September 4, 2023
There are two paths to becoming an extremely high maintenance person. The first is becoming a celebrity, the second is by contracting a spinal cord injury. The latter is much easier. Both take real determination and commitment. I don’t recommend the latter, and can’t speak to the former. :-)
A little gallows humor for the gallery. ;-)
It’s been a moment since I have written a formal fundraising campaign update. It’s a challenge often to come to such a page. The marathon of generating financial resources to cover care costs is heavy enough for one alone (or a family), it’s another thing entirely to feel as though one is shouldering a constant ask of others as well. Donor fatigue is real. So too is campaign fatigue.
One way that this shows up is through the implicit inquiry, “am I worth it.” — Of course these questions of validation are not unique in this case, however, the effort required to move through our personal challenges though they are merely mental, chemical, or physical, increase in complexity as we progress. Indeed, though we might solve one, there may always be another to take its place.
I am by no means nihilistic in this sense, and always believe we can find ourselves fully realized as the blissful majesty of being. Never to waver again, we become the fountain of generosity with our every breath. Childish, distant, or always already, such is my aspiration.
Meanwhile, it’s easy to find myself thinking, “if only I could just walk down the corner and get a job at the local market, I could live that simply.” And yet the practical reality rears its head. This life demands much more expense than that could provide, and the walking is another matter entirely. Truly this world, as we have made it, does not easily say “yes, you are worth it.”
In campaigning, that is always this question. Of course you, or another, or another might reply wholeheartedly with YES, you most certainly are! And you have; donations have been coming in small and large for years. Truly, the great cosmic answer has indeed been YES! Almost 4 years ago to the day, things began to look very bleak and dangerous in terms of my viability, yet here I am, joyfully crafting these words in hopes that I might share some generosity with you.
Just so, though I may not tease apart faith and effort and reward, here I sit with another month of finance in the bank and no clear path beyond the ask to find the economic way forward beyond. I have no shortage of faith, nor joyful opportunities to connect and generate value in the world.
I have been engaging in dialogue, generative conversations with others around the globe, helping to open new ways of looking and seeing and acting with care in response to what arises. I’ve been writing and publishing regularly, building a corpus and driving towards some clear and holistic expression, some point of leverage in this time of global turbulence.
I have yet to establish some monetary reciprocity for products or services rendered, but I find myself diving deeper and deeper into a sense of liveliness with the earth and all her bounty at the center of my heart. There must be some way, yes?
There is a deeper work I do, keeping open my heart, tending the flame of joyfulness, celebration, and loving compassion and care for all being. This rests, such as it is, on the altar of my soul, itself resting atop the often fragile stool of personal health, care availability, and finance. Each of these legs requires an ongoing agility as they have a life of their own, rarely standing still, and in the best of moments dancing together, while in the lesser offering a challenge of balance that can trend to the comical or downright absurd.
Today I am returned. I spent the morning writing, and published with joy. My health, fragile last week, seems to be returning. The care schedule for the month ahead is nearly 80% robust. Finance, as I said, runs through the month, and maybe a week or two longer as the crow flies. The week ahead, and in fact the month, holds a plethora of engaging, creative, and potentially even generative conversation with exciting partners, near and far. With the help of dear friends, we have submitted for engagement with a wealthy foundation to explore the possibility of projects together with them.
Today I am returned. I write this with thanks, from the bottom of my heart, to all of those who have stood by, whether you or they offered prayers or tears or cash or any aid of any kind. Even those who do not know my name, but only simply live their lives the best they can, my gratitude to them as well, like you, is boundless like the depth of our hearts when we really look.
Today I am returned. I write this because I am not a celebrity with the commensurate residual incomes and high dollar commands. No, my high maintenance comes only from that fateful day in November nearly 21 years ago (does my spinal cord injury get to go drinking in November? ;-) My high maintenance drives me to this page to ask once again for your help.
Please do offer a donation if you can. Share this update and my story with others, if you will. Put me in touch with someone you know (or you yourself if you are so endowed) who might have the financial wherewithal to find inspiration in my vision, intent, and work, someone who might love to underwrite those efforts for a term of months or years or longer if you might be so graced.
Thank you for sharing this moment.
Yours always,
Kabir
January 21, 2023
At the dawn of this Gregorian 2023, threshold of the year of the Rabbitt, the struggle on the ground for me to source a month-to-month economic viability remains very real.
In the meantime, I find inspiration abounding. My new website at kabirkadre.art continues to provide a portal for outreach to the world, a place to channel those expressions that have meaning to me.
I recently had the good fortune to be interviewed on the HICKORY podcast, where I was able to tell an enjoyable version of my history and arrival to today. Please enjoy that conversation at the video attached below.
Meanwhile I'm working today to polish another interview that tells the deeper story of longing for what I might offer the world with the right community coherence, I look forward to sharing that soon…
October 2, 2022
Kabir's Purpose: Tending today's soil for tomorrow… Support humanity and the biosphere through this significant time of transition through conscientious, creative, and insightful initiatives targeted to unleash insight, wisdom, resilience, connection, and the creative potency within humanity.
Establish the livelihood and secure the vitality of a sincere, creative, and generous individual working with others to bring about positive change in the world.
Connect emotionally to: a deeply sincere, loving, creative, engaging human being who has a lot to give in ways that matter, both interpersonally, and systemically. This person needs a financial runway to avoid destitution and to build the systems of long term sustainability of their offering.
"It's hard to look out at the sky when the floor is moving." Financial concerns limit necessary care which increases stress and adds to first order health challenges, all of which produce an unstable condition that hinders the capacity to fulfill on otherwise meaningful contributions.
Securing this floor going forward requires a steady income of $20,000 per month. Thanks to the goodwill of inspired collaborators, devoted friends, and others, we are making real progress towards systemic functions to generate this income, but in the near term we need direct and personal support to weather this building phase. With the help of a wide and generous audience, something beautiful can be born.
How can I give in a way that's simple?: Make a one time, or scheduled monthly tax deductible contribution by clicking here (HHL)
Notes: Kabir is nothing if not audacious. Collaborators have made statements such as, "He helps our group keep our feet planted firmly in the clouds." His vision is timeless and inclusive, and while far-reaching, he offers prototypical community experimentation that humbly yet sincerely tracks and moves in the direction of that guide star.
July 26, 2022
July 25, 2022 — Kabir’s Ask Me Anything
Or as Geoff says, may be better "Ask Me Everything" :-)
The video is about 90 minutes long, but you can hop easily to the meat and potatoes with this guide to the timecode:
0:00:00 Introductions
0:12:58 Opening
0:20:08 Dialogue
1:20:35 Closing…
1:24:18 The End…
The conversation was deep and beautiful and has already begun stirring some additional creative actions in the aftermath…
I hope you will enjoy…
June 22, 2022
Learning of my recent acute conditions, my dear friend Molly offered the most endearing letter, asking if we would be all right for her to share with family and friends.
I was brought to tears, and speechless.
Molly has a beautiful writing style, wry wit, and insightful mind, you can learn more about her at her website: mollyjhalfman.com
Molly's letter…
“I have a profound admiration for Kabir. The journey of our relationship has evolved from my first perception of him as a soft, eccentric man with the title of my new boss, to a man I adore and hold a lot of space for in my heart. He has become a loved one. From meeting him in the first year of the pandemic, through the following six months that I was his caregiver, to nearly two years later when I strut into his home to announce my pregnancy, he has had an immense impact on my life.
The first time I fed Kabir, who is a quadriplegic, I spilled soup on his lap. Likely noting the awkward shift in my demeanor and regretful expression on my face, Kabir looked at me with a grin, shook his head, and said:
“I can’t tell you how much this doesn’t matter right now,” and continued joyfully with his inquisition into my life.
We have wept together over poetry and personal stories of love and loss. We have celebrated both life’s little and not-so-little victories, watched movies in his bed, giggled like schoolgirls, and meditated in somber silence. We have witnessed each other stumble; from emergency catheter flushes, to unexpected bowl program outcomes, to the frenzy of mucus-blocked airways. We have experienced each other at our most vulnerable; from poop stains to infected bed sores to Kabir gracefully calming me down amidst an otherwise neutral moment’s panic attack in his living room.
To bear witness to Kabir’s financial hardship as he struggles to keep his care ecosystem (his livelihood) afloat brings me such angst and sorrow. An example of the failed healthcare system we live in where someone like Kabir cannot receive quality, affordable care. But Kabir’s smile and relentlessly positive energy will keep on keepin’ on because that’s who he is, and I imagine that given what he’s overcome, there is nothing life can throw at him that he cannot conquer with grace.
Please contribute to Kabir’s care cause so he can focus less energy on his survival and continue positively uplifting his community.
helphopelive.org
[She included photos (see photo album on the campaign page!)]
1. The day I broke my pregnancy news to Kabir and our friend Vanessa:
2. My favorite photo:
3. When Kabs got me a box of menstrual tea to keep at his house for when I was working, and another to take home, because I was a hot mess."
----------------------------------
You are welcome, and of course encouraged to follow her suite if you are so moved, we've used her letter as a foundation to support others to share with their networks, feel free to cut-and-paste from below!
[[[[[[[[[[[[[[[[[[[[[[[[[[[[
“My friend Kabir is a quadriplegic and needs our support. I’m sharing this because [what Kabir means to me. Fill in the blank :-) (include a photo of us if you have one! :-)]
helphopelive.org
Here is a telling piece written by one of his former caregivers, Molly:
“I have a profound admiration for Kabir. The journey of our relationship has evolved from my first perception of him as a soft, eccentric man with the title of my new boss, to a man I adore and hold a lot of space for in my heart. He has become a loved one. From meeting him in the first year of the pandemic, through the following six months that I was his caregiver, to nearly two years later when I strut into his home to announce my pregnancy, he has had an immense impact on my life.
The first time I fed Kabir, who is a quadriplegic, I spilled soup on his lap. Likely noting the awkward shift in my demeanor and regretful expression on my face, Kabir looked at me with a grin, shook his head, and said:
“I can’t tell you how much this doesn’t matter right now,” and continued joyfully with his inquisition into my life.
We have wept together over poetry and personal stories of love and loss. We have celebrated both life’s little and not-so-little victories, watched movies in his bed, giggled like schoolgirls, and meditated in somber silence. We have witnessed each other stumble; from emergency catheter flushes, to unexpected bowl program outcomes, to the frenzy of mucus-blocked airways. We have experienced each other at our most vulnerable; from poop stains to infected bed sores to Kabir gracefully calming me down amidst an otherwise neutral moment’s panic attack in his living room.
To bear witness to Kabir’s financial hardship as he struggles to keep his care ecosystem (his livelihood) afloat brings me such angst and sorrow. An example of the failed healthcare system we live in where someone like Kabir cannot receive quality, affordable care. But Kabir’s smile and relentlessly positive energy will keep on keepin’ on because that’s who he is, and I imagine that given what he’s overcome, there is nothing life can throw at him that he cannot conquer with grace.
Please contribute to Kabir’s care cause so he can focus less energy on his survival and continue positively uplifting his community.
helphopelive.org
The day I broke my pregnancy news to Kabir and our friend Vanessa:
My favorite photo:
When Kabs got me a box of menstrual tea to keep at his house for when I was working, and another to take home, because I was a hot mess.
You can read him in his own words in the latest campaign update at the link above, AND follow his writing, both global in scope and deeply personal at his newsletter, here: wisdominquiry.substack.com
You can also follow the exquisite writing journey of Molly at her blog, here: mollyjhalfman.com mollyjhalfman.ck.page
]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]
June 9, 2022
About navigating through the pandemic and my more recent circumstances and why we are reviving this funding outreach…
Six months now past the first of the year, and one year into the duration of our stay here in the home of our landlord, Frank, the pandemic whispers on…
What a journey it is. A year and a few days ago I came out of the five day zoom video meditation retreat which would mark the first week in the new home. Since then, my meditation instructor, good friend, and profound guide has passed away not long ago, and much more has transpired domestically.
At the writing of my January update this year, funds were, for the moment, flush, but care was nonetheless somewhat precarious. Today the reverse is true, but with somewhat heightened dramatic undertones.
Where a shortage in care can often be managed by staying in bed and calling on friends for meals and minor support, the shortage of monetary means can lead to much more substantial changes.
Here I can hear Charles whispering in my ear, “the writing must be real, it must be plain, it must be true and naked, do not dance around the facts, but put them boldly to be seen.”
In the absence of money, continuity of care is broken. With the break of that care, one becomes essentially a ward of the state. While I have not toured this condition extensively, my one brush with it proved terrifying enough.
The following is excerpted directly from a journal from November 6, 2020 (see previous update for further detail), typos and formatting have been left intact for posterity. The piece was written from a dark room, I was ill, infected, and awaiting departure to return to the hospital…
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2:30 PM. Ambulance transport is due In one hour.
The skilled nursing and recovery center I arrive to yesterday evening on promises of the bowel care that functions for me, has reversed their position on the matter.
This leaves me a day down in my health, and back to square one with the hospital discharge efforts of the previous week.
This brief text to Dr. Mike this morning summarizes the journey here so far:
“ Definitely still figuring out the situation here:
Loud TV [of nightmarish content] all night, no antibiotics, no functional call button, no bed controls, no breakfast yet. Still awaiting doctors orders for bowel program.”
They didn’t get much better from there. Continued broken promises from the admissions officer, culminating in the final disappointment bringing us to this moment.
Meanwhile aunt Mary and Elisa have been generously organizing to help prepare the house for sale and Ahlea has begun the efforts of locating subsequent living.
My capacity to function from within this place has been dramatically limited.Poor cell service in combination with an inability to choose when and for how long I have access to my phone has made work in possible and communication strained at best.
If I can survive this treacherous waters, the post Mortem dBrief should be rather profound.
Sent from my iPhone
-----------------------------------------------------
This is as plain as it gets. I have spent the past few months (through yet another substantial hospitalization, this time for pneumonia) contemplating the reality described above. Contemplating, dreading, until I realized that whatever the outcome I would have to live through it with an open heart.
Rather than continuing to dwell on that more obvious path, I begin to fill my mind with more positive thoughts of possibility and creativity.
Indeed, this time of global upheaval and transformation has made the perfect storm for anyone willing to practice returning again and again to an open heart. Though by now, any of us in that practice can be forgiven for wondering just exactly how tempered these hearts are meant to become. ;-)
My writing has begun to expand, I now have a book in the early stages of editing. My focus continues to hone in on the question of “how best may I be of service to the greatest number.” I have begun to structure a podcast, and have found myself in exploratory conversations with new contacts around the world about projects that I’ve longed to inhabit for decades.
I am struck by the juxtaposition of the sense of fertile soil, so many hard but rewarding lessons learned (about finance, economics, partnership, community, transparency, agency, and vulnerability…) over the years of this pandemic. I feel prepared for something, and at the same time I, myself without the means, alone, to take the next step.
To that end I have begun to reach out to my community. In parallel to and with this campaign, I am seeking a cohort of patronage for the period of one year, holding a faith in myself and the divine possibilities of the cosmos that something more lasting can be built from so much hard work over recent years, and that bridging that window of time can take my brain out of survival mode and more fully into generosity.
The idea is to generate a community of folks who could each offer support, perhaps even monthly for the period of one year.
The monthly average cost for my care and stability is closer to $18,500, and the funding goal would be set to $20,000 (about an 8% cushion).
One of the first replies introduced me to a former immigration attorney who has already got me further along the process of the public support maze of bureaucracy than we have ever managed to get before… New angels abound. :-)
I will certainly have to send another update in a month or so as that is the threshold point by which the path forward will be quite clearly decided.
In the meantime, thank you for reading this far, and if you are interested in a personal discussion of the above patronage program, by all means please do reach out!
Otherwise, perhaps you will consider something more modest, but perhaps nonetheless ongoing. :-)
To make your donation recurring, just check the box for "Monthly Donation!" Also drop by my publication on Substack to follow along with Life as Art (wisdominquiry.substack.com)
In love,
Kabir
June 8, 2022
January 2, 2022 — New Year's letter to past supporters…
Friends!
I’ve been meaning to write. Or perhaps, put more truthfully, I’ve been waiting for meaning, to write.
“Happy New Year!”, I’ve titled this note. As I wrote that, I noticed a sense of vastness regarding the moment I initially tendered the campaign and request for support through the Help Hope Live platform.
At the time, New Year’s Day, 2022 seemed an infinity away. The felt sense of likelihood that I would actually travel successfully that breadth of time existed almost not at all.
It was a dark and stormy day… No kidding, seriously, a dark and stormy day. Thanksgiving, 2019. Finances had begun to run low, and I had a number of visible care partner departures on the horizon over the next few months.
Optimistically, I had imagined I would use the remainder of the year to strategize and develop an action oriented approach to my situation, leveraging time and resources available to develop a creative solution to what seemed narrow straits ahead.
Thanksgiving day, storm hit, I was expecting guests, but the weather got the better of me and I spent the day physically wiped out in bed; meanwhile the guests had really no reason to travel as the roads were quite in-traversable, in the midst of receiving nearly a month’s worth of rain in a day.
I was out of bed the next day, but not yet, it seemed, out of the frying pan. For the coming weeks I would struggle to catch my breath, and simply eating or drinking anything was enough to drain the blood from my head, requiring fast action to prevent passing clear out.
On a routine visit to the doctor on 10 December, we discovered a collapsed lung and I went directly from lunch to the ER to be admitted and to spend the next 11 days in the hospital.
I was released into the dark eve of Christmas busyness on the evening before the solstice, disoriented from having been so far removed, now with the holidays between me and the new year, profoundly uncertain of any ground at all…
And yet here we are. As I proffered the initial invitation in mid March 2020, a global pandemic was just underway. Things had been looking fairly bleak for me in terms of necessary finance and care systems support, and it seemed the world as well was following suit.
The response to my campaign was overwhelming (Thank You very much ;-), and combined with pandemic related emergency relief, somehow I managed to stay afloat.
The meaning I have been waiting to write, was the longing to report a resounding success and recovery from the precipice. I have thought often that I might be “just about there,” and able to report how your generous contributions stopped and enabled a reversal of the tides in my life.
As you may surmise, this has not come to pass, not entirely.
What I did connect to was the recognition that regardless of condition, I did want to reach out, reiterate my thanks for your contributions of care and commitment, and announce that while I may not have “made it,” I am, in great thanks to you, in a much better place.
A sequence of events…
The campaign, to which you so graciously responded, stopped the immediate outflow of well-being and allowed me to move from “house on fire crisis” mode into a more appreciative and agile stance to proceed cautiously forward.
Government payroll protection support stepped in, allowing additional funds to retain the necessary care partners to keep me operational, and some investments that had gone nearly to nothing began to return in spades.
The past 21 months, I would not describe as “easy,” but they have been, at times, gentle.
I did have to sell the house at Mill Peak, and was fortunate to find a truly beautiful family to carry on the legacy of love and care at that address. In a serendipitous wink from the cosmos, the four-year-old son who would be moving into my daughter’s former bedroom, also shared her birthday.
Haneen and Mudhar, and their child became fast friends in the process of transferring ownership; goodwill gifts were exchanged along the way, and the continuity of a growing well-being was provisioned for the property.
The pandemic has driven folks away from the caregiving profession in droves, and just finding people to step into those roles has become nearly impossible over this same stretch of time; additionally, just the act of finding new affordable (and accessible) housing became the next major strain.
In late October 2020, a sudden combination of ill health and care shortage landed me in the hospital again for almost 3 weeks.
The illness was quickly managed, but as I had suddenly lost care, and new partners were not robustly incoming, I found myself temporarily a ward of the institutions. That journey saw the darkest day of my life to date.
At the hospital, we had been challenged by the need to discharge me to a residential care facility, and yet unable to find one capable of managing the physical bowel care I needed. Finally, after many calls in which we were told that no such care would be possible, one facility confirmed they could handle the task.
A medical transport arrived in the early evening and with a couple of friends along in support, I made the journey to a very dark home indeed. The experience was surreal. I journaled about the process in the midst of it, but suffice to say my stay lasted less than a day, and was resolvable ONLY because I have such incredible help from my regular care physician and friend, who was able to issue the necessary orders for extraction.
Eventually, I did find care and make it out of the hospital, but that adventure made plain to me they need to sell the house, and I began searching for alternate living arrangements. That took six months!
Of course the housing market was madness, and the experience – with multiple parties searching for places on my behalf – still holds a residual housing discrimination case pending with the Department of Fair Housing and Employment.
And yet…
My dear friend Elisa stepped in through the journey to become the trustee of my newly established Special Needs Trust, and with her additional support, we found and settled on a better than imagined solution, in a small 1912 craftsman home in one of my favorite neighborhoods in San Diego.
As moving day approached, the neighbor at Mill Peak with whom I had only recently struck up a friendship, insisted, “Kabir, I want to handle the move for you.” This turned out to be no small offer whatsoever…
Ron’s company handles disaster remediation for all scales of enterprise, from single-family home, up through industrial institutional, and government properties; I.e. Their moving department is All-Pro!
On moving day, a team of 15 people showed up to the house, packed everything completely, and moved me across town to be nearly settled by the end of the day. Ron’s family stepped in as well to handle some technical details around electronics and wiring to improve the accessibility, and absolutely not least of all, his business partner, whom I have met only once before, arrived to the new house by 8 AM on moving day so that when I arrived at 11, there was a newly constructed ramp to allow me unfettered access past the stairs!
In the face of a couple of really objectively hard years (for so many), I have managed to keep my chin up, my heart open, and eyes wide and hopeful. I could never have done this without your support.
Meanwhile, thanks to some guidance from a dear friend (a few of them really), and the good work, of Dr. Daniel P Brown, my meditation practice has matured and grounded unlike ever before in the quarter-century of practice that led up to this time. This dimension of things has moved to take the place of central importance in my life.
The proceeds from the home sale allowed some additional investment returns, and have given me enough ground to continue the slow grind towards establishing an ongoing economic stability. A small (and growing) community has formed around the campaign, offering monthly support and while this resource doesn’t yet make a substantial dent in the financial aspects of things, it absolutely grounds me in the sense of interdependence and marks a line in the sand (it takes a village) that I am overjoyed for the opportunity to honor.
As I mentioned, I had hoped to write this letter to report that everything is settled and we can expect smooth sailing from here on out. Aren’t so many of us hoping for just such a sentiment these days?
That is not the case for me, as it is not the case for the world, and yet we still have reason to hope.
I am currently living on the capital portion of remaining investments which, with a little good fortune, may grow in spite of the expense of care. I learned, just yesterday that an investment placed in 2016 that appeared all but dead, seems now to have me well-positioned on the ground floor in what will be potentially THE MODEL of a “Green Data Center,” going forward. Fingers crossed!
Care is still my strongest concern, having finished the year with just two care partners in what really should be a team of five. With luck we will have our third back within a few days, but hiring has remained Challenging at best.
Nonetheless, given a continued ability (through adequate care) to get out of bed and into the office, I have plenty of good work on my desk that will allow me, at a minimum, to continue to give back, and should all go as well as it could, may even mean the generation of enough economic activity to develop a real and practical sustainability.
One day at a time…
I had hoped to write to say that you have made the difference (and you have), and more to report a resounding success (and truly, meaningfully, there is that), but it will have to be enough just to write to say, I love you, and thank you, and here in the trenches, at the front, the horizon aglow, birds are singing, and hearts are full with what may be possible for us all in the new day ahead.
With warmest regards,
Kabir
July 6, 2020
Thank you to Katie and Tomás and Elisa (with questions additional from Tyler and Beejel) for coming to support the Q&A (AMA) dialogue on the acute need and opening to possibility!
June 10, 2020
Beautiful friends :-),
I have not used this aspect of the platform before today, in the way that it was intended – to communicate with the community of supporters. Instead I have used the "Updates" function as a way to organize introductions to the material relevant to the campaign.
This audio recording of a conversation, however, is so relevant to the deeper meaning and purpose I hold for our MettaCare initiative which is really what your efforts here go to support, and I wanted to share with you all.
Thank you once again for coming to be a part of this community and for your love and generosity.
These are trying times and I wish you the very best.
March 16, 2020
Employer Matching!
Many employers will help to strengthen your gift with a matching program, often contributing dollar for dollar what you offer!
Please follow this simple 20 second video, or these steps to take advantage of this great supercharge:
1. Click Give.
2.Select "Learn about Other Ways to Give."
3. Select Employer Matching and type in the name of your company to see if they participate!
That's it! And thank you once again for your support!
March 16, 2020
The hard realities of care…
From the moment I wake, the very possibility of rising for the day requires the hands and feet of someone else. The simplest tasks, from brushing my teeth to eating lunch all require more physical capacity than I alone can muster. Ordinarily, as we go through our day, simply walking up the stairs to the bank, our movement pumps fluid and blood through our body – for this I require a fitness trainer, time with skilled hands, and disciplined time out of my day.
For many, spinal cord injury and particularly quadriplegia can be an incredibly taxing and isolating event. At the very least, managing life with this level of disability is like running a small business and as you may have heard, most small businesses fail in the first few years.
The dynamics are intense, you must manage budget, supplies, staffing and schedules, "employee" relationships, team dynamics, and vendor relations. This to say nothing of managing your own body and its countless new and resource consuming needs, ostensibly, the product of the business.
Of course many of these are simply household duties, but in the case of injury, these lie on top of those simple home maintenance concerns.
The monthly cost just for medical and health related expenses is over $15,000 and breaks down roughly this way…
Daily Function:
~$11,500 monthly for caregivers. This is a team of five supporting one another to cover 15 hours a day of care for my body, for my home, for transportation, and perhaps most importantly for one another.
— $60 a month for payroll service.
—$200 a month amortized for durable medical equipment (wheelchair and showering)
— $450 a month for household utilities due to the loss of internal temperature regulation in the body, and the necessary electric bed to properly care for my skin and ability to sit up and access water and communications in the night.
— $150 a month for medical supplies necessary for urination, bowel maintenance, skin care and protection and team hygiene (glove, etc.)
Maintaining Basic Health:
— $200 a month for high-quality nutrient and herbal supplements. These help to combat osteoporosis, a constantly infected bladder, and a compromised immune system while complementing a clear and positive mind and energized body in the face of the diminished exercise one ordinarily receives just by walking around.
— $700 a month roughly amortized over the year for doctors appointments, related tests, and hospitalizations (knocking on wood ;-).
— $50 a month goes to pharmacy expenses – this is largely just the prescription medication coverage on my insurance, with the occasional antibiotic need.
$150 a month for health insurance premiums (thanks to Medicare!)
Strengthening Vitality and Engagement:
— $950 a month covers my dear friend Andrew (allabilitiespt.com) to show up once a week for two hours, throw me on the incline sliding bench and help me generate some blood flow, weight-bearing, and basic exercise to keep up my bones, strength, and vitality.
— $450 a month for Feldenkrais therapy (www.donnaray.com) – an exceptionally effective nervous system support, and one that I hold accountable for the most notable return of trunk sensation and abdominal control, over any other therapy or treatment since my injury.
— $50 a month amortized for hardware and software accessibility aids like the voice software and microphone I am using to compose this message to you now!
— Not listed but more sporadic are additional costs when traveling to bring caregivers and equipment.
This is a list of some of the basic cost concerns that have supported my well-being and freedom to do work over the last 17 years.
I hope this will give you a better sense of what you are contributing to and supporting in concrete terms. All of these resources are leveraged to give me the best energy, most time active, and most agility to practice my passion of finding the most effective ways to use my life in service and love for the world.
Please see the updates “MettaCare” and "2020 Vision board" to learn more about how I strive to bring that service about. This small business has been running for nearly 2 decades on cash reserves, with luck I've just about figured out how to make it sustainable… Thank you so much for your help to cross this threshold.
March 16, 2020
MettaCare initiative!
The following text is from the opening salvo of an ongoing dialogue between myself, my care partners, and a handful of other interested collaborators from various places of insight in the healthcare industry.
This dialogue has evolved and we are at the early stages of a substantial business plan/grant to move the initiative forward through four phases over five years. The proposal is intended to draw funding to apply the caregiving intelligence that we have developed in my care over the last 17 years to other homecare situations, and in fact into the healthcare system itself at large.
This plan/grant proposal covers the territory of training home care workers, both professionals and family members, developing a software platform to support care systems, and seeding and contributing to an industry dialogue on care through a symposium series intended to nurture a regional "Care Cooperative" to coordinate the intelligence and wisdom of diverse institutional actors as well as individuals on the ground.
If this campaign can reach its $60,000 goal, it will give me the freedom and flexibility to focus full-time in a leadership capacity with disengaged community towards moving this project forward into production.
So without further ado…
Love,
As you may be aware, home care remains an incredibly challenging area within our health system.
Individuals working in the role of caregiver often experience a variety of negative impacts ranging from high stress, to low wages, burnout, and even negative health outcomes of their own. Meanwhile, the "beneficiaries" of care are often challenged for continuity of care, stress beyond their additional condition related to the caregiving relationship, and additional health breakdown as a matter of course.
By way of example, whenever I am visited by healthcare professionals, home nurses, doctors, and the like, they almost universally express surprise at things we have learned to take for granted. Simple things, like the health of my skin, or the level of engagement they find with my caregivers, often seem like foreign elements in their eyes.
There are numerous studies showing that caregivers suffer from isolation and are more likely to find that "care responsibilities keep them from doing other activities that they enjoy."
Systemically, these care environments often suffer from failures in (poor) communication, poor teamwork, and poor or total lack of coordination. These factors negatively impact not only the receivers of care, but quite unsurprisingly, the givers of care as well.
While the research shows a broad spectrum of negative impacts on caregivers including emotional, physical, and even financial difficulties as very concrete outcomes, we can also see that systemically individuals throughout the relationship can easily find themselves feeling the victim of these dysfunctions.
That victimhood is an insidious and important aspect of the problem, as it goes to identity. Caregivers are often seen, and even treated as "tools" of the healing support experience, and not themselves as human beings, as an integral "member" and even caretaker of the process.
Let me also not fail to mention the obvious elephant in the room – that being our exploding need for in-home care here in the US (and worldwide) as baby boomers make their way into their later years. There is simply not the physical healthcare infrastructure to handle all of these individuals within institutions. As one professional in the field recently put it, there is simply is no way to build the physical infrastructure fast enough. Care will be administered in the home.
There is clearly expanding need, and an epidemic shortage of not only skilled caregivers in a professional sense, but a shortage of skill for the countless nonprofessionals who will be thrust into that role in this and coming decades.
As I mentioned above, in an anecdotal sense, it is quite clear that my own health has benefited from the way we approach our little care system here. In fact there have been numerous and quite practical examples of my health and well-being improving in this context.
We really started an intensive focus on discerning the nature of our care process AND doing so with an intentionally reflective element that allowed us to adapt and adjust, improving in real time. Since that time, a number of very specific elements have seen dramatic improvement:
— Hospital visits dropped off significantly.
— Skin breakdown that had become a persistent concern, nearly vanished.
— Urinary tract infections which were a regular issue, became sparse at their worst and were generally eliminated fairly quickly.
However, it is important to further note that not only my own health and well-being improved in this refined context, but also that of the partners in care who, with me as a nucleus, enacted a greater field of well-being around me. In essence, they and we were in fact creating a culture, or field of care, that was caring for and nurturing them as much as me.
With a nod to the Eastern mindfulness term, Metta, meaning "loving kindness," and playing on the traditional system of Medicare, we called our new experiment MettaCare, and it really is better care.
Together we had successfully created a nurturing and supportive environment for individual wellness and growth, collective learning, and an integrative awareness expansion for all. One of our care partners in this process, David, coined the term "Omni-Directional Care Awareness" or ODCA.
This environment is characterized by robust interpersonal communication, a sincere friendliness throughout, coherence of effort, and a sensitivity and care for outcomes, not just at the level of the "patient" or "beneficiary" in the traditional sense, but for everyone. Within this, we find a better fluency and adaptability of ideas, and an almost seamless coherence of the care feel beneficial to all.
We have transformed the traditional roles and identities of patients needing care and caregivers providing care, into a more empowered engagement where everyone has the dignified role of participating in cultivating a care field that produces outcomes of health, well-being, and capacity throughout.
Recognizing not only our good fortune to have come upon and have developed this field of insight and wisdom, but also the immediate and global thirst for a better care more widely distributed, we are turning our focus to discover how we might share this value with others.
By formalizing this ongoing evolutionary dialogue and experiment in practice, we can help to meet our nations ballooning requirements for care. This is done, not only by increasing access to skills and process intelligence, training patients, families, and professionals, but also through helping to embed these principles of vulnerability, mutuality, and empowerment throughout our systems of healthcare.
There is much talk today, about "empowered patients" and that is an excellent start, however I would encourage us to go further to discover how can we create empowered families, and empowered communities of care. Therein lies the real transformation.
March 16, 2020
2020 Vision Board
Late last year my dear friend and doctor asked me to put down a vision board of my "Dream Job."
Mike is an incredible fellow and has managed to surround himself with an incredibly diverse group of scientists, entrepreneurs, cutting edge and leading medical practitioners, investors, educators, biodynamic farmers, spiritual practitioners, and others, many of the top of their field, and all breathtakingly remarkable in their own right.
His interest when asking the question had to do with his own struggle to try and figure out what to do with his unique vantage point and position of privilege in the middle of all of these flourishing resources. In his view, all of these incredible threads must fit together in some profound tapestry, somehow…
In response to his invitation, I crafted the short video you see above. Let me briefly narrate here…
