I’m not doing great, but I pray you are.
First and most importantly, regardless of how much time has passed, please know that I’ve never forgotten about you, about us, about all the places we’ve been together and the many places we’ve hoped to go. This post is titled “Aftershock” because that’s what one of my brain docs suggested I might be experiencing, medically, but, honestly, over the past 4 years and across all aspects of my life, my personal richter scale has been registering a sustained 9.0.
The next most important thing for you to know is that nobody thinks that any of the things wrong with me have anything to do with cancer, or are life threatening or even life shortening. It’s just stuff that makes you sick and less able, but it’s not stuff that makes you dead.
Another thing I want you to know, up front, is that overwhelm is very real for all of us and while I want you to know, and hopefully learn from and maybe even be inspired by what I’m going through, it would break what’s left of my heart to think the process of learning about it would burden you. I invite you to receive this information by mirroring my emotional and psychological pre-set. Word: I believe it’s entirely possible that my medical problems stem from not being able to use my body for over 3 years, and the life-imploding stress of that opened wide the death-hormone production valve in my brain that didn’t get shut off until friends stepped in, late 2019, to ensure my access to care. Consistent with this theory, this most recent uptick in symptoms is caused by my August – September hotel-homelessness when the prospect of finding housing seemed most dire. Now that I am so completely relieved to have housing, even though my space is not ideally appointed, my symptoms are abating and I believe my next brain mri (Dec 13, 2020) will confirm stable masses and my next cortisol tests (Jan 2021) will show normal levels. If you’re able to join me in that belief, you’ll be part of helping to soothe my psyche, to close my brain’s death-hormone valve and to help me get strong in my physical body again. And because of the way human brains conspire, you’ll receive what you give. Hallelujah, everybody – for me, for you, for all of us!
The story lines of my life the past couple of years – hip, brain, vision, loss of income – crisscross and blend and build, it’s impossible to talk about them separately and I know that makes them difficult to follow – I’m sorry about that.
Ready? I’m not sure I am.
Hip: After blowing out my left hip labrum in September 2016, I didn’t have insurance to cover a replacement, I couldn’t walk well enough to continue to travel to teach, my revenue dropped by over 80% for the next 3 years when I became too ill to work at all.
Brain: In addition to limited mobility and constant hip pain, my body started changing in 2017, I started feeling sick in 2018, and by the end of 2019 I was seriously ill – I had put on over 40 pounds of central obesity, my face had distorted to the point that I was unrecognizable, my skin had thinned such that the backs of my hands were broadly abraded by friction from fabric or upholstery and the frame of my eyeglasses opened the skin on my nose and above my ears, muscles in my limbs atrophied to the point I could encircle my thigh in the ring of my thumb-to-thumb-index-to-index, I had recurring cognitive problems, severe fatigue to the point where I slept for 14 – 16 hours at a time, some days not able to get out of bed or stop sobbing. I still didn’t have insurance but I sought care at the local public health clinic where, unfortunately, their mission to serve does not include diagnostic pursuit or treatment for the types of things that were wrong with me. As a result, I was without care and my symptoms continued to worsen until November 2019 when friends stepped in to literally save my life.
Financial saviors: Friends Neil & Jojo and John & Andry paid for me to have the preliminary tests and scans that confirmed the presence of a metabolically raging pituitary tumor. I wasn’t well enough to live alone anymore so they paid for me to move to Oregon where another friend offered to take me in. My friends paid for medical insurance coverage so I could finally receive surgeries and treatment, all of which has been at Oregon Health Sciences University in Portland. The Oregon housing offer proved to be not-well-intentioned and when it came to an untimely, unexpected end, it triggered a chain reaction of costly and health-compromising problems that I’m still convulsing through. When I had no other housing options, my friends paid for me to live in a hotel two different times for a total of over 2-1/2 months. They’ve paid for my unmet living expenses for over a year. Their help has been an extraordinary act of kindness and support, and one I’ll never be able to fully repay.
Most people think that getting care leads to getting better, but sometimes it’s not that simple.
Brain: My tumor went into “spontaneous remission” in February, the data suggests it can take up to a couple years for symptoms to completely reverse out of you but for me, it happened more quickly. By April my cortisol and ACTH levels had normalized, and by May the inflammation was gone and I was back to my normal weight. I looked like myself again too, my skin thickened right back up, and I began to build back muscle in my limbs. Unless symptoms returned, I wasn’t scheduled for a follow up until the end of this year. After being hotel-homeless August – September, symptoms returned in October – 10 pounds of inflammation came back, my face changed again, my skin thinned. A November 3rd mri revealed 2 new masses on my pituitary and a pineal cyst.
In case you don’t know it, our brains are the consistency of soft serve, so having masses in there isn’t like trying to close a walnut inside a book, it’s more like putting a cherry on top of whipped cream. Lots of folks have masses in their brains and don’t even know it.
I do not assume the new masses are symptomatic because my surgeon said symptom aftershocks can happen because past cortisol poisoning damages the entire brain, not just the part of it pumping out the hormones. That means symptoms can be caused from past high levels, not necessarily because levels are currently high or in the process of building back up. He said these aftershocks can last and recur for any length of time. Or only once and never again.
The story I’m telling myself is that this is an aftershock, that it will pass quickly and it will probably be all the way to never before I have another one. In the meantime, we’re watching the masses to chart any changes, I expect my brain mri on December 13th and my January 2021 cortisol saliva tests to come back showing stable masses and normal levels.
My cognition issues are episodic; catch me in a bad-brain-moment/day and I glitch, struggle with word-finding, go completely blank and resort to charades, but in a good-brain-moment/day my words flow without hesitation and I’ll sound like I did before all this started. I can tell when the transition is happening – sometimes in mid-conversation – and it’s weird as hell, it’s almost like I’m seeing my ability to organize my thoughts ride off into my mind’s distance. I’m also newly, severely dyslexic, writing or typing anything takes an excruciatingly long time.
Because not all of these changes can be reasonably attributed to the normal aging process, I’ve been referred to a cerebral cortex neurosurgeon for cognitive testing but that department was completely closed for 6 months due to covid so I’m at the bottom of a wait list that’s been building since the early summer. I believe these cognition episodes are linked to the stress I experience when I don’t have stable housing. Autonomy is a critical component of mental health, and I’ve had very little of it for several years running.
Hip: I was originally scheduled for hip replacement in April but the surgery got covid-pushed until June. The surgery went great and my recovery was well ahead of schedule when, eight days after the surgery and while on a therapy walk, I was charged by 2 large, snarling off leash dogs and in the process of running backward to get away from them, the implant sank about 1/2 inch into the shaft of my femur. That meant that there was now almost 1/2 inch of space between the new ceramic ball of my femur and the new ceramic socket in my pelvis – my brand new hip that I’d waited almost 4 years to get now clacked like billiard balls on the break. I had to wait another 5 weeks to recover enough from the first surgery (anterior approach) to have them (posterior approach) saw out the first implant and put in a new thicker and longer shaft, and a new socket.
I stayed awake for both surgeries, I watched most of the first one and all of the second one, I have my femur ball from surgery #1 in the freezer and I also have the original implant that was removed in surgery #2. After both surgeries, I managed my own at-home care. I made audio recordings, daily, of my post-surgical experience, and have captured 100% of the details pre- and post- surgery, all of which will be included in my “Total Hip” bundle which I do not yet have pulled together but hope to by mid-2021. I have all the contraindications of both anterior and posterior approaches, and virtually every provider has told me I’ve asked questions none of their other patients have. As a result of my background plus my injury and the delay in getting help, I definitely have a unique perspective on hip injuries and replacements, and I can’t wait to offer that perspective to you and through you, to your community.
As far as continuing care for my hip, I’m in physical therapy to try and balance out my strength which was extra skewed from 3 years and 9 months of limping and not being able to extend my left hip. We’re also working on rebuilding the strength I lost to the muscular atrophy of cortisol poisoning and we’re focusing on my balance which is tricky because of my left eye going wobbly. I’ll be in physical therapy until July 2021 which is when we’ll know if my joint capsule has healed to the point where I’m cleared of all movement restrictions.
Vision: I started losing muscular control of my left eye in November 2019, and when my left eye goes wandering it causes me to see super blurry and sometimes double. I’m being cared for by the kind of eye surgeons who can correct for the drift but I may not be a candidate for the surgery since I have histoplasmosis-caused retina damage (subfoveal) in my left eye that complicates their calculation for which muscles to cut. When I see double, the fix for it is to close my left eye, and I’m getting better at remembering to do that. The 2 specialists who are helping me with this – orthoptist and strabismus – have designed some vision exercises we hoped would supercharge my brain’s uptake of data through my left eye and thereby motivate greater muscular control of it. We were going to repeat in another couple months the measurement testing to figure out if the exercises are helping but unfortunately, the exercises began provoking double vision so, unless we come up with something else that doesn’t make me see double, I’m not able to do anything actively to try and save the placement of my left eye. I hate that.
My next eye doctor appointment is December 22nd, and to give you an idea of what I’m facing as far as medical expenses go, his fees are between $300 – $500, per eye, and neither my medical insurance nor medicaid covers his treatment. I believe 100% of my vision problems are from the normal progressive deterioration of my histoplasmosis damaged macula, and I don’t think there’s any brain mass contributory issues in play.
If and when the time comes that my left eye is so googly that it distracts me because it distracts you, I’ll patch it.
Housing: Finding housing during a pandemic is hard enough, but trying to find housing during a pandemic when you haven’t been well enough to work for a year is a whole other level of impossible.
I’ve moved 6 times in 7 months.
For 2 weeks before and for 4 weeks after hip surgery #1, I was hotel-homeless but, every day of those 6 weeks of hotel living, I scoured online listings for rentals and I finally found a landlord on craigslist who was willing to take a chance on me. He spent hours on the phone with my friends who assured him they’d cover my rent, so he approved me to rent for $1200 a month one of his 5th-wheels that he had on acreage outside Rainier, Oregon.
There was no hot water when I moved in, the electrical had been ripped out of half the trailer, I learned from the county that the entire trailer was against zoning and land use laws, the power and septic were unpermitted. What’s worse, the wiring was so unsafe that the county, citing a “life safety” issue and giving less than 2 hours notice, had the power shut off. Throughout all that, the landlord remained unconcerned and unresponsive.
You don’t really get an optimal outcome from a third attempt at fixing the same hip, so I was 100% compliant with post-surgical restrictions and I micromanaged my recovery from surgery #2. When the county shut off the power at the trailer, it was too soon after hip surgery #2 to risk a fall by staying there without lights, and I didn’t have anywhere else to go so my friends paid for me to move back into a hotel. I was still using a quad cane to walk and was still on lifting restrictions so I wasn’t able to take much with me from the trailer to the hotel. With the trailer dark and unoccupied, someone broke into it and stole a bunch of my things including my checkbooks and most of what I’d need to restart my life – my video camera and some of my other tech. They caught him, he had an arson 1 warrant pending – that’s school, church or someone home – and because of that arson 1 charge, he spent several weeks in jail before they covid-released him. Through the help of his girlfriend, I recovered some of what he took, including my video camera. Now that I’m completely unpacked in my new place, I’m discovering more missing things. I don’t think I’ll ever know for sure what all he took.
It was at about that point that my dear friend Trina Furgerson, acknowledging how utterly hopeless my circumstances had become, said she wanted to start a fundraiser for me. We asked for help from our other dear friends Jennifer Hildebrandt and Merianne Paul Haug, and, after working on it since September, the 3 of them together are responsible for launching my Go Fund Me. Regardless of how the fundraiser goes, I am so very grateful for their concern and their help in getting it launched, and my gratitude for any contributions is really just indescribable.
Current Housing: After the county pulled the electrical service to the trailer, I spent another month in a hotel, the whole time again searching for a landlord who would consider renting to me but this time, I found one who is full of integrity and grace and kindness. She’s from one of the founding families in Rainier and I’m living in one of her properties that is large enough to easily accommodate a teaching and production studio. The downside is it’s drafty, there’s no natural light and the bath and kitchen need work.
It’s the first stable housing I’ve had in over 2 years and it’s more spacious and historically gorgeous than anyplace I’ve ever lived – and I’ve lived a ton of places. Any home is better than no home, but that’s only one of the reasons I’m so thrilled to live here.
I was never a fancy person or someone who attached my personal happiness to wealth. I’m overwhelmed with gratitude for simply having a safe, quiet place to live, to be renting from a kind woman who sees beyond what I currently am to what I might be once I’m better, and, mostly, for my friends who have saved me by paying for me to live and get care. When I have a safe place to sleep and rest, it provides me with my best shot at recovering enough to be able to get back to work. And about work, I have extraordinary plans for what I hope to create as “work” in my future and, as I hope you agree, these challenging experiences provide extremely rich nutrients for the ways I’ll be able to help others in the future.
Having space large and private enough to create revenue producing work is one thing but I’m also an artist, and I can make any place or anything beautiful. I’m piecing together a gorgeousness right here in this enormous, cold, dark place. I’m doing this in honor of myself, my friends who’ve sustained me, and my landlady – Jan Oliva Moon – who has so graciously welcomed me and who loves my vision for the space. I’m claiming it all in service to those I seek to serve – you!
I’m in full renaissance mode. Most of my belongings sat in a wet barn in Astoria for 9 months and many of my soft goods were ruined. To illustrate how filthy and hostile the environment was, in my framed photos, there were dead bugs and mold between the glass and mat and print. I have had to take everything apart, clean everything and put it all back together again. There is no carry over, I assume nothing. I’ve had to begin completely again, and again, and again. And again. What remain as usable belongings are enough, are more than enough, and out of them will come immense value in ways I can’t even begin to understand.
Last thing on housing. Let me be clear, I’m not too proud to be unhoused; I’m immune-compromised and I’ve been too injured and too ill for too long to be unhoused without putting my health in seriously increased jeopardy.
About my Go Fund Me: In case you’re wondering, the fundraiser target is enough money to secure my access to medical care, cover the costs insurance doesn’t cover, and to secure my housing and housing related expenses for 2 – 2-1/2 years which is the length of time we anticipate it will take for me to fully rebuild myself, assuming no more serious setbacks. If there’s any left over, it goes to homeless shelters. It’s our hope that the Go Fund Me will establish autonomy for me until I’m well enough to re-establish it for myself. Like we used to do in my Seattle studio, I’m hoping that some of you consider hosting fundraising classes so that the joy, and burden, of helping someone financially can be shared even more widely.
Of course, there are prizes. Any donor of $1000 or more will be entered into a raffle where winners can choose anything they want from my educational archive, it’s full of hundreds of hours of educational and “turnkey” programming content that will spice up any teacher’s repertoire. There’s also a raffle for donors of $5000 or more, the prize is collaboration for a limited series, featuring the donor, on my streaming channel that I cannot wait to be well enough to launch. I know that’s nothing more than vaporware right now but please trust me when I promise you that my instability has proven to be rocket fuel for my creativity, ambition and passion. Let’s. Fucking. Go.
I’ll write again soon to share the words from some of my colleagues who I asked to support me by explaining directly to potential donors what I’ve done for them, my colleague, in the past. But something unexpected and quite lovely happened as a result of their written testimony. As a giver, it’s been my greatest humility to learn to receive – the fixer needs fixed – and while their words were intended to influence you, their words helped me get to the point where I could accept help without practicing self-recrimination for needing and receiving it. They helped me accept that I simply got hurt, then I simply got sick, then I simply couldn’t work. They helped me recognize the pure blessing of having the help of Neil & Jojo, John & Andry, and of anyone who is able to contribute, in any way, to securing my care and stability. When I recover from the effort of writing this, I’ll share with you what they had to say as a way to help remind you of how powerfully our acknowledgements of each other can help transform situational angst into emotionally -neutral acquiescence. For certain, what we say to and about each other has all kinds of crazy, stealth, positive power.
So that’s what’s been going on with me. I’d love to know what’s been going on with you and, if there is anything that I can do to help you, I absolutely will.
Here’s how to reach me if you want to reconnect; 1-206-963-0755, [email protected], and my mailing address is Post Office Box 866, Rainier, OR 97048.
Lord God, Jesus Christ, Holy Spirit, all our angels, guides and all other benevolent deities whoever and wherever you are, help us all, help us now and help us help others. Prayers, blessings, virtual hugs and kisses all desperately wanted, appreciated and returned a thousand times over.
I love you.