May 2, 2024

Somebody’s Work

As you might imagine, my notions of work and purpose changed radically when I retired prematurely due to ALS. I had spent my adult life describing my work as a vocation, because I derived a deep purpose from my role as a nurse and as a pediatrician. I experienced a true sense of being exactly suited for the work I was privileged to do. 

Approaching retirement age, I naturally began to imagine how I would make the transition from a busy professional life into a more leisurely life completely of my design. I had planned to first create some space to allow for new possibilities. I kept a short list in the back of my mind:

A new school in Chajul, Guatemala, built by Building Goodness Foundation and Limitless Horizons Ixil, which opened in 2022.

  • A school in rural Guatemala (pictured at left) needed help with understanding the foundations of child development.
  • I wondered about volunteering in the county jail or the state penitentiary. (A suggestion from my friend Jesus.)
  • I knew I’d always be welcome to read to the students at Greer Elementary.

The imaginary slate of opportunities for an extended, new purpose and vocation got wiped clean with the diagnosis of ALS.

But why, you ask. Surely the generous faculty at Greer would continue to welcome you. 

The stark reality of life with ALS, or any serious life-limiting condition, is this: The condition itself brings a boat load of mandatory, high-priority work.

Making the pivot from the imaginary short list to the high-priority, ‘must-do’ list was more about accepting and then stepping into the new reality, rather than lamenting the old one.

Finding new purpose dovetailed neatly with the paramount need for increased research funding to develop new treatments for ALS.  

There is hope in action.

Let’s be crystal clear, the work that comes with ALS is far more than lobbying on Capitol Hill.

Every moment of every day I am somebody’s work. Call it responsibility, call it being on-duty, call it taking a shift, call it a labor of love. Call it what you will, I am someone’s work.

Take this morning as an example. After preparing and giving my meds and my first g-tube feeding, followed by a stretching session, then toileting, showering, shaving, contacts, and multiple transfers of my body, I slyly ask Peggy if she is ready for her coffee break. She chuckles and responds, “Right. I was ready for that an hour ago.”

Jim, Peter, and Peggy watching the solar eclipse on April 8.

Peggy is the managing partner of my care team. The kids eagerly pitch in when they can, and we have two young men, Peter and Deon, who were sent from heaven. They work 6 to 8 hours a day, Monday through Friday. The rest of the time falls to the managing partner.

We are among the 5% of non-military families who have paid home care. Much like the families who have children with severe cerebral palsy, brain injury, or spinal muscular atrophy, the families living with ALS shoulder the care 24/7. We can add to the list: families with aging parents who have dementia or advanced Parkinson’s. Regular health insurance does not cover any of it which is a gross inequity of our current system of health care. This inequity seems likely to touch most of us at some point, making it all the more glaring.

The cost of home care varies from $25/hr for private duty to $35-$50/hr for an agency. There are pros and cons for each type but they are both expensive, especially considering other out of pocket expenses that are a given with most insurance plans these days. 

There is hope in action.

The Credit for Caring Act of 2024 is bi-partisan, bicameral (S 3702; HR 7165) legislation that would bring some financial relief to family care providers. Originally introduced in 2021-2022 by Senator Tim Kaine (D-VA), the bill has been reintroduced and would provide $5000 in tax credits to eligible families.

https://www.congress.gov/bill/118th-congress/senate-bill/3702

Now, if only we had a congress at work!

5 Comments

  1. Alyson Ball

    Many thanks for the shout-out about the Colegio Horizontes school in Guatemala. We are going gang busters now with 75 middle school students – and the construction of the highschool is in progress. We continue to be grateful for all the generous support you and Peggy are providing.

  2. Ashely Schneider

    Hope in action – what a great mantra to live by!

  3. Erin Treinen

    Hi Jim, thank you so much for mentioning Limitless Horizons Ixil in your blog post. We are incredibly grateful to have you as such a generous supporter and advocate of our work to provide high-quality education, academic support, and holistic wrap-around programming to 72 middle schoolers in Chajul, Guatemala. Sending all our best to you and Peggy!

  4. Katie Morrow

    Hi Jim, Very touched to see your article about your life, ALS, retirement and including Limitless Horizons Ixil. We would have loved to have hosed you in Chajul, Guatemala in our school and library. As the founder and Director of Limitless Horizons Ixil for 20 years, your support, dedication and enthusiam for supporting our school and mission, mean so much! Also, thank you for your advocacy and education for the Credit for Caring act, and inequity in access to care, an issue that matters to so many of us! Wishing you both all my best! With much Gratitude, Katie Morrow

  5. Mark Kary

    Hello Jim, my name is Mark Kary. I’m living with ALs in Roanoke, Virginia and I was able to get handicap parking changed from the commonwealth standard of eight hours for a handicap spot in four hours for assigned spot to 10 hours for a handicap signed or parking meter with no payment. I’d like to get this throughout the Commonwealth. So if you need another adaptive collaboration, let me know. Love what you’re doing.

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