Battling Severe Myalgic Encephalomyelitis

Beloved Community,

There's a deep level of humility and courage that comes with posting your story and moving into a state of receiving. I fought posting for years out of intense fear and because I could marginally subsist at the time, but there comes a point when you need the world more than you ever knew.

My name is Caitlin Leahy, I am 34 years old, and was diagnosed with Myalgic Encephalomyelitis (ME) in October 2020 after over two years of rapidly declining health without answers. ME is a rare neurological disease (also called a neuro-immune condition) characterized by a highly dysfunctional autonomic nervous system, along with brain, brainstem and spinal cord inflammation. So what does this look like? I am often bedbound for long stretches of time, in 2022 this lasted for 7/8 months. I cannot even walk down a set of stairs. In 2023, I've already been bedbound for over 3 months. When I am not bedbound, I have extremely limited energy stores that if overworked, will result in crashes and neurological flare-ups, so I am majority housebound. I have severe tachycardia (rapid heart rate) that is exacerbated by the smallest of tasks, including getting the mail or speaking on the phone. My concentration and cognitive function are extremely diminished. I have extreme insomnia that greatly impacts functionality and creates a perpetual catabolic state (muscle breakdown). My immune system is compromised and I can only tolerate about 10 different foods without my body attacking itself. I've lost more than half of my hair due to downstream effects on my thyroid.

This disease has no cure and no resounding treatment method in conventional medicine. After over two years of battling this disease, I could no longer continue to push myself to work. In September 2020, I left my job and have not returned.

I found great relief in a naturopathic specialist, Dr. Andrew Neville, director of the Clymer Healing Center in Quakertown, Pennsylvania in October 2020, who diagnosed my condition which was immediately confirmed by my primary physician at UW Health. The Clymer Healing Center only treats patients with ME and has done so for over 50 years. After years of trialing medications and supplements, and the horrific side effects of going through that process, I finally found prescription supplements through the Center that worked. Since figuring those out, my condition has improved but is still incredibly severe.

In July 2021, I applied for disability. I had 10 doctors' letters of support (all MD's and PhD's) along with lab data, but I was denied. I appealed the decision in April 2022 and have since gone to Cleveland Clinic to have more testing done to advocate for disability, and have had many more doctors' letters of support added to my case. It takes at least a year to get a decision (so, each application period and reconsideration period takes at least one year). On my last call with my disability case worker in late March 2023, she said, "...based on your age, you would need a terminal illness to get disability." It is very hard to get disability in the U.S., especially with a rare condition like mine that doctors cannot even diagnose let alone treat. I believe the process of trying to acquire disability has accumulated so much intense stress, that this is halting any progress in my condition, and in fact, making it much worse.

After battling this disease for over 4.5 years, of trying modality after modality, many of which have helped, I knew there was something more to this condition, to the world of chronic illness, that was beyond the methods typically in place for treatment. After reviewing hundreds of recovery stories - which is possible - I found that neuroplasticity was an important key. Neuroplasticity is training or rewiring your brain to stop, essentially, attacking the body. It is important not to confuse this with psychology, but instead, understand this as a physiological methodology. This type of treatment would apply to all diseases, but it is profoundly effective in the neuro-immune conditions (ME, autoimmune illnesses including MS, and more). Yet, there is another key component here that is vital to healing chronic illness, which is stored trauma (physical, mental, environmental, emotional) in cells. Experts in this field include: Gabor Mate, MD; Bessel Van Der Kolk, MD; Donna Jackson Nakawaza; Peter Levine, PhD; and many more.

After going through all types of conventional and alternative medicine treatments - with alternative medicine/healing making leaps and bounds in support - I know this area is the last explored, but the most important and I believe, the only way to make long-term progress.

Why I need you:

It's crazy that when you get sick, your life gets infinitely more expensive. The irony of this is astounding. My family spends thousands upon thousands each year on treatments for this disease. One treatment in late 2022 cost $11,000. I rely on a portion of my mother's (age 77) and her husband's social security check along with my father's (age 79). I also rely on my brother. This has become unsustainable and incredibly hard for us. The stress and fear surrounding finance has a profoundly negative effect on my illness, and is, indescribably, a horrific loop to experience. I wouldn't wish it on anyone. I want, as we all do, to feel safe and to have security. Having the funds to support my healing is the only way I can heal, and so I look to my community now for your help.

What your donations will be used for:

Lastly, I want to say, as so many do when they experience great physical illness, that once your health completely dissolves, you realize it's the only thing that ever, ever, mattered. I know, one day when I recover, as I will continue to believe I will, everything I have so intensely researched and experienced for years, will come to the aid of so many others with this condition. And, by supporting me, you will have contributed to and greatly impacted that divine effort.

--- Before I close, I'll quickly introduce you to who I was before my illness (and of course still am inside), and, perhaps, what has changed internally as a result of my illness. As a small child, like many energetic toddlers who felt they embodied the spirit of Pocahantas, I was in love with nature. The sights, sounds, smells, interactions...I was inseparable, a completed unit. So, naturally, I became an environmental scientist with a background in policy. There were some bends and turns before discovering where my efforts should be concentrated, but felicitously, I found my calling.

Before becoming ill, I worked in the agricultural sector to mitigate nutrient loading in the Great Lakes and Mississippi River Basins. I collaborated with every piece of the supply chain, notably working with agricultural retailers (those who manage farm fields and sell ag products) to integrate conservation practices on working lands as well as universities, including Michigan State University and Purdue, to devise studies (and write multimillion-dollar grants) that would calculate economic data from environmental services and provide cost-shares, making practices appealing and more easily implemented for farmers. I also worked with top executives at General Mills, Applegate, Ocean Spray and other big names, to further their regenerative agricultural practices.

But enough about career, I also volunteered for the Madison, Wisconsin Chapter of the Slow Food Movement, working at a local community center to cook nutritious meals and serve them to underprivileged locals. I was in salsa classes and participated in a 4-person singing group. I have always been an obsessive hiker, and would hit the trails around 2-3 hours almost daily and 5-6 hours on the weekends (and/or be at the gym or go running). I liked going to Meetups and doing new things and meeting new people.

When illness strips you of work, of your hobbies, of all physical ability, you're essentially left with the soul. The identities that formed you (hiking, nature, environmental work, even friendships) are dismantled through an incredibly painful process, and you reside in small (but large) inner spaces. Meditation becomes essential to functioning (many hours a day), spiritual work is as important as air, and protecting and loving an ill body is the legacy of illness. Something new is birthed from the wretched, putrid, and oppressive, just like the lotus. An expansion of compassion, a dropping of separateness and judgment, a return to a unified and constant frequency. You're embodying a new consciousness. When I heal, I can't wait to hold and expand this consciousness in every aspect of my life. That is what I am most excited about (well, and hiking); I just want to hold others in a way in which I was forced to hold myself, through pain unimaginable. --

I'll end my story here. Any donation amount is beyond of help and I promise to bless each contribution with an intention that the abundance you share will be met in any form back to you threefold.

My deepest and sincerest love, gratitude and appreciation for your donation and your existence,

Caitlin XOXO