADHD, Myasthenia Gravis, Endometriosis, Hashimoto’s Thyroiditis, General Anxiety, Depressive Disorder, even the possibly invented “Silent Migraine”. Most often, testing has offered little insight into where the center of the storm is located. Scans have never shown a bright spot of concentration that can be pointed to, as much as I would be relieved to say “There! That’s where it is all coming from!” Sleep studies were inconclusive, repeated spine and brain imaging is always rudely “unremarkable”. It feels unkind and ableist to nearly wish for a tumor or lesion to show itself, so that its nefarious little plot could be thwarted. If there were some part of my inner construction that could be removed by laser or blade, I would gladly lay down on the operating table and be done with it. I would crank up the laughing gas myself, if it meant I could wake up in a short time refreshed, with the ability to be conscious for 12 hours at a stretch without feeling like my internal battery has drained. Sadly, wistfully, frustratingly, there is no simple solution. The water is in every cell, making up 60% of me, but impossible to locate. When the storm comes, the roof of this house leaks and the only advice that anyone seems able to offer is to just place more buckets on the floor to try and catch the flood. Minimize the damage. Slow the progression. Wait until the sun comes out again.
With each new diagnostic acquisition I have felt that the picture was still not complete, that these loosely defined disorders don’t fully encompass what the lived experience is, and I long for a radar forecast, a bodily weather channel I could tune into to try and predict when the clouds might lift. Instead, the frustrating terms systemic, chronic, autoimmune, and I suspect psychosomatic have followed me throughout my medical journey. I have been told to take supplements, go gluten free, try meditation, drink less coffee, drink less alcohol, change my work schedule, and bizarrely, “have a baby so you will feel happier”. Spoiler alert: none of these things cured me.
In writings from my younger days, I often privately described it as “the dark cloud”, which floated periodically through my consciousness since about the age of 8. A few misdirected attempts at medication led to even further symptoms, and as a person with a body assigned female at birth, once the dreaded term anxiety was added permanently to my record, there would be few experts who considered what I reported with any seriousness. I have heard other chronic illness sufferers use the term flare, though it seems a bit of a misnomer to me, what I experience is more of a power outage that periodically takes me off grid for a day or longer.
The Gen Z crowd seems to have accepted these new terms with aplomb, creating online communities of thousands listing comorbidities in their profiles like dating sites. While we once offered ‘A/S/L?’ as an opening for communication, today’s tech users might add ‘Dx/Rx?’ Coining acronyms like AuDHD, or identifying scientifically dubious sub-types seems empowering to some, and I can understand why. Giving the dark cloud a name in a way takes some of it’s power and makes it one’s own. If I am no longer someone who has a disease, but a person living with different needs, the framing feels gentler and less shameful. The lights flicker on for a moment and I feel that maybe there is a path of understanding out there. Along with the young people’s mindset of prioritizing rest (to the Boomer crowd this translates to “nobody wants to work anymore”) we are moving toward a time of great caring. We all should be aware by now that the wellness industry is one of the fastest growing economical categories, rolling out products, diets, and apps to solve all of humankind’s problems if you just subscribe, enroll, enlist, track, invest. This speaks to the idea that young people actually do want to feel good, the antithesis of what the previous generation has come to expect, either in the workplace or even in leisure. The mental and physical stress that our grandfathers quelled with alcohol is no longer tolerated, and options available for individuals who need workplace support include things like Life Sherpa. The American Disability Act guidelines are ever being expanded to accommodate diagnoses like ADHD and Post Traumatic Stress Disorder. What was once considered a shortcoming is now becoming commonplace, and while it may seem lazy to our parents, the landscape of work and health is evolving.
As an elder millennial, I am on the cusp of prime bootstrapping ideology and the deep dive into the pool of acronyms. Watching my parents age into their 70’s, I have been struck by the level of denial they operate under, often refusing the offer of medical devices or procedures until an ailment is unbearable (and even then, limping along without assistance). Just as I sympathize with the need for diagnosis, I also understand the resistance. I have always felt uneasy aligning with passionate advocates like Johanna Hedva, even as I diligently searched for meaning in my own personal weather patterns. It may have something to do with my experience consulting medical practitioners (largely negative) and associated costs which have often prevented or dissuaded me from seeking treatment. Aside from physical discomfort, there is the resilience needed to ask further questions, to push for more testing, to seek avenues not offered. Most recently, when I asked to be medicated for ADHD, the psychiatric nurse practitioner asked me “so what do you want to try?” without offering any suggestions. The process is time consuming, demoralizing, exhausting, and something only the privileged can afford to pursue.
I can’t describe a more personal disappointment with the American medical process than this anecdote: after the birth of my son, I showed up to the hospital to meet with my OBGYN to begin the procedure of permanent sterilization. When I arrived, she asked whether I would like her to also remove endometriosis, should she find any during laparoscopic surgery. Reader, this was the first time a doctor had ever mentioned the possibility to me. I was 39 years old and had suffered since age 9 (!) with painful menses, often bleeding through my clothes at school or work. I had had multiple ultrasounds to investigate months long bleeding while on hormonal birth control, all “normal”. I had labor pain that I could feel through an epidural, but all I had been told about the intensity of the pain I felt as a young woman was that “my hormones were strong, which will help when you have a baby later!” My surgeon was correct, it turns out, and as she told me upon waking from anesthesia, my bowel had been almost completely adhered to my abdominal wall. I still feel the effects of that surgery 3 years later.
This is not an uncommon story. I think of myself as someone who is able, with unlimited potential, but who may need to take a bit of a step back at times, often against my own will. During my childhood, my father often told my siblings and me never to say “I can’t”, pushing us to consider whether our limitations were real or imagined. I have rallied against being seen as weak or lazy, often working myself to exhaustion to try to excel in the hospitality industry, which demands long hours and physical strength. I have certainly benefitted from being White, English speaking, and middle class in situations where if I hadn’t been, the level of care I received would have been radically different. I am sad that this is as far as we have gotten in the world of health care, with critical health protections being threatened all the time. It is easy to feel helpless when the system in place doesn’t support seeking help. It is tragically misleading that the last location one might encounter hospitality is in a hospital.
My discomfort with the rain is not a fear of getting wet, but a petulant desire to play outside in a thunderstorm. I want to do it all, with the stamina of a Clydesdale plowing a field, but what I seem to be able to manage these days is uprooting the bishop’s weed from under the hollyhocks, and throwing medications at symptoms like a hail cannon. I am bitter that I have so few options for healing, but I am hopeful that the next generation will demand that we learn more, help more, care more. I want my child to have medical practitioners who listen, who have time, who believe him. I am learning to be gentler, and kinder to myself. Softness doesn’t mean that things aren’t growing. I know that as soon as the sun peeks out again, I will be bounding out to till the failing cantaloupe as if it had never rained at all.
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