When my son, Mike, was dying I knew I needed help supporting Mike AND survive and thrive myself. I went shopping for a counselor. No surprise to you – I am not an easy patient. But I was willing to do the work. My shopping eventually led me to three counselors. The first, a friend highly recommended. This friend had survived leukemia with several years of chemo, stem cell transplant and heart surgery. His mental and spiritual health were shaken. I could see that this counselor had really helped him. I made an appointment. The guy popped Altoids Curiously Strong Peppermints the whole time. To keep himself awake? No go. Still shopping. The next counselor I knew from work. She was on my providers’ council. She asked questions. I answered. How did I feel…? I didn’t need talk therapy. I had family and friends. I needed a roadmap. How do I manage myself? The third counselor spent 5 minutes asking me about diet, sleep, exercise, pooping, my family, transportation. You have to take care of the basics to manage grief. Then he said, there’s stress you can manage and stress you can’t. Grief is stress that’s hard to manage. There it is. It’s not going away. Now tell me your top two stresses in your life right now. That was easy. On top – My mother. (That’s another story for another day). Tell me more. I told him more, another 10 minutes. Then he gave me three things to try to help manage the stress with Ma. I spent 45 minutes of the allotted hour with him! He was a keeper. I tried all three recommendations with Ma. I could pull off two. Rapidly less stress in that arena. Therapy from a master is worth shopping for! He’s still part of my team. I talk to him on the phone from time to time – like when I was first diagnosed with Multiple Sclerosis. Read More
Sixteen years ago on November 18, 2002, our son, our brother, our friend, Michael Funk, died of metastatic melanoma at age 26. Mike said that he wasn’t born with a tattoo on his butt telling him how long he had to live. What a gift. Mike was a gift. His perspective about dying was a gift. One day we were sitting at the kitchen table talking about dying and superpowers. Mike thought that he and I had the same superpower: we both accept what is. Yup, he died young. That’s life. You open your heart and tragedy just walks right in. What’s the alternative? Closed heart? Not for me.
Welcome, my dear Health Hats blog readers, let me introduce you to the birth of Health Hats, the Podcast. We are here to empower people as they travel together toward best health. Best health includes physical, mental, and spiritual health. Today’s blog post and podcast are about Mike who found his best spiritual health over the last year of his life, as he died. Read More
Best Health includes physical, mental, and spiritual health. Michael Funk, my son, died at age 26 on November 18, 2002, of metastatic melanoma. Mike found his best spiritual health in the last year of his life as he died. As Mike said, I wasn’t born with a tattoo telling me how long I had to live. This first episode of Health Hats, the Podcast, celebrates Mike’s journey through a montage of an interview with Mike several months before he died, a conversation with Bob Doherty who conducted that interview, and stories about my experiences with Mike. Listen as we try to make sense of this reality.
Success is feeling like I have too much to do two days a week, not enough to do two days a week and not thinking about it for the rest. Today is a too much day. I missed a scheduled call. I was writing this post and missed it!! Too funny. How do I manage when I actually do manage, you ask? Well, if my wife wants to do something with me, the answer is yes. Same with my kids and grandkids. Then my health routine – steps, stretching, strengthening, balance, and stress management. Playing my horn. Blogging weekly. Finally responding to requests from my network cronies, making money and advocacy. (Note: I am retired and my family is all independent and healthy). So really the slack for me is only in those last ones. And health is the blowing up wildcard. When health dips, my spiel is BS.
My latest struggle is saying no to pro bono work. So many intriguing opportunities. But time is precious. Keys to time management success are well-defined commitments, deliverables, and timeframes; calendar, and task lists; plus strong partners and collaborators. Strong partners and collaborators make the work fun and efficient. The fun stokes my fires. This week the Society for Participatory Medicine’s one-day conference stoked my fire. What stokes yours?
Photo of Ruth and Ruben van Leeuwen circa 1947
I was riding my trike this morning at 6:30. It was beautiful, dry, cool, few people out. My pathological optimism has escaped me. I needed serenity following my recent MS infusion. I was hoping that I’d find clarity for the post I started yesterday about health data, health research, learning, and adjusting. I’m underwhelmed by our collective ability to learn and change based on experience and evidence. Where do I go with this germ of a post?
But no, I’m getting more and more agitated with every pedal. First, immigration and refugees. Then Brett Kavanaugh’s Supreme Court nomination. I can’t shake it. No serenity, no nifty pearl for my post. Just escalating sickened outrage about power, fear, lack of empathy and its effect on our community well-being. Deep breaths, mindful meditation have no effect.
My parents, both Holocaust survivors, were not religious. But I heard Love thy neighbor as thyself often and I watched them live it. My mom, when she finally began to speak about her experiences in hiding, emphasized her gratitude to the people who hid her at great risk to themselves. She would say, I wasn’t brave, they were. I just survived. They were the heroes. The Trump administration is determined to wipe out immigration – both legal and illegal. It makes no sense to me. It flies in the face of decency, empathy, common sense, and evidence. Since this is a healthcare blog dedicated to empowering people as they travel toward best health, I’ll stick to that lens. Most people want to live the best life possible with their families, contributing something to their communities. This I believe. If they can’t be safe in the home, they want to move if they are able. If they can’t be safe in their countries, they want to emigrate. Even in the face of great risk. We in the US are fortunate.
Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!
So we do the work to assimilate! Is that so hard? It’s moral, ethical, empathetic, right. Practically, the fastest growing occupations in the US are home health aides, personal care assistants, medical assistants, software developers, nursing assistants, and registered nurses. All positions facing shortages. All positions affecting our communities’ health. Who do we think is going to take care of us and develop tools that support our care as we age? Immigrants.
Second, Brett Kavanaugh’s Supreme Court nomination in the face of accusations of sexual assault. Again, outrage about power, fear, lack of empathy and its effect on our community well-being. Our Senate Judiciary consists of old white men without lived experience of assault and powerlessness (or they haven’t come out yet). Maybe the most powerful office in the country with a lifetime appointment affecting the wellbeing of all of us.
OK, other people can opine on these topics better than I can.
For me, the central feature is power – the imbalance of power. Those in power want to stay in power at all costs. I think it’s a human condition of the ages. Evidence, curiosity, empathy, have little role. We know that this imbalance of power is evident in our healthcare business practices and our healthcare decision-making. Fortunately, I still have a reservoir of pathological optimism. My parents lived through the Holocaust, the country survived the Vietnam experience. I believe that there are cycles of learning and relearning, and relearning again. I believe that the response to power imbalance is to get more people with lived experience and less power a seat at the table, especially the tables of governance. For immigration and our government, our power is in the ballot box. Elect people with lived experience who grew up farther from power and wealth. Please vote and help your neighbor register to vote. And I’ll get back to my advocacy to bring more people with lived experience to the tables of governance, design, operations, and learning in healthcare delivery, business, research, and technology.
I fell in New Orleans a couple of months ago flat on my face. No injuries, scraped my hands and arms. Freaked me out a bit and my friends. A week later, back home, I fell again. Same thing. My primary care doc and neurologist always ask, have you fallen? Falling is one of two outcomes we track together. (The other is, are you still playing your saxophone?) It’s been a long time since I’ve fallen. Outside. A year or more. I had to stop shoveling snow. I didn’t mind falling in the snow. Kind of fun. Worried my family, though. I do fall inside when I’m turning suddenly, like in the pantry or trying to vacuum. I’m starting to be a bit alarmed about this increased falling. I stumble a lot normally but always catch myself. This is stumble and fall. Not good. I worry about it at 2 am the apocalyptic hour. Otherwise, I’m pathologically optimistic and flex my superpower: accepting what is.
I met a buddy (we’ve been dear friends for more than 40 years) in Washington recently. He wanted to go to the National Gallery. He suggested we rent a wheelchair. I’ll push you, then we can spend more than 30 minutes looking at the paintings. He knows that my sightseeing endurance has been steadily decreasing. We spend more time to rest me each time I see him. I was reluctant.
My wife wants to travel. I’ve been resistant. I just don’t have the stamina anymore. I’ll be a drag. But, I love having adventures together (the nonhealth-related kind).
After the falls, I was in Baltimore for a meeting. I was telling a colleague about my falls. He uses an electric wheelchair, collapsible, with a joystick. He said I should consider getting one. He’s an amputee. He can walk most of the time quite well. Often the wheelchair will spend four months at a time in his garage. He doesn’t need it. But traveling can be wearing. It collapses and he can gate check it on the plane. Weighs 50 pounds. Folds with the pressure of one finger into the size of a medium size suitcase. Has a range of 14 miles. It’s 23″ wide. I’m intrigued. As a habitual doer, I bought one two weeks ago.
I feel like a charlatan. I can walk. I’m not paraplegic, I didn’t have a stroke. My chiropractor said, as long as I keep up my 3500-4000 steps a day, think of the wheelchair as an extender, not a crutch. What’s wrong with a crutch? I use a cane. Anyway, I’m testing it out. I’ve been aware of community accessibility issue for a long time, but now I appreciate every slope, every intersection, every pothole and crack, every lip that’s greater than one and a half inches. I’ve had to get out of the chair and right myself several times. That feels ridiculous.
When my mom starting falling, I suggested that she get a cane. Oh no, honey. That would be silly. I don’t need a cane. It would look ridiculous. I said, Ma, I use a cane. Do I look ridiculous? She replied, oh, no honey, I’m so glad you’re safe. It’s a great accessory for you. No irony.
So, anyway. Sigh. Soon I’ll be comfortable enough motoring around in it. (I need to give it a name). Next, I’ll have to take it traveling. Ok, maybe I’ll feel a bit ridiculous. Pride recedes, Europe on the horizon.
My wife and I spent some time trying to adopt a teenager after our son, Mike, died. We chose the adoption agency because, with them, the child made the decision whether or not to be adopted by us. The teen with whom we developed a relationship decided not to be adopted by us. Hard for us, but success for her! Empowered adoption. The clowns of Laughter League at Boston Children’s Hospital poke their heads in the room, May we come in? When the child says, No, you can’t come in my room, it’s success! Empowered hospitalization. Katherine Treiman at RTI shared an article with me about self-dialysis, Is “Empowered Dialysis” the Key to Better Outcomes? People connect themselves to their machines, draw their own blood, clean up the dialysis equipment themselves. More training time, lower mortality rates. Empowered dialysis, empowered hospitalization, empowered adoption. Wow. Radical. Controlling our own lives. A person, not a patient. What a thought. I know the fatigue and stress when I feel powerless. My MS symptoms are much worse. I feel better when I’m in control. What I really like about empowered decision-making is that it doesn’t matter what decision is made. The physical, mental and spiritual benefits of empowered decision-making and care may be tough to measure. Is that because we don’t measure it or because we don’t know how to measure it? Still, we should practice it, appreciate it’s wonder, and learn to measure it.
Apologies for the duplicate post. I changed hosts and lost this post in the migration.
My friend and story-teller, Susan Spivack, sent me this poem. Really spoke to me. I may be pathologically optimistic and live in a comforting, safe, privileged bubble, but I allow myself moments of despair, feeling sorry for myself, and overwhelmed with the pain I feel around me. Doesn’t this say it beautifully?!
WHAT RESEMBLES THE GRAVE BUT ISN’T
Always falling into a hole, then saying “ok, this is not your grave, get out of this hole,” getting out of the hole which is not the grave, falling into a hole again, saying “ok, this is also not your grave, get out of this hole,” getting out of that hole, falling into another one; sometimes falling into a hole within a hole, or many holes within holes, getting out of them one after the other, then falling again, saying “this is not your grave, get out of the hole”; sometimes being pushed, saying “you can not push me into this hole, it is not my grave,” and getting out defiantly, then falling into a hole again without any pushing; sometimes falling into a set of holes whose structures are predictable, ideological, and long dug, often falling into this set of structural and impersonal holes; sometimes falling into holes with other people, with other people, saying “this is not our mass grave, get out of this hole,” all together getting out of the hole together, hands and legs and arms and human ladders of each other to get out of the hole that is not the mass grave but that will only be gotten out of together; sometimes the willful-falling into a hole which is not the grave because it is easier than not falling into a hole really, but then once in it, realizing it is not the grave, getting out of the hole eventually; sometimes falling into a hole and languishing there for days, weeks, months, years, because while not the grave very difficult, still, to climb out of and you know after this hole there’s just another and another; sometimes surveying the landscape of holes and wishing for a high quality final hole; sometimes thinking of who has fallen into holes which are not graves but might be better if they were; sometimes too ardently contemplating the final hole while trying to avoid the provisional ones; sometimes dutifully falling and getting out, with perfect fortitude, saying “look at the skill and spirit with which I rise from that which resembles the grave but isn’t!”
~Anne Boyer, “This project was co-curated by the journalism nonprofit the Economic Hardship Reporting Project and its Puffin Story Innovation Fund.” ~https://billmoyers.com/story/poetry-month-what-resembles-the-grave-but-isnt/
My Aunt Kato (Kikke) Pomer (van Leeuwen) passed away this week at age 101. Kikke was a Freudian psychiatrist who began medical school in the Netherlands just before the Nazis invaded. She and her family escaped to the United States, She couldn’t gain admittance to medical school here because she was a woman, a Jew, and a refugee. A family friend suggested that she meet Albert Einstein and ask him for a reference. She did and he did. She graduated from Johns Hopkins Medical School and practiced in LA into her 90’s. Aunt Kikke inspired and encouraged me in nursing, advocacy, and in life. I’ll miss you.
My pathological optimism is under assault. How do I live with myself as a privileged white man? How do I continue my advocacy as a patient activist? This week I listened to Terry Gross speak with Maya Dusenbery on Fresh Air about her book, Doing Harm, The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. I listened to Amy Chua speak about her book Political Tribes: Group Instinct and the Fate of Nations on the Lawfare Podcast. I watched Samantha Bee on Full Frontal talking about women, history, and the treatment of pain. The wind has been sucked out of my sails. I may style myself a feminist, but the country, the healthcare system, medical research and the breaks are designed for me. I certainly have my challenges, but they are minimal compared to those outside my shrinking white man minority tribe.
I care about learning what works for people – groups and individuals – as they strive for best health. Yet most historical evidence – research – has been designed for white men, not women, not refugees, not people with limited means and power. It makes me crazy. What is wrong with us? Plus, our nation seems to increasingly petty, mean, shortsighted, and self-interested.
OK, white boy, get over it. I once got myself in trouble at diversity training. I said, My father was gay, my parents were holocaust survivors and refugees, my brother and sister are of mixed race, and I’m a man in a female dominant field – nursing. And now I’m disabled. My prejudices aren’t about gender, religion, race, disability. I’m prejudiced against thoughtless people. I was not appreciated.
Anyway, nothing has changed from before this week and now. The world is still crazy. I live in a racist, misogynistic, mean-spirited country. Thankfully, there are tribes of people trying to do the right thing. I can’t afford to lose my pathological optimism. I’m still working more and more on advocacy about making collaborative health choices (informed decision-making) with my health team based on science and my environment, circumstances, and values. Treating health choices as a grand experiment is still a sound approach. Try stuff, see if it works. If it doesn’t, adjust. I am so heartened by the March for Our Lives initiatives. Activated young people are our hope and our future.
It’s Passover, time to celebrate liberation. Liberation is not a destination, it’s the journey.
Thanks for listening to me rant. Good to be on this journey with you. We have work to do.
Thoughts on Liberation
Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. Martin Luther King Jr.
I did nothing but international liberation politics for ten years, and usually it was like, you gain an inch, you lose a half an inch. It’s slow going, man. Steven Van Zandt
If you’ve got nothing to dance about, find a reason to sing. Melody Carstairs
On the road to liberation, learn to press Next. Even if there is no such an option. Talismanist Giebra
I am the bended, but not broken. I am the power of the thunderstorm. I am the beauty in the beast. I am the strength in weakness. I am the confidence in the midst of doubt. I am Her! Kierra C.T. Banks
I trust my primary care doc. I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. That certainly doesn’t mean that we don’t question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when I’m in a crisis and I can’t think clearly, I will listen to my immediate family and my two lead docs (in that order) and I’m likely to do what they recommend… unless I’m unsure. Trust is for when I need to make a decision but can’t or don’t want to. And these are all people’s opinions about what I should do with my life. I know I should lose weight. People I trust say I should lose weight. It takes a certain alignment of the stars for me to lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again three weeks ago. I’ve started to lose the same 30 pounds again.
I’ve questioned my primary care doc about taking cholesterol-lowering meds. She wants me to take them. I’m not so sure. The evidence appears pretty clear. I’ve been taking them for nine years because I trust her. Now with Medicare, they’re going to cost me more. It has me thinking again. I still trust her. I’ve stopped taking them.
I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues. Now I know I have multiple sclerosis, not heart disease. I’m a trusting fellow until I’m not.
A friend of mine had breast cancer. She asked her doctors, “Should I take chemo?” They all said yes. She trusted that they wanted the best for her, but wondered where their trust in that advice came from? Was their research current, reliable, and apply to her as an individual? She did the chemo.
Webster says, Trust = you can rely on the integrity, strength, or ability of a person or thing. Trust is respect + communication + context. Making choices about your health in a bed of trust is hard enough. Making choices in the swamp of distrust can be crazy making.
As a person, I try to build trust – in relationships. It starts with being trustworthy. I feel better in that bed of trust. Still, trust in myself, ourselves, is key. Ultimately, it’s our lives. We face the consequences of our decisions. I’m greatly relieved that I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.