Support Bethany's Launch of Soul Spun Healing

[Quick note: Fundraiser is listed as 'on behalf' of Karen Schmid because Bethany's mom is temporarily holding the funds in her account]

***

Jordan here, reaching out to you on behalf of my dear friend Bethany. I have known Beth for about 16 years now and have watched her flourish through many seasons of life, growing into an incredibly beautiful and kind human being. Over the last five years, she has been dealt an incredibly challenging hand of cards which led to the complete upheaval of the life she once knew.

If you haven’t heard the details of Beth’s story yet, you are in the right place. After months of begging, Bethany has agreed to share her story with her greater community and let you all in on the struggles she’s endured as well as the medicine work that she’s been dreaming up. Please lend her your attention, any resources you have to offer, and your abundant sharing of her story!!!!

***

Dear friends,

I’m writing to share a little more about my experience with illness these last several years, and to ask for your support -- including with the launch of my new li’l business!

First, many thanks to my badass and unwaveringly compassionate friend Jordan, who has encouraged me for quite some time now to ask my community for help. It’s really hard to do, but I finally see more clearly the ways in which we are all connected, and the ways we all need each other. You’ve each been a part of my web in one way or another, and regardless of any financial contribution, I hope you know I care about you -- and miss those of you I have not been in touch with!

I feel broken open in many new and tender ways these last few years. While I’m terrified of actually sending this out, and also very much feel like a stereotypical oversharing millennial, I also know that I am extremely fortunate to have people who care about me, and probably would like to know more.

This world clearly needs more honesty and connection, and more grace for the full spectrum of our feelings and our failings. So in that spirit, here we go!

Warning: it’s a long read. As a few of you know very well, this seems to be the only way I communicate by written word…#sorry not sorry

Once Upon a Time

Funnily enough, it all began with a toothache.

It was 2019, and I was working for a humanitarian organization in Baghdad, Iraq. That one toothache led to a root canal from hell, involving multiple recurrent infections and 12 appointments across 3 countries. Between the antibiotics, frequent illnesses, and subsequent unrelated injuries in my spine and shoulder, by mid-2020 I was in pretty bad shape. I’d lost a lot of weight and was unable to eat nearly anything, felt dizzy and nauseous 24/7, and was in constant agonizing pain that kept me from sleeping.

At the same time, I was working nonstop in a Sisyphus-esque job, with the added bonuses of WAY too many megalomaniacs and a racist hierarchical humanitarian landscape. I felt like a cog in a very broken machine, just trying to get through each day and do a microscopic amount of lasting good, while living far away from family and friends in the midst of political turmoil, violent protests, …and the pandemic.

By the time I quit my job and moved back to the U.S. to live with my parents, I felt broken in mind, body, and spirit. I was mostly bedbound for months, and had developed dozens of bizarre symptoms across multiple bodily systems, including debilitating fatigue, vibrations and tremors, intensive brain fog, every gut symptom you can imagine, and constant pain. The cognitive effects were the most alarming to me: I completely lost my ability to prioritize - any sort of decision completely paralyzed me for hours, I could not focus on a task (even watching a show) for more than a couple minutes at a time, and my memory was full of gaping holes. I did not recognize myself anymore, and was battling relentless mood swings, depression, insomnia, severe anxiety, and daily/nightly panic attacks. I had no idea what was wrong with me.

Throughout 2021, I saw a plethora of specialists who ran a battery of tests, but walked away with the same symptoms and no confirmed diagnoses. I’d already had a significant chronic and mysterious illness back in college (hot tip: parasites are more common than most people think!) and it felt ridiculous that it could be happening again. It was like I was living the same old tired story: feeling absolutely terrible, barely able to function, and yet being constantly dismissed by health professionals.

In a desperate bid to reclaim my health, I spent countless hours (very slowly) researching in medical journals, attended every relevant online health conference I could find, and implemented anything and everything that was within my budget. From diets to supplements to neural reprogramming to vagal nerve toning -- you name it, I probably tried it. I wish that this was the arc in the storyline where against all odds and with sheer determination and grit, I managed to finally heal myself.

Unfortunately…nope.

At some point, I realized that I was spending significantly more time sleeping than awake, so I took the financial plunge and started seeing an incredible therapist as well as a functional medicine practitioner. Both were enormously helpful - the therapist in helping me untangle the role of trauma and safely reconnect with a body I did not feel remotely good in, and the physician in finding multiple additional root causes for my condition: chronic Epstein-Barr Virus, parasites (again!), mold toxicity, high levels of industrial toxins (especially glyphosate, which is found in most of our produce), and even markers for Lyme Disease.

I started new treatments and was feeling hopeful -- and then COVID struck. Like others whose underlying conditions led to the development of a chronic post-viral syndrome, my overwhelmed body couldn’t cope, and my symptoms took another downturn. I was in a lot of pain and deeply exhausted most of the time, needing to sleep for hours after small things like a phone call with a friend, writing an email, or a 10-minute walk. Realizing I could not support myself anytime soon, I moved to the Pacific NW, where my sister and her husband had a trailer on their property they kindly invited me to live in.

I also became a part-time nanny again for an incredibly supportive and kind family - only 5 minutes away! I was able to take a long nap each day while the child slept, and when he was awake, became pretty darn creative at finding ways to keep him engaged while I was sitting or even lying down. However, I was still sleeping most of the day away, and only able to work about 8-12 hours per week, which unsurprisingly, did not cover my basic needs. Many symptoms were getting worse and my body was in significant pain day and night: from body aches to joint pain to shooting pains to bone-deep electric pulses. Eventually, I learned that the trailer I was living in had high levels of toxic mold, which helped explain my worsening condition.

Around this time, I took the scary step of applying for disability - it felt like I was admitting defeat. I was denied a year later. I’ve appealed, and have three different doctors firmly supporting my case. While I clearly meet the requirements, the process is long, difficult, bureaucratic, and I do not have all the supporting documentation I may need to be successful.

Fast forward to today. I’m incredibly fortunate to live for free in someone’s guest house in exchange for animal-care. I have a supportive and affordable health care team. And I trust my own knowledge, body’s wisdom, and experience more than ever. While I have not yet made a full recovery, many of my symptoms are significantly better, and I feel like myself again. My chief issue is that the fatigue is still pretty debilitating: my physical activity is limited to 20-minute walks, I can’t work more than about 12 hours per week, and I have to be very strategic with any additional mental or physical exertion or risk “crashing” in bed for hours or days on end.

At some point, I went from having zero diagnoses to too many: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID, mold toxicity, fibromyalgia, endometriosis, dysautonomia, and POTS - and this is not an exhaustive list. We sure love our labels. However, I don’t hold onto any of them too tightly. Several are diagnoses of exclusion and/or cannot be 100% confirmed through available testing, many overlap, and most are descriptive rather than helpful in finding and tackling root causes. I’ve worked hard these past years to stay open to the unknown, not over-identify with any illness or symptom, and thereby, (hopefully) avoid subconsciously limiting possibilities for healing. Sometimes, I fail.

As I look now at the full picture of my health, I see it less as a series of unfortunate events and mistakes (though there were plenty of both), and more as a shockingly common story of what happens when a sensitive body is exposed to the many stressors of modern life. We live on a poisoned and inflamed planet - is it any wonder my body, an organism inextricably intertwined with our environment, would react the same way? Yet it’s not just the viruses and bacteria and toxins - it’s the way we treat each other, the downstream effects of colonialism and capitalism, the myriad ways in which rampant, unchecked greed has set our lives on fire. I often have felt these past years like a canary in a coalmine - one of many fragile birds desperately chirping her warning, to no avail.

The Naked Truth

The hardest thing for me about being chronically ill is not what I expected. It’s not the debilitating fatigue or wide range of painful and uncomfortable symptoms. It’s not the anxiety or the panic attacks or the insomnia, or even the soul-numbing depression. It’s not the constant ebbs and flows, the false hopes, the unpredictable relapses. It’s not the slow unraveling of my mind, or the stripping away of everything I thought made me, me. It’s not grappling with the nature of a mysterious complex illness that has no simple answers in traditional, compartmentalized, western medicine. It’s not being utterly overwhelmed by the sheer amount of extremely confident opinions online. It’s not the grief for all I’ve lost: the missed opportunities for joy and pleasure, relationships that have crumbled, my career, my savings, the simple joyful movement of my body. It’s not watching everyone I know continue on with their lives and care for others, while I struggle, mostly stuck and in bed, just to care for myself. It’s not the dependence on family and the government simply to meet basic needs. It’s not even living well below the poverty-line and watching my savings dwindle away as I try treatment after treatment. Each of these things are absolutely challenging, make no mistake.

But the hardest of them all?

It’s feeling invisible.

It’s the dismissal by doctors, and even by loved ones. The lack of empathy and understanding. The isolation. The way being mysteriously and chronically ill is somehow shameful - a flaw or weakness, and therefore less worthy of compassion or care.

I know I’m not alone. I scour the message boards; I receive the newsletters; I attend the online health conferences. Over and over, those with mysterious chronic illnesses note the same heartache: not being taken seriously, being dismissed by health professionals, the invalidating of an immensely difficult lived experience, being labeled as selfish or attention-seeking, receiving a distinct and painful lack of compassion from friends and family, dropping through cracks in the system, and more.

When care becomes conditional, I believe it harms an essential part of what it means to be human.

We have a fundamental need for care, compassion, and connection: for love. Yet we are told over and over, in word and deed, that only certain ailments are worthy of compassion, that only parts of us deserve love, that only some emotions are acceptable. We need only look at two seconds of the news cycle to see that even only certain people deserve lives of peace and safety. As we weaponize our deepest wounds and exile the pieces of ourselves deemed too painful or unworthy to welcome in, so too do we exile those around us.

A Wee Bit of Background

ME/CFS, my umbrella diagnosis, is a challenging and stigmatized condition. I think one of the many reasons it is so misunderstood is due to its key symptom of chronic fatigue.

You’re tired?

So what. (Everyone is).

I realize that to anyone who has not experienced this condition directly, spending days in bed can sound immensely luxurious. That seeing someone who (usually) looks fine but is always complaining about being tired is, well, tiresome. There’s a strong urge to say: Hey, drink some coffee already. Get on with your life. You’re “just” depressed. It’s all in your head. Snap out of it.

I’ve said all this, and much crueler things, to myself. But finally, the reality has sunken in. No matter how hard I’ve pushed myself, how many times I’ve gone over my limit - it has not worked. Not once. It’s well-documented that the post-exertional malaise characteristic of ME/CFS does not respond to the usual medical advice on exercise and conditioning. People with ME/CFS have, for a variety of reasons (i.e. toxic overload, psychological trauma, parasites, viral and bacterial infections) become overburdened on the deepest of levels. While still somewhat mysterious, more and more research is coming out about the links between ME/CFS and factors like troublesome detoxification genes, damaged and depleted mitochondria, and the cascading effects of chronic inflammation.

As a result, I cannot build up my capacity in the same way as someone without this condition can, and have to stay under my threshold or risk “crashing” in bed for hours, days, or even weeks. This is unbelievably frustrating, not to mention nearly impossible to avoid when by necessity, I have lived so close to my limits that doing some health research, going to an appointment, or chasing a toddler around the house for a few minutes, have all led to shockingly long crashes. The word “fatigue” cannot fully convey the bone-deep necessity of immediate sleep caused by any kind of physical or mental exertion, especially in the more acute stages of this illness.

And this has very real and often severe effects: many of those with ME/CFS are bedbound and/or unable to hold a steady job, let alone take care of their families. For those without the financial means to support themselves through this period, which can last years, decades, or even a lifetime, this condition can be devastating. As difficult as this experience has been, I’m incredibly fortunate to receive both government and family support, as well as multiple kindnesses from both friends and strangers. This is not the case for many others, who experience their illness alongside a lack of social support and financial safety nets, systemic racism, immigration challenges, and more.

It’s also true - in part due to my great fortune - that this illness, and the forced rest and stillness it brings, is pretty luxurious. I‘ve had an abundance of time and space to engage in inner reflection and growth, to explore my shadows, to discover what makes my soul sing.

Some say that illness, and other forms of suffering, can be our greatest teachers. And slowly, I’m learning. I’m learning how to live in the tension between the best and the worst that life has to offer: the tragedies and heartbreaks, the senseless and the soulful, the lovely and the absurd. I’m learning that there is more space within myself than I ever imagined; that I am free, in every moment, to choose how to be. I’m learning to accept a fluctuating and challenging reality moment by moment, while still holding forth a strong vision of what my most meaningful life would be -- and working on how to be there, now. I’m learning to view myself and others with less judgment and more compassion, to see that we all have many parts to us that yearn to be expressed, and to be healed. I’m learning that our stories of suffering can be stories of freedom and awakening, too.

The Biz

Which leads me to…dun dun dun, the biz!

Very soon, I’m planning to launch Soul Spun Healing, a project for those healing from chronic fatigue-related illnesses (think ME/CFS, long COVID, Chronic Lyme, fibromyalgia, and more). As of right now, it includes a) a free bi-monthly newsletter on individual and collective healing, b) 1:1 sliding scale sessions with me for those looking for further support in navigating the healing journey and c) a pilot “Healing Circles” group support program and online community. It’s based on the premise that true healing involves recognizing our innate wholeness: within ourselves, with each other, and with the earth. I’ll send out an update once the website is live, and ask for your help in spreading the word!

But in the meantime...

The Ask

While ill these last 5 years, I have only been able to take ad hoc hourly jobs that allow for a very flexible schedule and many opportunities to rest/sleep. The amount I can make from this type of work does not cover my basic needs, let alone my health expenses, let alone anything close to the market-cost of rent. I am moving to a small farmstead next month where I will work part-time in exchange for rent, and focus on getting Soul Spun Healing off the ground. It's going to take some time.

It feels strange to ask for money in this world of endless need, and with a genocide occurring as I write. However, if you are able and feel called to support my health and my future plans, I am incredibly grateful. The money would go towards my medical bills, current cost of living as I work towards self-employment, and saving up for future mold-free stable housing (hello, tiny home!).

Whether you are able to give financially or not - thank you thank you thank you for reading this all the way through, and know I am sending much love your way!