Tag: POTS Syndrome

Caravan

Greg is singing the praises of a beach-side campsite in northern California.

“Ooh, I have to add that to my bucket list,” says Mary Rose, getting out her phone.

(Mary Rose’s bucket list includes the whole world, as far as I can tell. She is spiritedly racing the clock of debility, before spinal stenosis limits her further. She loves every campsite our caravan chooses. All she asks is that we park close enough that she can socialize without having to walk long distances. Even we introverts willingly scoot together.)

When I don’t reach for my phone to make note of this Edenic campsite, Greg cocks a quizzical brow. I explain that I don’t even have a bucket list; I assumed I’d never be able to do anything on it. A realization is slowly dawning.

“I wonder if I’m limiting myself unnecessarily.”

Greg and Mary Rose both smile.

“I’m glad to hear you say that,” Mary Rose says. “I don’t think you’ve fully absorbed the freedom your van can give you.”

Image shows a wintery desert scene in evening light. Tufts of brown growth soften an expanse of gravel. In the background rise two low mountain ranges, the nearer one coppery brown, the farther one more grayish. Near Earp, CA. (The sky is 100% blue in all photos unless otherwise noted.)

“We’re having a campfire tonight. Gwen’s bringing her guitar, and I’ll have mine. Bring your ukulele and play a song for us,” Zeke suggests—again.

“I’m not very good yet.”

Zeke isn’t impressed.

Eventually I gather my courage to play and sing “When You’re Smiling.” Cheers follow.

“Charlie Chaplin wrote that,” says Zeke.

Gwen smiles warmly and talks about how playing in supportive groups encouraged her when she started, too. She launches into a Mazzy Star tune, and the songs keep flowing.

Image shows an ocotillo stem from below, the tiny leaves and not-so-tiny thorns on its twisting branches shining against extraordinarily deep, dark blue sky. At American Girl Mine Road in southern CA.

Evan glances away, his voice gentle. “I know you’re not able to hike, but you miss exploring. Is there a reason you don’t break camp to explore by van?”

Oh. There isn’t. I realize that I’ve been conditioned by camping alone in Colorado over the summer not to leave a campsite lest I lose it. Now I have fellow campers who are glad to save my place.

Image shows a dust storm beginning at American Girl Mine. In the background, layers of charcoal and gray mountains shimmer through a fine layer of blowing sand. In the foreground, creosote bush shows bright green against a ground of gray gravel.

“I’m stuck in deep sand. Can you pull me out?”

“On my way,” Zeke texts back. While I wait, I make a cup of tea and relax in desert sunshine with my ukulele. Soon Zeke shows up and unearths a snatch strap from his arsenal of recovery gear. He’s perfectly cheerful about having to break camp and wallow in sand under my van to attach the strap to the front axle. In moments I’m mobile again.

Image shows evening sun bringing warmth to a giant mountain shaped like an iceberg. At Kofa National Wildlife Refuge, AZ.

“I may have to leave,” I tell Tess. I’m not used to socializing. I haven’t conversed with five people at once in years. I struggle to process all the information in a conversation. And people keep dropping by my van to chat, as if they want my company. My brain is fried, and I’m exhausted, unable to recover after a flare-up without full rest.

“No, don’t leave!” she replies in dismay. “We’ll find a way to make it work. You can put up a flag or something when you’re up for company. Just please stay.”

Image shows fog, of all things, on a dramatic, cloudy morning amid the mountains and spires of Oatman, AZ. The foreground is dotted with white “jumping” cholla—extra-spiny cacti that pounce on the wary and unwary alike.

Just please stay.

Except among my inner circle of family and friends I have never encountered people who accepted my disability so readily, with so little judgment; who encouraged me to stretch my limits without denying them; who accommodated them with so little resentment. Not once in the 4 1/2 months I camped with this shifting constellation of people did I feel pressured to “pass” for able-bodied.

My experience in 26 years of illness, including six of disability, is that most people are willing to accommodate limits—right up until the moment those limits affect them. That’s when you become a whiner, an oddball, a wuss; someone without the gumption or will or character to keep up. The disabled, neuro-atypical, ill, or elderly who want full access to a world built for others are not always considered fully fellow humans, but rather an irritating, “less-than” minority making inconvenient demands of the “real” people. We may be accommodated out of pity or under duress, but seldom because we’re desired. Because people want our company.

I have often found it easier to harm myself by trying to “pass” in public for abled or to withdraw from the world of the (temporarily) able-bodied than to be thus diminished. The fight for self-hood can feel like the ultimate exercise in futility, because people who don’t see you as “real”…don’t see you.

Image shows the sunset over Lake Mead. A lenticular (“spaceship”) cloud dominates the upper right sky; to the left are streaks of more ordinary, sorbet-colored clouds. In the foreground, the mountains are layered in midnight and paler blue, with the lake lapping at their feet.

“Just please stay.”

One member of our caravan has hiked the Appalachian Trail; one was a wildland firefighter. One ran ultra-marathons, another served in the Navy for twenty years. One walked across America and rode the rails as a hobo for fun. One raised a child at 16. These are not people who twiddle their thumbs.

What grace made them open to limitations, taught them to understand human value as separate from ability? To care more about the “content of someone’s character” than their capacity to perform up to standard?

Why did they value me enough to accommodate my disability when others have not, even though I have been the same person to them all? Are nomads—people for whom “So, do you have a sink?” is a genuine, curious question—just predisposed to see a broader range of normal?

I don’t know. We certainly had our share of -isms, judgments, and divisions. I just know that in this caravan, ableism wasn’t one of them.

It matters, more than I can tell you, to belong.

Image shows a dramatic sunset at American Girl Mine. A single cloud, shaded from neon orange below to almost black at the top, angles upward across the whole photo. The sky at the flat, black horizon glows hot.

*****************

I encountered my caravan through the Homes on Wheels Alliance. HOWA is a not-for-profit that prevents unsheltered homelessness and supports nomadic communities. Every winter they organize caravans in the desert southwest. I joined one simply hoping for a sense of safety. I certainly found a great deal more than that.

Posted on by Stacy 7

A Rolling Stone

The last thing I have is roots.

The last thing I want is to be earthed in one place. I have burned to fly for years.

So why—why, why?—am I reviving this long-dormant blog that honors trees, whose roots fix them in one place for life? Who cannot move, ever? Who are housebound from birth to death? And why now, when I have finally shed what tied me down and regained at least some of an animal’s birthright of movement?

Let me catch you up on some backstory. For the last five years, I have been almost entirely housebound with chronic illnesses. I could go grocery shopping every couple of weeks and seek medical care, but otherwise I looked at walls. I stared at the ceiling. I rested. I could seldom read, or watch movies, or listen to music.

I watched trees grow—slowly—in my small, much-loved, walled garden. Birds were my companions there, and lizards, and 6- and 8-legged beings whose paths crossed mine. I was a tree, though a poorly adjusted one, planted in the Adirondack chair, envious of the birds who could come and go as they pleased. The lockdown the healthy found so difficult during the pandemic had been my lot for years, with no walks outdoors, no excursions for take-out, no hope of an end.

Image shows the patio of a small garden, with potted plants, a wooden Adirondack chair, and a folded sun umbrella. In the foreground is a birdbath, greenery, a patch of yellow flowers, and a gravel path. The garden is lovely (if I may say so), but you cannot see over the walls.

Then I was fortunate enough to be accepted as a patient (and guinea pig) at one of the best research and treatment clinics in the country. With knowledgeable medical care, I have been slowly, partially freed, improving from 95% housebound to perhaps 80%. Instead of four hours a day of “feet on the floor” time, I often have six. Despite that huge, 15% gain, it was not enough to get me out to the wilderness I love, or to let me travel to visit family.

Then I realized that part of what kept me housebound was the actual house: the weight and heft of foundation, beams, and drywall, the burden of upkeep, the bulk of everything owned to fill it.

Image shows a row of Pueblo-style townhouses in southwestern colors of sandstone, maize, and turquoise in a narrow driveway, as seen through the windshield of a vehicle (with a radio antenna very much in the way). A street sign reads “No Outlet.” Symbolism? You decide.

What if I exchanged a fixed dwelling for a mobile one? After two years of thought, research, planning, work, and help, that became reality.

Image shows a white camper van heading up a dirt road on a glorious, blue-sky day through a landscape of juniper and piñon trees. A dramatic, rocky bluff beckons in the background.

Which leads us back to the present. For the last five months, I have been a nomad, doing things I could not when rooted in place: visiting family, exploring new places, listening to thunder rumbling over the mountains, wondering every day what I would see from my back doors. I mostly go to beautiful places so that I can lie down in them, but still. Movement has been glorious.

Image shows a white camper van from behind. It is in the distance, heading down a gravel road through cottonwoods in various shades of (let’s be realistic) uninspiring, autumnal brown. Puffy, white clouds dot the sky.

So why, now that I am a rolling stone, am I reviving a blog whose first premise is that trees have much to teach us?

Because I still think they have much to teach us—lessons I have not learned, let alone mastered. Trees are experts in long-term situations, at thriving when no change is possible, when ”fight, flight, or freeze” don’t apply. They endure and adapt rather than running, denying, or conquering, and to those with conditions that cannot be run from, denied, or conquered, they offer glorious examples of how to flourish. They remind us that we can deepen at the roots and broaden at the crown, prioritize what branches to keep or discard, offer shelter to others, and grow greenly despite incurable hardship.

Image shows a twisted piñon tree. It is growing almost horizontally, with its roots exposed and its trunk spiraling. Half its bark is missing, but the needles are still green and vibrant.

They also remind us of the value of being. Trees do good in the world simply because they are, and they are trees. They do not check things off their to-do lists, or exchange labor for money, or earn their right to live through their productivity. But because they breathe and grow and green, we have oxygen to breathe, shade to cool our planet, birds and earthworms and lizards and squirrels and bobcats and bees to keep this world in balance.

And they give us joy. That is no small thing.

Image shows the white trunks of a lovely little aspen grove growing with lush, green grass and a generous supply of dandelion seed heads.

If there is one message I want to underlie this blog, it is that you have value because you are, because you live and are human. Life is a gift, given and received, and you can give and receive life generously whether you accomplish a to-do list or not. You have value because you breathe and grow and green.

That is the story of trees.

____________________

Note: I don’t know what shape this blog will take. I am not good at niches. So we may cover #vanlife, recipes on the road, wonders and marvels, Trees I Have Seen, chronic illness, and the works. This blog, like me, will be nomadic, and you never know when I might show up on your doorstep.*

*But you are more likely to find out if you subscribe to receive email notifications of new posts.

Posted on by Stacy 15