Support Walker's Recovery from Severe ME-CFS

walkerstorz.com

"Mere survival isn’t waking, living, dying or dreaming, but a painful, liminal state directly between life and death. I am rejecting survival in favor of life in its fullness. I am rejecting the “world” in favor of the earth, and in favor of the potential worlds that don’t marginalize me." –Walker Storz

In 2016, when Walker Storz was a 21-year-old college student, he became ill with Lyme disease, forcing him to leave school to focus on his recovery. Unfortunately, as the months went on, his health deteriorated, and in 2017 he was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). There are currently no standard treatments or cures for ME/CFS, so people with this diagnosis are left to largely figure out their own treatment and pathways through an inadequate and byzantine health care system.

Over the years, as Walker and his family have worked to navigate this expensive and confounding system, he has been diagnosed with multiple serious comorbidities that complicate his case. He has been diagnosed with craniocervical instability (CCI), a medical condition where there is excessive movement of the cervical vertebrae leading to instability which causes many debilitating symptoms. Walker had CCI fusion surgery as well as a lower spine surgery almost two years ago. However due to complications and issues during recovery the fusion was unsuccessful. Other comorbidities include Mast Cell Activation Syndrome (MCAS) and Hereditary Alpha Tryptasemia Syndrome. MCAS is a complex inflammatory disorder that causes mast cells to release an inappropriate amount of chemicals (ie histamine, cytokines) into your body in response to many triggers (ie mold, pollutants). Living in mold-free environments is a necessity to keep Walker’s MCAS symptoms in control. All of these comorbidities are common in people with ME/CFS and have each contributed to Walker's current state of severe illness.

What all of this means is that Walker lives in constant discomfort and, in recent months, unending pain. Walker has extreme auditory sensitivity, which means he can seldom listen to music or audiobooks. Additionally Walker is currently living in literal darkness, his eyes are always covered by a sleeping mask because of his severe light sensitivity.

For Walker–a musician, photographer, and writer– life has been stripped of the things he loves the most, not to mention any semblance of a normal existence of a job, an ability to make art, friendships, and community. Last summer, Walker wrote poignantly about living in a mere state of survival in Today’s American Catholic. It is quoted above but deserves a full reading (click on link) in order to understand this remarkable young man.

So why are we reaching out again today? Walker’s sister and constant caregiver, Samantha, recently provided this update:

Things keep getting worse, and honestly Walker has reached a level of illness that is scary to him and us….He has dealt with a lot in the past seven years--three major spinal surgeries, two minor ones, lots of emergency room visits, more pain than one can imagine getting through day after day, gradual recoveries and steep declines. But really he has never been this sick. We keep thinking back to past times that we did not view as good times in the moment, but now Walker will say "at least I had the ability to do x/y/z", x/y/z being something like getting in the car to go to urgent care without crashing for weeks afterwards, reading a book, watching a movie, sitting up for 10-20 minutes at a time, etc--things which were already limited, but which are now unreachable from Walker's current severely ill state of being.

This brings me to this new GoFundMe with a goal of $30,000.

PLEASE NOTE that money in Walker’s previous GoFundMe has already been used for Walker’s myriad of needs (the total raised at GoFundMe sites never reflects the money that has been spent).

Within the last few years Walker and his caretakers have been living in New Jersey in order to access certain medical specialists in NYC such as his neurosurgeon. This has included staying at hotels as well as camping as often as possible because spending time outside helps greatly with his MCAS symptoms. We are now moving away from New Jersey to try to set up a more stable situation and take a more holistic approach. We are in the process of moving to New Mexico where we have family support, and setting up a good medical team there. Walker has done well in New Mexico before as it is a better environment for his MCAS. We hope this will be a move that will help Walker to recover some, gain strength and try some promising treatments. This will also allow us to have access to some state benefits such as caregiver's pay and medicaid. This move will be a huge undertaking for someone as sick as Walker and a challenge for his caretakers but is necessary for his eventual recovery.

Here are some specific expenses your donations could help with:

Walker’s sister needs help with caregiving. She is currently doing all of it with occasional help from other family members and friends. We will not be able to apply for financial aid for caretaking until we have moved to NM.

Medications and treatments: Insurance does not fully cover many of Walker’s medications. Walker’s out of pocket is around $200 a month for palliative meds and another $150 for supplements.

Walker currently sees multiple different doctors, some of whom are out-of-network specialists (average one-hour consultation is $800!). This is a necessity and the family is very grateful he has a great team of specialists, however it is another huge cost.

Hotels and other housing: Recently Walker has had to stay at a hotel close to NYC for appointments with his neurosurgeon and other specialists. Hotels and AirBnBs are costly, around $500 a week. In the next few weeks as we prepare and make the move out west we will have continuing housing costs.

Walker recently ordered a WeRoll Trailer to make camping more accessible and comfortable, and so that he can have a mold-free place to sleep in most locations. This is a huge step forward, however Walker and his caregivers still need a vehicle to tow the trailer. Your donations will help them secure a reliable truck or van. A conservative estimate for a vehicle would be $5,000-10,000 dollars.

Food and clothing expenses. Neither Walker nor his sister have the ability to bring in income, so they have to rely on donations for daily living.

Walker and his family are endlessly grateful for all the support and donations they have had through this whole struggle. With your support, they are hopeful that Walker will be able to recover and regain his strength over time. There is still a tough road ahead.

...

Hi all, we wanted to update everyone.

TLDR;/Summary: Walker is currently at the lowest point in his health and is becoming progressively worse. His illness is becoming so severe and if we don’t change the circumstances it will become exponentially worse and harder to recover from, as time goes by. It is a huge struggle to maintain health with ME-CFS, and it is only going downhill. At this point, the most urgent priority by far is finding/funding a consistent second caregiver - followed closely by a stable mobile shelter.

WALKER:

Walker continues to have light and sound sensitivity. For the most part he can’t use his phone, read books or listen to music/audiobooks. His daily quality of life is at its lowest. He hasn’t been well enough to get to his mandatory pain doctor appointments because moving in this condition is too much for him. It has been very difficult to communicate with others due to his light sensitivity - because he wears an eye-mask most of the time.

We are in the process of getting New Mexico Medicaid which has been a lengthy and convoluted process. We have an appointment in a month - and it may take a few months until we can begin to receive caregiver’s pay. The financial, practical and medical realities are not sustainable for much longer. Due to Walker’s diminishing health, it is not possible to wait on getting caregiving help or a stable living situation. For this reason it's a desperate situation as it comes to fundraising, caregiving and day-to-day life - and it continues to get worse.

MOLD AVOIDANCE:

Many people have asked how he’s doing since arriving in New Mexico. To explain a bit about mold avoidance, it’s based around finding and spending a lot of time in pristine areas (often in wilderness) with good air - in an effort to avoid the toxins and contamination that severely impact his health. This is often in rural, remote areas - away from cities. In the past, this has worked very well for Walker’s health. Before getting COVID 19 in March 2020 he had a partial remission which was really impressive. He went from being bedridden with constant brain-fog to walking ~1/3 mile without crashing. He was able to be upright without POTS symptoms (which are debilitating), as well as read some novels. The difference was day and night. We wish we had documented this more, as visual proof is sometimes the main thing that convinces others of the value of such treatment. However, this took a lot of effort and caregiving to attain, and his health is far worse now than it was then. Walker has come across some areas in New Mexico with very healing air, but they are not accessible to him without a second caregiver.

CAREGIVING:

Walker and Sammy are in desperate need of an additional caregiver. Currently Sammy is his sole primary caregiver, and the few times they’ve had temporary help have not been consistent enough to make a big difference. This is all unsustainable for Sammy (who this has been very hard on) - but also means that many of Walker’s needs are neglected. Given the ongoing struggle to fulfill Walker’s basic medical and personal needs - Walker hasn’t been able to practice mold avoidance in the sense he did before, which in the recent past has done the most to help him. This is entirely unsustainable for both Walker and Sammy.

Part of this challenge is financial; they have been spread so thin financially that they haven’t been able to pay large amounts for caregiving. They have had some family/friends generously donate their time, but ultimately they don’t have the funds to pay and retain someone full-time, as they end up needing to make a living elsewhere. It has been greatly beneficial to have those who know Walker and his difficulties help - and an increase in fundraising would allow us to retain these caregivers and provide some regular stability and support.

Walker’s mom works very hard to support, but doesn’t have enough free time to do regular caregiving, despite living in the same state. Even with her financial help and Walker’s SSI money (which isn’t very much), it’s not enough to support Walker’s housing, medical and caregiving costs. Additionally Walker and Sammy aren’t easily able to live in the same area as their mom, which presents an additional challenge as it comes to caregiving. Walker’s mom is supporting financially as best she can, but they are still deeply struggling to get these needs met.

Walker does know of about 3 people (aside from his mother) in the state who have generously offered to help but who may not be able to do it full-time, and are in a different area of the state. Ultimately they had to leave New Jersey due to expenses, and arrived in New Mexico without a large enough support network to sustain themselves. Finding and funding regular caregiving support is the #1 priority.

FINDING STABLE SHELTER AND ACCESSIBILITY TO NATURE:

When Walker first started in 2019 and 2020, he was healthy enough to do tent and tarp camping (even though this still required a second caregiver). This had a profound impact on his health at the time, as detailed above. The sicker he’s become, along with his neck and spine problems - he now requires a regular bed, which makes it more difficult and labor intensive to do this kind of mold avoidance. Right now he is unable to camp in this method regularly.

An alternative that has been proven by others who have gone through this is a MECU (Mobile Environmental Containment Unit) - which is a mobile, neutral living space that isn’t prone to toxin accumulation. The ideal set-up would be a combination of a cargo van with a bed in it (which Walker needs to travel laying down) - and a metal cargo trailer (which doesn’t accumulate mold and toxins). This can be fairly expensive, but would provide Walker and Sammy regular housing and the ability to practice mold avoidance. They currently have a minivan, but this doesn’t provide enough sleeping space for two people - and is too short for Walker to easily transfer in and out of. A cargo vehicle would be more physically accessible for Walker given his proportions and disability.

FUNDRAISING: resources on this illness

Walker and Sammy are treading water financially while waiting on caregiving and securing a mobile shelter/cargo van. It has been extremely hard physically, financially and emotionally on Walker and Sammy. They came to New Mexico as it can be a healing place, but also because they quickly had to leave New Jersey due to expenses. They didn’t and still don’t have enough of a support network to make this transition work easily - and Walker’s health has been going downhill fast. He hasn’t ever been this sick before, and doesn’t have the support or resources he needed.

Even in cases where someone isn’t doing mold avoidance and doesn't have these associated costs (trailers, etc) - the costs of caregiving/medical care for people with severe ME-CFS are often very extreme and far exceed what’s affordable for a middle-class household. Whitney Dafoe is one example - given the severity of his illness, his costs were more than 100k annually, out of pocket. The initial costs of doing mold avoidance are expensive - but our hope is that it does save money long-term; and that it can get Walker better enough so he doesn’t need a feeding tube, a full team of professional caregivers, and all the things you start to need in very severe ME-CFS.

This is a low and very dark point for Walker, and while we know there is a path for his recovery, it will require an immense amount of effort and resources to reach. Your support is especially welcome and appreciated in this trying time.

For more resources around this chronic illness, please see our link: https://linktr.ee/walkerstorzrecovery