Urgent support needed for Sheryl Kent

Sheryl Kent is an inspiration. She has spent her entire life giving of herself to family, friends, and complete strangers through a career as a healer, educator, non-profit leader, and community builder. In her other full-time career, she’s an incredible mother to her 15-year-old son Kai, who has Down syndrome. She accomplishes all of this with passion, grace, and excellence.

She is a superhero, and now she really needs our help.

Sheryl has recently been diagnosed with early-onset Parkinson’s after a very long, often brutal, indirect, and expenssive diagnostic process. She has been experiencing debilitating pain, is constantly shaking, has lost much cognitive function, lives in perpetual exhaustion, can’t care for Kai as she once did, has been unable to work for two years, and is facing significant expenses as she leans into seemingly insurmountable challenges.

But Sheryl has always been a fighter—she is choosing to delay treatment that would alleviate her suffering in order to help others. Sheryl is entering a six-month clinical research trial on PD diagnosis so that future Parkinson’s sufferers (especially women) will be diagnosed much earlier and get better treatment at the earliest stages.

How we help:

1. Contribute financially, at whatever level we are able, to help offset medication, equipment, physical therapy, home support, and already incurred medical debt.

2. Share the link for this campaign on your social channels, including your own words of how Sheryl has impacted your own life, or someone you love.

3. Love, support, and prayers as Sheryl continues to put others before herself.

Here’s the ask.

Asking is hard for us, and we know everyone faces challenges. We are in unusual circumstances beyond our capacity to face alone, and we are reaching out to you, our loved ones and our community, to ask humbly for your financial support to help us stabilize and prepare for the road ahead.

The goal in this current fund-raising campaign is $88,000. We know this is a lot of money, and it’s going to take many, many hands reaching out. The #1 most helpful gift you can make is to share this campaign with as many people as you can — email it, text it, put it on your social media channels. Think of all the communities and circles through which you know Sheryl, and send a link to this campaign to everyone in those circles. Or think of the people in your life who may feel compassion for this challenging journey and share this ask. Thousands of dollars for campaigns like this can be raised from people who have never met the beneficiary. You sharing can make a bigger impact than you know!

Contributions will go towards:

• Paying off already-accrued medical debts ($25K);

• Purchasing the equipment, systems, medications, and various interventions needed to maintain health and delay symptoms ($16K);

• Supplements, and complementary interventions such as acupuncture, physical therapy, cold-water swimming, boxing lessons (yes, as in “put up yer dukes!”), therapeutic stationary cycling (Estimated at $15K).

• Living expenses support them while she rests, restores, moves through the clinical research trials, and moves through the titration of new medicines, that has been suddenly supported by a single-earner income — a self-employment income that is based on hours worked, so no medical leave, no paid time off, no salary ($22K);

• Hired household support during clinical trials and adapting to a new medicine regimen that comes with erratic side-effects and mood swings as the right drug and dosage is pinpointed ($10K);

Whatever amount you give today (even $5!) will be received as a love poem, a point of contact from a caring heart at a time of hardship. Your gift is a vigil for Sheryl and our family.

If it’s a stretch for you to make a substantial gift today, consider making a smaller monthly contribution. If you wish to make a monthly, quarterly, or annual contribution, please contact us directly to coordinate.

We love you all so much, and are so grateful for you. Thank you for reading, for giving, for sharing. Thank you for standing by us, for holding us. We’ll send regular updates through this campaign, which will be emailed out to everyone who participates.

For those who want to know the back story, please continue reading below.

Two parallel stories, both are true.

Story one: The nuts and bolts of her medical journey, subsequent diagnosis, and the ask for support.

For many years my partner Sheryl had been experiencing mysterious, erratic symptoms, that were manageable and had only a minor impact on her life as an active, energetic, engaged professional, partner, friend and mother. These symptoms included occasional, severe panic attacks, extreme blood pressure spikes and drops sometimes leading to loss of consciousness, vertigo, GI distress, increased muscle cramps, and increasingly severe PMS. Then two years ago, Sheryl’s health suddenly dropped out beneath her feet. Over the course of days and weeks she stopped being able to sleep or eat, her previous symptoms spiked, especially an unrelenting state of panic, and she was having fevers and extreme pain in her gut. She experienced a terrifying and debilitating loss of cognition and her balance tanked, leading to falls. Existing in this state for over a month led her to complete exhaustion and breakdown. And a new, highly distressing symptom emerged: she began shaking. A shaking that started in her extremities, then moved into the core of her body, that has not let up since. It was the beginning of a nightmare.

My beloved partner, of indomitable spirit and body, had been brought to her knees, and it has been the single greatest challenge of both of our lives. I don’t say this lightly, after also having faced my own mortality a decade ago through an uncommon autoimmune disease that very nearly claimed my life.

It’s been terrifying and heartbreaking to watch Sheryl’s debilitation over the past twenty-four months. I watched her be stripped of her extraordinary ability to show up in the world in ways that she and so many of us take from granted, — from having a trustworthy memory and cognition; to the capacity for social interaction; the energy and coordination to cook, clean, do laundry, garden, mow the lawn; the ability to adventure, kayak, backpack; and so many of the basic things that make up the fabric of a person’s life, her life, were taken.

Painfully, She lost her ability to work as a cherished therapist with a full client load and a long waitlist — all of whom she loves with her whole being. Sheryl is a fiercely independent woman who has been deprived of her ability to earn and support herself. It has been a grave loss of dignity for her, not to mention the gaping hole she’s left in the lives of her former clients and our community. For our family, the loss of income has been staggering. Add to that a pile of medical bills accruing from rejected insurance claims and hefty copays, out of network treatments, emergency room visits, a lengthy in-patient stay, and countless tests. Our debts have never been so high, so suddenly. I’m working as much as I’m able to fill the gaps, but it’s just not enough.

But the most heartbreaking challenge has been in her growing struggle to parent her 15 year-old son, Kai. She just doesn’t have the energy, endurance, or coordination to do it for extended amounts of time anymore. And we know parenting is the fullest, full-time job there is, that is often doubled with a kiddo with special needs. I’ve stepped in more, as has Kai’s dad, Alex. But he needs more, he needs his mother, and she needs support so she can bring more of herself to Kai who has watched her changes with fearful eyes and grief that she just can’t show up like she has in the past. Two men with full-time jobs just can’t fill a mom’s shoes. We need more help in the daily home routines and income needs so she can turn the energy she does have towards Kai.

During this two-year period of growing mysterious and terrifying debilitation, Sheryl has undergone a slough of invasive tests, false diagnoses, counteractive medications, many trips to the ER, expensive alternative treatments, and utter insanity as medical professionals shuffle us around and miss the mark. She’s endured this all while constantly shaking (which by itself is utterly exhausting), not sleeping, dealing with acute pancreatitis that went months undiagnosed, increasing GI distress, brutal headaches and a whole host of other co-occurring medical problems.

Even during this exhaustive and demoralizing experience, this amazing woman has shown more tenacity, positivity, patience, trust, and fortitude than you can imagine. Sheryl is the most inspiring person I have ever known. And watching her struggle and fall apart beautifully these past two years has given me new levels of respect and awe for her, and for life. And, much of our tenacity came from the hope of a treatable diagnosis that would give her back much of what was lost.

The Diagnosis, the Disease, the Path Ahead

Finally, on June 12th she received the diagnosis of early-onset Parkinson’s — a rare disease that affects the body’s normal ATP and mitochondrial processes leading to cell death deep in the areas of the brain that produce Dopamine a neurotransmitter responsible for coordination and motor planning (and so much more). In addition, the disease leads to diminished norepinephrine production. Put together these losses cause tremors throughout the body, extreme fatigue, loss of cognition, increased mood disturbances leading to anxiety, panic, and depression (especially in women), and will eventually cause the loss of muscle function, including her throat’s capacity to swallow or speak.

Parkinson’s has no cure, only management.

Initially, we were utterly devastated. With a diagnosis like this, we were given a glimpse of the future so few of us get, a look into our mortality, and the slow path of degradation and loss that may eventually come to every person with Parkinson’s, if they don’t pass by other means. We’re facing a terrifying list of physical and psychological challenges that come with this disease, while simultaneously grieving the possible loss of many future dreams, and the fears of an uncertain financial future due to a loss of her ability to work/earn income over time.

Many of you when first hearing the news felt a devastation similar to what we are living. We are faced with the harsh lesson that terrible things can happen to anyone, and often hitting some harder. How can someone who had a life-threatening, emergency C-section birth of her child, also receive news of a Down Syndrome diagnosis for her child while learning that his life was in danger, now also be dealt this blow? How many dreams can be dashed before a person breaks? If you know Sheryl, you may know this answer, that people can be broken into a million pieces, only to become more whole, more real.

And the devastation we initially felt has been lessened and shifted to hope by the already humbling and overwhelming show of emotional support, as well as by the many of you who have been waiting for this GoFundMe campaign to start to send supporting funds.

Making meaning, continued service, and the path forward.

As we approach treatment, we have been informed of a clinical research trial on PD diagnosis, with a particular focus on the intersection of women’s health and Parkinson’s. The goal of this research is that future Parkinson’s sufferers (especially women) will be diagnosed much earlier, get better treatment at the earliest stages, greater understanding on the various sub-types of PD, and will get the much-needed support that comes when PD is managed along with the often-difficult intersection of the peri and postmenopausal process. Taking part in this research trial will mean that Sheryl will voluntarily forego treatment for at least six months, treatment that could improve the quality of her life for a while, to serve the common good. While this is not an easy decision to make, doing so gives greater meaning to her difficult, many year journey knowing it can help other women avoid the same. Participating in this research may also open doors for her to get even better support in her ongoing journey with Parkinson’s as it intersects with women’s health, as well as possibly opening doors to future clinical trials for treatment.

After the research trial, she will enter into the treatment stage, where there is often a very difficult adaptation stage when initially taking the medications that lead to side effects and changes in the body.

Story Two: A mythopoetic story of initiation for those of you who swim in these waters.

THE WAY IT IS

There’s a thread you follow. It goes amongst

things that change. But it doesn’t change.

People wonder about what you are pursuing.

You have to explain about the thread.

But it is hard for others to see.

While you hold it you can’t get lost.

Tragedies happen; people get hurt

or die; and you suffer and get old.

Nothing you do can stop time’s unfolding.

Don’t ever let go of the thread.

— William Stafford

Looking back on Sheryl’s adventurous life, it is very clear for all who have eyes to see, that she has been spinning a thread of many inspired fibers, that include adventure, nature connection, embodied experience, awe and wonder, service, resilience, community, dedication, deep inquiry and study. And, it is also plain to see that this thread is studded with countless beads of initiation, whether it be to initiate people into the wild landscapes; help initiate young girls into their adolescence while drawing out their power and possibility; initiate adolescents into young adulthood and into the marvels and grit of the world; initiate adults into soul and radical authentic belonging; initiate from woundedness into wholeness; initiate from injustice and oppression to resilience and possibility; and initiate from life to death.

Stafford speaks a stark truth, “tragedies happen; people get hurt or die; and you suffer and get old. Nothing can stop time’s unfolding.” We have all encountered the many faces of these challenges, and know that there is the danger of breaking apart and feeling alone and adrift, or coming together through a common purpose in service to life. At every turn in Sheryl’s life, she has turned towards a beautiful world in need, with love, hope, and a sense of adventure.

As difficult as this time has been and is for her, she also understands that this is a time of initiation into Cronehood, into Elderhood. She trusts that while the journey will be hard, she will cultivate a new perspective on life, just as she has throughout her years, and with this new perspective she will orient her gifts towards a new audience just as she has done throughout her life. She also knows that she can’t enter into and manifest/serve in this new stage of elderhood with the same intense competency and driven w of her youth. She has to approach this new stage of life with greater grace, humility (and she has indeed been humbled), and allowance of what is and how to companion people in life’s journey. She is being initiated into a community that none of us want for her, for ourselves, or anyone for that matter. This community of course is not only those with the Parkinson’s diagnosis, but also a community plagued by mysterious medical and psychological conditions. If you know Sheryl as much as I do, it won’t take much imagination to understand what a force she can be once her mind and heart find traction in the phenomena of Parkinson’s and difficult diseases.

As she faces her own initiation into elderhood, one that traditionally serves community and is revered and supported by community, she is needing the blessing of her community in this process, and the same dedicated support she has so generously given to countless others.

You walking, your footprints are

The road, and nothing else;

There is no road, walker,

You make the road by walking.

By walking you make the road,

And when you look backward,

You see the path you

Never will step on again.

Walker, there is no road,

Only wind trails in the sea.

Antonio Machado