Long-COVID… and Something Else

I need to share something that won't seem like it has anything to do with Micro-farming, but it actually affects every aspect of our farm. I'm finally comfortable sharing about this publicly. It's taken me some time because things haven’t always gone well when I've been honest about my medical challenges. Over two years ago, in January 2022, I caught a post-vaccination case of COVID-19 and never quite got better.

This Seems to be More than Long-COVID

I started to have symptoms that were pretty off the wall, even by “Long-COVID” standards. I began struggling with balance problems, occasional vertigo, poor motor control of my legs, poor coordination in my hands, sudden random nausea, joint and muscle pain, severe sudden fatigue, and any time I flexed or extended my neck (looked up or down) for more than a few seconds, fiery electrical sensations shot down my arms and also from my neck up into my face.

Courtesy all those strange neurological symptoms. I spent almost two years being poked and prodded, tested for everything from ALS to rare, untreatable forms of Multiple Sclerosis. The only thing worse than confirming a death sentence diagnosis like that is finding out you don’t have any of those rare disorders, but no one can figure out what actually is wrong.

In the end, conventional doctors and specialists wrote me off as psychosomatic and told me to take antidepressants. Funny. I didn't feel depressed till doctors started totally dismissing me and my vividly structural symptoms.

Diagnosed, at Last

Finally, in late 2023, a fellow patient in a chronic pain support group gently recommended that I contact one more specialist, someone focused on rare “connective tissue disorders”. This new friend gently insisted, “Your symptoms remind me of my condition.”

I rallied enough to fill out half an inch of paperwork and submit my case notes for a 12th opinion. Three months and several blood tests later, the new diagnosis materialized. Yes, I had Long-COVID, but the systemic inflammation from COVID-19 had aggravated an underlying genetic disorder: Ehlers-Danlos Syndrome, specifically the hypermobile form or hEDS for short.

It took me two years of wrong diagnoses and medical dismissals (“You seem anxious… maybe you should try this anti-anxiety medication…), before I finally got this diagnostic clarity—courtesy the dumb-luck of knowing someone else with this rare disorder. As shocking as that seems, I recently learned that most EDS patients go an average of FOURTEEN YEARS with no diagnosis or overt misdiagnosis, before they’re appropriately referred. Wow.

hEDS compromises all my ligaments and, in my case, especially the connective tissues that hold my spinal vertebrae in place. Several regions along my spine and in my neck are now especially lax or “hypermobile”. The vertebrae shift around, sometimes directly pinching on my spinal cord, and branching nerves, and possibly impeding flow of my cerebrospinal fluid. Not great.

That can be profoundly painful, or it can just make me suddenly clumsy—depending on what type of nerve is being impinged at any given moment. It might pinch on a nerve that's a sensory nerve, which causes pain. Or a motor nerve might be impinged, which causes sudden problems with motor control, balance, or coordination.

Back in 2022, in the course of six months, I went from being a strong and fit forty-something who loves to hike in the mountains and do hours of hard physical work on our micro-farm to a woman who walks with a cane and has to limit physical work to no more than two hours per day. And no lifting anything over ten pounds unless I want to cause my neck vertebrae to shift—and all the resulting pain and coordination problems! I feel like I'm 80 years old.

It’s probably clear now how this condition and its symptoms affect my work at Stone’s Throw Microfarm.

A Bittersweet Season

We moved here almost ten years ago, and it was my passion project to transform this scrappy, rocky, one-third acre lot. About one-tenth of an acre is now converted into “yard farm”—between the raised beds in the conventional kitchen garden, a “tiny food forest” and two other tree guilds. That tenth-acre yields 300 to 400 pounds of perennial fruits and herbs and annual veggies each year.

I'm so proud of this transformation, which happened in such a short time. I'm also unable to continue the work required to adequately care for the gardens. The past two years, as I lost more and more physical capability, have been brutal.

I love this little patch of earth. I love that I've learned its rhythms and the robust microclimates that exist even in such a small space. I know which areas wake up first in spring, which areas dry out soonest in July, which beds grow carrots well, and which ones are better for culinary herbs. I know this little patch of land, like I know a loved one’s face and hands.

I love thinking not of four seasons, but of dozens of harvest seasons: Rhubarb. Orach. Lovage. Green onions. Salad greens. Spinach. Kale. Peas. Honey. Berries. Strawberries. Garlic. Raspberries. Black currants. Lemon balm. Mint. Saint John's wort. Tomatoes. Cucumbers. Grapes. Sage. Thyme. Squash. And then there are the bigger yearly rhythms of planting and harvest, preservation and planning: Starting seedlings and potting up. Transplanting and tending. Drying herbs. Freezing berries and veggies. Canning jams and applesauce. Making hand salves. Planning next year's garden.

Adapting Tasks, Exploring Experimental Treatments

I have loved my life here, and now I can no longer do most of it. Well, I try to weed and harvest while on all fours, and by lying flat on my stomach. To minimize movement of my spine, I try to process and preserve foods by sitting on a low stool with my task at eye level, so I don't have to look down.

None of this works well. Any time I bend my neck to look more closely at a task, and any time I overwork my shoulders and neck muscles, my vertebrae begin to shift and put “shearing pressure” on my spinal cord. It feels like incurring a significant new spinal cord injury or head injury a few times a day. It feels like that, because that is pretty much what's happening.

There are no insurance-covered, direct-treatments for Hypermobile Ehlers-Danlos Syndrome. Though insurance will gladly cover pharmaceutical drugs that numb the pain and turn me into a zombie incapable of work. Sorry; I’ll cope with the pain instead.

There’s something called “prolotherapy injections”, which can help tighten the unstable ligaments for some people. This is the only method of direct-treatment. Of course, it’s not covered by insurance. I’m trying it anyway. It may be another year before I really experience results. Even so, the results will be temporary. Prolotherapy is not a cure, but it might stabilize things for a few years and buy me some time while I plan a strategic path into a challenging future.

 How will I care for the micro-farm this year?

I am seriously scaling back on farm tasks. I plan to plant about one-third of what we’ve usually planted in the past. I used to start over 200 seedlings indoors each year. I’m reducing that to about four trays.

It will be a year of discovering how much the established perennial foods provide for us. Honestly? This will be a real test of core permaculture principles. Take care of the land… so it can take care of you. We’ve certainly transformed this plot over the past decade. This year, we’ll find out how much the established ecosystem can take care of itself—and how much abundance it might share with us, even when we’re not able to put a whole lot of effort into it ourselves.

If I put a third of the usual effort into the land, will it “give back” only a third of our usual harvest? Or will the laws of natural abundance begin to kick in and adjust the math a little? We’ll find out!

Is it time to sell?

We’re pondering that question. But we’re going to be picky about our buyer. Stone’s Throw sits on three city lots. Right now, plots like ours are being bought by developers, bulldozed, and then repopulated with trendy “tiny homes” that go for half-a-million each. It’s not even affordable housing!

If and when we do sell, it will likely be a privately negotiated sale, to buyers who will care for the microfarm and continue the Stone’s Throw brand along with its educational efforts. Stay tuned, and do reach out to us if you know of a young, strong individual or couple, eager to take over a vibrant small-town, high-elevation, educational urban-farm!