Sour Stomach

A few weeks ago I was asked by the national ALS Association to take part in a day of lobbying congress to increase funding for ALS research.  I was honored to be asked and believed I would have something to contribute.  

Over the years I have participated in the annual lobbying event called White Coats On Call in Richmond, Virginia.  It is a day to meet with our representatives. The day is sponsored by the local medical society and the American Academy of Pediatrics.  We blanket the state capital in our white coats asking legislators to support policies that protect and promote child health in Virginia's Commonwealth. We encourage medical students and residents to join us to learn about how to use their role as a physician to advocate for change in their communities.  Having the learners along has always been one of the best parts of the day.

So, when I was asked by the ALS Association to take part in the Fly-In for ALS, I assumed I knew the drill.  Our job during the Fly-In would be to remind the Members about the Act4ALS legislation, to thank them for their vote, and then to make the ask for the bill's administration and appropriation.  Appropriating funds for the legislation would mean millions of dollars in new funding for research that was desperately needed to better understand the etiology of ALS, and to keep a pipeline of new treatments coming forward for randomized clinical trials.  I could do this.  This was in my current skill set.

The surprise surfaced during the planning for the daylong event.

I would be paired with Matt Salomon who is the very dedicated, and experienced Associate Director of Advocacy for the ALS Association.   After eight hours of legislative review and technical training for the virtual meetings, Matt and I met to review our plan.  We would have a day of scheduled meetings with legislative staffers from the Virginia delegation.  We would meet with each Senate office, and then move on to House members from our local districts, targeting people on the appropriations committee, if possible.

Matt had invited me to participate as an ALS Advocate.  I came to understand that being the ALS Advocate means being "the guy with ALS".

My job would be to put the face on ALS.  We would need to make ALS real, and that would be my role.  I would have 5 minutes after "the ask" to make ALS real.

This would be my first public experience of being "the guy with ALS". This would also be my first experience of "the flip".  I would move from being the expert doctor to the novice ALS patient.   

I quickly realized that this particular day of lobbying would present a new challenge. How would I bring together two aspects of my identity: experienced physician-advocate, and novice ALS patient.

I thought a lot about my 5 minute pitch, representing ALS patients everywhere.  What would make ALS real to a busy staffer?  What would be memorable?  What would create a zeal for ALS activism, above all else on her crammed agenda?  What would make her want to leave our meeting and abruptly barge into the Senator’s  office with earnest determination to make ALS research their top priority? 

I decided on the mechanics of toothbrushing.

ALS emerged first in my left hand.  I'm a proud left-hander from way back.  My mom and my grandpap were leftys too.  I love my left hand, even though it is failing me now.  The progressive neuro-degeneration of ALS attacked me first in my favored left hand.  This disease sucks, let's just say it.

Consequently, I have had to learn to brush my teeth with my right hand.  

If you have never tried to brush your teeth with your non-dominant hand, go ahead and give it a try.  Do it just for laughs, because it's ridiculous.    I guarantee that you will hold the toothbrush steady against your front teeth and wag your head from side to side.  It's actually hysterical.  Try it.

Anyway, I thought I would lead with this funny story about trying to brush my teeth, and suggest they try it too, just for fun.  Then I would follow with my zinger about how to create hope for patients and their families with ALS.   

I would ask:

"How do you create hope in the face of a progressive neuro-degenerative disease that is universally fatal in 2-5 years, for which there is no real treatment?" 

"Hope, I would say, comes with more research funding for treatment and discovery, just like the early days of HIV and Cystic Fibrosis. That's real hope, and it is within the power of the Member to achieve."

That should get their attention, right?  That and the funny toothbrush story.

On the morning of the Fly-In, I was all set.  I sat down in my study, in front of my laptop, like I had done dozens and dozens (maybe 100s) of times, for virtual meetings, many of which I led in my various leadership roles as a physician.

After brief introductions, Matt launched into our spiel, beginning, of course, with a level-setting paragraph that explains: "what is ALS".

As Matt began to describe the reality of ALS and its statistics, morbidity, and the paucity of treatment options, I felt my stomach begin to roil.   I have been calling this sensation my "sour stomach".  It's not exactly nausea, and not exactly pain.  It's not just a nervous stomach or reflux.  It's sour, and it roils, and this sensation started with ALS, and recurs when we are talking about the nitty gritty details of ALS.  It's my ALS sour stomach.

As I sat there listening to Matt repeat the level-set of ALS, my sour stomach started build.  It surprised me, because I hadn't experienced this sensation in weeks, but here it was again.

As Matt spoke, I had the surreal image of his words flowing out of my computer, into my body, to my stomach.  His words were BECOMING my sour stomach. 

 

Matt did a great job of summarizing the need for increased funding and for the appropriations to fund Act4ALS, and then he paused, and on queue, turned to me "virtually" and introduced "Jim, our Advocate for ALS" to say a few words about why the increased funding would be important to people with ALS.

I sat up and looked directly into the screen and thanked Senator Kaine's legislative health aide for the Senator's vote on Act4ALS.  I also mentioned that I proudly display a Kaine bumper sticker on my 2006 Prius.  She chuckled politely.

I proceeded as planned.

The toothbrush story fell flat, and my career as a stand-up comedian was in serious doubt.

I continued with my plea for hope.  This, unfortunately, drew a grimace.  Actually, it was more of a sad face. My presentation did not bode well for my wish to have her pronounce increased funding for ALS research as a top priority.

When I finished speaking, we abruptly moved on to the particulars of our "ask". This was followed by a round of polite thank you's for everyone taking the time for everyone else, and the  meeting ended. Blink. Zoom session over.

Matt and I repeated this schtick 4 more times over the course of the day.  The toothbrush story never worked.  More accurately  the story never made anyone chuckle.  The "where is the hope for an ALS patient" seemed uniformly overwhelming to staffers.  I was not feeling effective or useful as the ALS patient advocate.

Being a man of many talents, I decided to present myself differently during our last meeting of the day.  When it came to my 5 minutes, I would take  a palliative care approach, one that I have used many, many times to deliver bad news.  There would be no icebreaker jokes.  I would use a slower pace, and pause to allow the words to sink in.  I would offer permission to feel uncomfortable with the news being delivered.

Lo and Behold:  the palliative care approach worked much better.  The legislative aide connected with me, and she therefore received a glimpse into the world of living with ALS.

At the end of the day, I felt grateful to have had the opportunity to lobby for ALS research, and I will do it again, and again, and again (actually I already have).  I have plenty to learn about being an ALS advocate.

At the end of the day, I also had a sour stomach, which reminded me that ALS advocacy comes with a personal cost.   There are probably things I can do to have greater agency as an advocate.  I can certainly improve my communication skills.  And I may never know what the audience takes away or thinks about after they have time to digest what I have said.. 

The sour stomach?  

I’m thinking it’s pretty much going to be a part of the new drill.

Giving up Death for Lent

This year I decided to give up death for Lent. 40 days and 40 nights to put aside any thought about death. It would be like a Death fast. If you can give up chocolate for Lent, why not death. Jesus spent 40 days and 40 nights alone in the desert, fasting and facing down the Devil. By custom, the 40 days of Lent are used for inward reflection to renew and deepen faith. Colloquially Lent means forgoing a vice, perhaps to commemorate Jesus’s time in the desert, perhaps to assuage guilt or shame. It is written that Jesus used his time in the desert to prepare for his earthly ministry. In recent years, I have chosen to alter the tradition of Lent by taking on a new challenge or discipline. I have used the 40 days to explore a practice that might add to my spiritual development. This approach has seemed more positive, and less likely to end in failure. I have convinced myself that this approach is less about symbolic atonement, and more about embracing God’s presence. Giving up coffee, red meat, or bourbon would begin as a well-intentioned sacrifice, and generally end poorly. Truth be told, these kinds of Lenten fasts never really did much for me.

Earlier this Spring, our daughter and son-in-law invited Peggy and me to join them for a few days in the high desert of Joshua Tree National Park. The cactus and the Joshua Trees were just coming into bloom. The days offered bright sunshine and radiant blue skies. The nights were silent and cold, with endless stars on cloudless nights. We hiked for hours during the day, awestruck, grasping for superlatives that might approximate our experience of wondrous beauty. Here are Joshua Trees in bloom:

The desert landscape is known for its allure to contemplatives and ascetics. I had always imagined this was largely due to the desert’s silence, stillness, and open space. Joshua Tree taught me about the beauty and peacefulness of the desert. I experienced it as an inherently holy place to be.

This is my first Lent in The Land of ALS. Some might suggest the desert is an apt metaphor for living with ALS, because of a perceived bleakness to both landscapes. I’ll admit, since being diagnosed with ALS, I have experienced a sense of wandering in the desert. Every person has a unique path with ALS. There is no charted course that can be mapped out, like a trail in a national park. In the desert I was surprised to note that shades of brown, beige, and gray carry their own subtle vibrance. I’m guessing part of the reason for that is the paucity of other color. Likewise, I noticed that even the smallest cactus blooms draw attention. In the desert, the blue sky seems bluer. And the sunsets are like no other.  

This brings me back to my Lenten fast. Giving up Death for Lent, seemed like it could be a meaningful way for the landscape of ALS to surprise me with rare blooms, bluer skies, and sunsets like no other. 40 days and 40 nights of wandering in a new desert without fear or thought of death. 40 days and 40 nights to experience ALS without looking too far into the future. 40 days and 40 nights to prepare for a new life.

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Pilgrimage as kindness

 

My son William experienced his first pilgrimage walking the Camino de Santiago, the summer of his freshman year at The College of William and Mary. His professor and future mentor George Greenia led the pilgrimage. George has since become a family friend, and William has become our family’s maestro of pilgrimage, beginning with his sister, and then with his parents on the Camino. We have learned from George and now from William that no pilgrimage, and no pilgrim is alike, though there are common elements that define a pilgrimage: 

•  a beginning and an end, 
• movement along the route, 
• liminality in (holiness) space and time, 
•  the experience of beauty/awe/wonder, 
• a rhythm to life, 
• and perhaps a big question. 

Pilgrimage at life’s transitions proves exceptionally meaningful. 

Such was the case for each of us on the Camino de Santiago, 

 Such is the case for William and me now, traversing the glorious California coast in my cousin’s Porche Boxster, at the launch of life and advocacy with ALS. 

William is a currently a second-year law student at Columbia. He has a full and varied life in New York City. I’m pleased for him. I’m his dad, after all, and these successes and his happiness make me proud and happy. So, his invitation to drive me along the California Coast during his spring break, on the eve of my launch into ALS, was welcomed as an offering of great kindness and love. To be clear, he gets to drive my cousin’s Porche Boxster Convertible with the top down along the Pacific Coast Highway. AND, to be clear, I’m in the seat right beside him, for holy hours, in liminal time, along the awe-inspiring coastal roadway. Any parent knows, and EVERY pediatrician knows that any hope of an intimate conversation comes during a captive car ride. This has not been lost on William, to be sure. In a profound way, our roles have been blissfully reversed, and I am a gleeful captive.

Reasonable people, who know me well-enough have asked, post-ALS diagnosis, how it is that I am taking care of myself. It’s a fair question, and one that needs asking. Having ALS requires daily and rigorous care-taking. I swallow handfuls of pills every day, and pay close attention to diet, rest, and physical activity. Trust me, I’m totally into it.

These same people, I suspect, also want to know how it is that I am caring for the deeper parts of my self.  How am I taking care of my soul, now that I am facing down the complete disability and eventual demise of ALS? Also a worthy question that bears asking.

Regarding this, I have early data to report from the pilgrimage.  

Proximity to love and kindness begets trust in love and kindness. 

The meaning of pilgrimage comes from the doing of the pilgrimage.  

Abiding in liminality, with intention and an open heart, ready to embrace awe, wonder, and beauty creates a grand opportunity for meaning-making.  It's the most natural way I know of to care for the soul.

The path of love and kindness, and this on-going pilgrimage may be our best hope to make meaning out of the tribulations of ALS.  

As William said in the first hours after we received the formal diagnosis of ALS, after the tears, and shock had settled, 

"Well then, I guess it's time to get turbo-charged."  

Amen son.  Let's go!

Launching a pilgrimage of kindness

This blog began as a way for me to write about the fruits of kindness. Patients and families would often recount the simplest acts of kindness with immense gratitude, and it seemed relevant to share their stories. Perhaps their gratitude could inspire others. Perhaps my reflections on the varied examples of kindness could create a ripple of awareness for kindness as an essential component of compassionate, quality health care. 

I retired from the practice of pediatrics last month. I can claim 40 years as a clinician, having seen patients since 1982. The last 20 years have been dedicated to solo practice in Charlottesville, Virginia. My labor of love. And for the last 10 years, I added academic medicine to the mix as an Associate Professor of Pediatrics at the University of Virginia. A separate, yet related labor of love. 

In all of these 40 years, in all of the practice settings, I have been guided by something I learned from the dean of the Lienhard School of Nursing, in Pleasantville, NY, where it all began. She taught us that our primary task was to hone the therapeutic use of self. Over time, as we matured, the therapeutic use of our whole selves would guide everything else. Certainly, our intellect, our fund of knowledge would be a mainstay of expert care, and a key component of the whole self. Achieving intellectual competence, especially in training, generally takes precedence over everything else. However, the dean reminded us that our compassion, our communication, our empathy were equal and essential aspects of the whole self and would be needed at each encounter, to be used therapeutically to ensure true quality of care. 

To this list of therapeutic virtues, I add kindness, because it has a simplicity that is easily understood by any reasonable person. As an example, before leaving the bedside, a doctor asks simply, “Is there anything I can help you with before I leave?” Or the nurse arrives with a cup of cool water for the family member who has been up all night with an aging parent who has been admitted with delirium. Or, the clinician stops in the middle of the routine mechanics of patient care to respond with kindness and empathy, when hearing parenthetically about the unexpected death of a grandparent, or pet. Or, how about a simple, genuine greeting and introduction when entering the exam room. I’ve been warned that therapeutic boundaries become tricky when we introduce hugs and tears to the list, but they can also be part of the whole self. 

I am writing this while on a pilgrimage with my son, traveling the California Coast. It is a liminal time for me to explore the transition from doctor to patient. In December I was diagnosed with ALS, amyotrophic lateral sclerosis. ALS is a tragic diagnosis which portends a limited lifespan, and certain progress toward complete disability with the need for total care. There is no cure. The underlying biological cause is unknown, and the few available treatments have limited effect in altering the course of the illness. It’s a harsh reality. 

Many questions arise. What is the role of the self as a doctor-patient? How do I reflect or offer kindness in this new role? How might I engender kindness in the health care setting now that I am no longer the clinician? What are the gaps in ALS care? How can the gaps be assuaged or eliminated, especially those that limit the opportunities for acts of kindness? How does kindness inform advocacy? What are the fruits of kindness as experienced by me, the patient with ALS. And lest we forget, how is kindness germane to those who are walking the lonely road with me, my dear ALS family and friends? https://www.als.org/ https://iamals.org/

The blog returns to reflect on these questions, and to chronicle my on-going pilgrimage of ALS.  

Expanding the Frontiers of Hope

With the advancements of science and technology, it is now possible to reliably diagnose rare conditions early in pregnancy.  Likewise with the explosion in genetic analysis, we can now identify the cause of previously uncharacterized syndromes.  Whereas these diagnostic capabilities offer the certainty of a diagnosis, they also have the potential to launch families into new, and often uncharted waters filled with an array of questions about the future. 

www.trisomy18.org

Many rare conditions carry risks of future cancers, intellectual disability, autism, psychiatric co-morbidities, or seizures.  The risks of future diagnoses are based on small numbers of patients with conditions that have variable presentations and outcomes.  Parents are faced with statistics that we might try to represent as a slim possibility, but we must remember that they are seeing this slim possibility through the lens of a parent whose child has a rare condition.  

Receiving a diagnosis of a rare condition is a random and unimaginable event for any parent.  Making the leap to seeing your child with a whole series of future random and unimaginable events is actually quite natural.   If we then add to this the anachronistic label of “lethal diagnosis”, our offers of the potential for ever-expanding technological boundaries may not seem so comforting. 

My experience has been that most parents will do anything within their means to help their children.  Parents of children with disabilities or medical complexity are no different and are frequently quite innovative in their attempts to create opportunities for participation and inclusion.  When the status quo is not enough, they advocate for something different or they figure out a way to make it work. 

Statistics also provide a window into survivability.  We know with certainty that many conditions carry the prognosis of a limited lifespan.  Since it is nearly impossible to predict the length of a lifespan, especially as the boundaries of science and technology continue to expand, we land, once again, in the arena of uncertainty.  Parents and clinicians alike must learn to live with uncertainty.

So, where does hope fit into this equation?  We all need hope to continue in the day-to-day care of our children and patients.  We certainly need hope to support one another.  We also need hope to innovate, to advocate, to make meaning and to risk love.

And what about the notion of false hope?  If we know that an outcome is unlikely, is it wrong or misleading to encourage abundant hope?  Is it truly in the best interest of the patient, family or clinician to protect each other from the disappointment of a sad outcome, even if it is anticipated?  Is it any less sad if it is unexpected?   Is it false hope, to imagine with a parent that their child will walk, or talk, or make it to Disneyworld with a ventilator in tow?  I don’t think so.

Encouraging hope in a parent or caregiver is an act of kindness.

Recently I was invited to take part in an annual round table dinner-discussion hosted by the Anne L. Brodie Fund for medical education.  The fund also supports students as they learn the "skill and heart to care for patients" with the aim of becoming The Brodie Renaissance Physician.

The Brodie Renaissance Physician: Is called to artful, compassionate, 

patient centered care. Takes responsibility for the whole patient / person. 

Is adept with the newest technology but also possesses 

finely honed listening and physical exam skills 

to limit dependence on technology. 

Strives to improve on each individual patient encounter, 

and also on systems of practice. 

Is a scholar, teacher and role model.

In preparation for our dinner discussion, each guest was asked to reflect on the intersection of technology and caring, and to give an example of a situation where technology could never replace the physician.  Offering hope, and expanding the frontier of hope seemed an apt example from my work with families of children with medical complexity.

As I have gotten to know families whose children carry a “lethal diagnoses” or live with significant, life-limiting disability and medical complexity, I have seen magnificent hope blossom amidst slim possibility for success.   I have experienced the frontier of hope expand as parents and clinicians join together with proximity to the challenges and the risk of disappointment. 

 

Extending hope across the chasm of feared disappointment is a great kindness.  Learning to expand the frontier of hope is as significant as extending the boundaries of science and technology.   We need to challenge ourselves with equal energy and determination on both fronts.

Kindness as Respite

I heard a new one this week.  That is, I heard tell of a simple triumph that caught me up short. 

A family recently put together the capital to buy a van to transport their 12 year old son who requires complete care.  The van came equipped with a lift and more space for his motorized wheelchair.  They were delighted to have new freedom to get around town and to his appointments with less effort.  The van also meant they could hit the road to visit family.   

Imagine you are on the road with your child and you need a pit stop.  It might be awkward to take your young son into the Ladies room, but it happens when they are small.   If your son is 12, they can generally manage on their own, with clear instructions about where to meet and an assurance to wash hands when he is done.

But if your 12 year old son is not independent, and you are traveling alone, what happens then?

This mom's solution:  a Cabelas porta potty for the van. 

Brilliant.  And, what a poignant reminder of the creative thinking, resilience, and unimaginable planning that is required to care for a child with significant needs.  

The porta potty for road trips also seems to me an apt metaphor for the nonstop life of caregiving.

This story got me thinking, once again,  about respite care.  My patients mention the lack of respite care all the time.  Most often it comes in an off-handed comment about how long it has been since they had dinner together, saw a movie,  went dancing.  One mom recently said, "I just want a couple of hours to go to Lowe's with my husband.  I'm so tired of trying to pick out paint with FaceTime."

Respite care is a necessary kindness in the life of constant caregiving.  

Who has not faced the dilemma of finding a sitter when you really need one?  Now imagine if your child has a tracheostomy, receives g-tube feedings, or needs a diaper change when he is 12 or 20.  The pool of sitters suddenly gets a bit smaller, and the risks of leaving your loved one loom larger. 

One small solution in my world comes in the way of undergraduate nursing students.  Our School of Nursing maintains a list of families needing respite care.   The students contact the families directly and work out the arrangements.  Frequently, the families grow close to the students and follow their progress through school.  It is a stopgap measure for sure--one more piece of the caregiving puzzle.

Not long ago, I visited a number of pediatric hospices across England.  Each health district in England has a pediatric hospice where families can utilized respite services.   For some families this makes a vacation possible, or a short trip for a family wedding or funeral. This seems such a sensible pubic service that respects and supports the family caregiver.  

Arnold P. Gold: A Legacy of Hope and Kindness

Ellen Seidman writes a blog called Love that Max: Kids with Disabilities who Kick Butt. In a recent post titled "You never forget the really kind doctors (or the not-so-kind ones)" she recalls an encounter with Arnold Gold, a pioneering pediatric neurologist.

Ellen's son, Max, suffered a stroke as a newborn.  She met Dr. Gold while Max was in the NICU and their world had turned upside down.  "Babies can have strokes?" she wondered in panicked disbelief.  What Ellen remembers most about Dr. Gold was his warmth and how he talked with them about what was possible instead of what was ominous. He concentrated on how they could help Max.  He provided hope at a time when their world seemed to be collapsing around them.

Arnold Gold saw patients until the age of 88.   He passed away in January, but a foundation named for him lives on.  It's mission is to support the humanistic passion that motivates clinicians to enter healthcare in the first place.  Here is their mission statement:

The Arnold P. Gold Foundation’s overarching goal is to create the Gold Standard in healthcare – compassionate, collaborative and scientifically excellent care – to support clinicians throughout their careers, so the humanistic passion that motivates them at the beginning of their education is sustained throughout their practice. We strive to ensure that care and respect always govern the relationship between practitioner and patient. www.gold-foundation.org


One of the signature innovations of the Gold Foundation is what we call the White Coat Ceremony.  The ceremony serves as a rite of passage for incoming students and is a way to elevate the value of humanism as the core of healthcare.  For physicians, it includes reciting the Hippocratic Oath.   Many schools now engage their students in a collaborative process to write their own oath which they will recite again at graduation.


In 1988, well into his academic career, Dr. Gold was conducting rounds when a new medical student presented a patient as the "the brain tumor in 209."  According to his New York Times obituary, Dr. Gold's response was just as you might suspect.

‘The brain tumor? Isn’t there a child involved in this? Tell me about the child, tell me about the family. Tell me how this is impacting on the family. Do you know any of this?’ ” 

Apparently, the student knew nothing of the humanity of their patient, and so began Dr. Gold's quest to protect and support the humanistic passion that motivates students at the outset.  He focused on what was possible and thereby has left us with an enduring legacy of hope and kindness.