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…