Falling Apart in the Great Outdoors

Because even dust can eventually scratch glass, there is always the question of balancing rest and movement. Stay still too long, the body doesn’t work. Move around too much, the body falls apart. Making decisions on best practices for health and maintenance while disabled is a complex, frustrating, disheartening subject I still can’t sort out. I struggle with the unpredictable nature of Ehlers Danlos Syndrome even twelve years after confirmation from a genetic test. I have no set trajectory with no percentages to comfort or devastate me. It’s the not knowing that breaks me down.

I find quiet in my mind and brief peace outside; under the trees, on the sand, in water. I can’t decide how much I will sacrifice the physical for it. I don’t want to think on it. I don’t want to give up, and don’t know what that or how continuing looks. I spend my time over sand and in water. I walk up and down the littoral zone and surf, even when the water is still too cold in the northern summer. I trek dunes, surrounding myself in a surrealist landscape. It’s so much work trying to walk across soft land, barely constituting as land as we know it. That space between low tide and the wrackline spends half the day in water and still holds tide pools when the water goes out for the other half. The alien landscape, the liminal zone, the stark scape: this is home.

It’s hard to be outside and to plan trips when you don’t know if your joints will decide to play things loose and edge out of sockets inconsistent with actions - a toe, your jaw, patella. The wrong shoe a little too tight on the wrong day can lead to a week of lying down. Most days you swallow water just fine, but those others your trachea doesn’t know how or when to properly close off. Your hands could be undone by washing one too many cups; now too weak to grip a bowl and facing buying a too expensive titanium version because at least it’s light and you won’t have to worry about cracking it when your fingers can’t work right. You thought you could outrun the problems because you worked and worked yourself into some level of strength and endurance, only for the little things to start slipping and betraying you. There is no ignoring the problem anymore and you didn’t prepare yourself emotionally.

And I still work hard to remain on the sand. Each year is a new negotiation with my sinew, to try to get what I want out of it because the coast is harsh and yields to nothing but itself. It doesn’t like compromise and neither do I. I want things just so. I spent my adolescence barely strong enough to make it up a singular flight of stairs winded. I am desperately buying time to delay a seemingly distant yet near retirement from outdoor adventures. I don’t yet know if I am overpaying or when that deadline will come. Everything comes with an expiration date and no one has told me mine.

Laid out, it sounds foolish and impossible to go on a long walk let alone a hike or camping. I move stubbornly, not analyzing the why it’s possible only how I can make it so. The cruelty of it all is I become miserable the longer I go without a high amount of movement - even on those necessary recovery days. All of my efforts could be sending me to an early retirement. I keep going hoping it’s not true. I don’t dwell on being disabled while outdoors because everyone ends up a little winded or having to sit with the ache in their calves and some tightness in their shoulders - especially when you carry a baseline of seven pounds (often more) of art supplies and photo equipment on most outings. I don’t dwell because there is so much around, striking a balance between overwhelming and calming awe. I have too much to see and, for once, the intrusive thoughts are silenced.

My favorite thing is to sit in the sand and paint in monochrome the scapes around me, capturing in panorama the perspective points cameras struggle to work with and force you to struggle to capture. I sit with my ink and paint and graphite to show the space and shadows in my perception. In the greyscale there are few distractions - the focus on form, texture, and shades. Ultimately, it delights me to work in one color to find those basics. I can learn the environment as it was in the time I laid out the composition and important details. The dunes and tide lines change even day to day. No one will ever be able to commit the same formation twice.

I return again and again to the same sliver of beach. I am well acquainted with the baby dunes crowned with beach grass, adorned with beach pea and dusty miller. The tangle of roots on the broken windward sides break up streaks of dark sediment. The summer rustling turns to a soft rattle in winter. The large, gouged dunes only just protecting the too-close houses hold to them the salt spray rose, seaside goldenrod, and beach heather. All year you see and hear the gulls taunt, in winter the marine ducks bob on the water, and in the warm months the terns and plovers bicker and steal from another. In the waters, seals swim along when not sunning themselves on the spit of sand protecting the beach you can walk onto from the street. Their cacophony of disgruntled grunts is louder than ever it feels. Surprises appear, too. I’ve come across a whale’s skeleton — yellow, plastic rope, faded by salt and sun, looped around cervical vertebrate. The disappearance of several feet of beach slowly returns before being swept off again. A kettle pond grows from a tide pool and the sea slowly connects to it via the newly formed tidal flat. A long lost boardwalk reappears when a storm snaps off a dune’s side. With all these changes, it’s still the same place. I have seen it in rain, blistering sun, cold sun, fog, and snow; strangled with tourists and alone with only the disgruntled gulls and unfortunate floating seaweed.

These spaces are in constant flux - creation and destruction, resilient and fragile - while remaining the same. It’s still a beach, the dunes still stand, the waves never stop, and they support the same flora and fauna season to season. There is ongoing adaptations and adjustments in the face of violent storms, development, resource depletion, and disrespect. But it’s still the shore, still the coast, still the ocean.

Portioning out my energy and mandatory recovery time are part of the negotiation I make with my body in order to keep painting outside and to keep carrying around my cameras. I’m gentler with myself now, kinder. But I still push myself and remain frustrated with my own body. I worked hard to able to exercise and to hike as I do — yet it’s still never enough. This is where being able to slow down to inspect a plant, assess the sky, or spy on birds helps to keep my overzealous and self-destructive sides in check so I can keep going. It’s hard to focus on the personal and the negative when you see a bird of prey kite or witness terns squabble. The circles around beach grass caused by winds pushing the tips of blades to carve into the traveling sand is a marvel and strange beauty.

I still can’t tell if I am fast approaching the last of my days spent hiking or if I have a few decades left in me. My fingers and wrists keep getting weaker; the joints alternating between too loose and too tight. I already have a meniscus removed - a compound tear, shredded. I can’t bite into an apple without risking painful dislocation of my jaw. Yet there are days when none of these intrude on my life; hardly registered or allowed a day of rest. On those days I can hardly pace myself as I try to outrun tomorrow; to live the life I want for a short period. It’s this uncertainty which slowly kills my outlook and leaves me lost. You can’t plan for a future when you live in parallels. All I can hope is that I can adapt, morph, add and subtract — create a winning formula for the month or year before I have to create a new formula and solve it. Repeat as needed, annually and daily.

I put in much time and effort in finding ways to ease and lighten my load to keep going on these treks. In looking for coastal, especially sand, suited equipment I found similar advice for beach and snow. My uncle was an alpinist. It struck me that he and I are drawn to harsh, near-antagonistic environments. Biomes where only specific types can grow and thrive. He went to the mountains any chance he got. Every moment away revisiting and recalibrating gear — making so much by hand and with help because availability was poor and low quality. I am finding myself in the same position. I never denied that I am both going towards something and running away from another. In some sense, I wish to destroy myself. But I wish to create something beautiful in the process because while I don’t desire self-destruction I know all I can do is curb it. So I will create beauty in process, keeping tentative hope in my tightrope performance without net or mat.