Welcome to Health Hats, the Podcast, learning on the journey towards best health. We will learn what it takes to adjust to life’s realities in the awesome circus of health care. Follow Health Hats, the Podcast on your favorite player.
I am Danny van Leeuwen, a patient-caregiver activist, a patient with Multiple Sclerosis, care partner to my grandmother, mother, and son’s end-of-life journeys, a registered nurse, a person with health technology experience, and a leader in healthcare administration. I wear many hats. My guests and I muse about making health choices and decisions, communicating health information, sharing what works, and supporting each other.
I feel awash with melancholy; irritated when hearing others’ forced optimism, silver lining, time of opportunity blather. I’m outraged that the collective we didn’t have the foresight to keep maintained stockpiles of ventilators and that right-to-lifers consider the elderly and disabled as expendable. I’m dreaming of hugging my sons, daughters-in-law, and grandsons and waking up feeling empty and afraid. I know the Covid19 novel coronavirus is going nowhere. We can best hope to sustain until brains, money, ingenuity, and time converge to rapid testing, tracing, vaccines, and a different social, financial, and political order and supply chains. My melancholy, anger, and emptiness feel right and understated. The world through our senses has changed, forever. Kiss it goodbye. This week, it touched me directly. An old friend, a 70-year old practicing primary care doc with diabetes, lies in a Detroit ICU on a ventilator. As Andrew Cuomo says in his daily briefings, the virus doesn’t discriminate. It affects us all. If not now, soon.
Today, we experience the impact of our short term, bottom line-oriented, feudal acute healthcare system. It’s been about business, money, and power. Our healthcare was only working for some before, it’s ready to crash now. The collective we appreciated public health only in its absence. We desperately need it now.
No grief without love and appreciation 02:12
OK. I need to stop ranting, or I’ll drive myself helpless. Let’s review the situation. Melancholy, anger, and emptiness feel awfully familiar. Wait, they smell like grief, tragedy, and death – my steady companions -sometimes on my shoulder, always in my pocket. When my dad died suddenly at 45, I spent a month in shock. My friend Jerry helped me start to grieve. My life changed massively. I was young, 19. Good news, I had great friends. We’re still friends 50 years later. I grew up fast. I met my wife. I was ready for a relationship – silver lining. When our boy, Mike was dying, I got some help. Gregor taught me to take stock of my basic habits – diet, hydration, exercise, sleep – and hone those habits. He helped me see my major stressors and manage the manageable one’s. Build and strengthen health routines. Manage manageable stress. Now I’m a person with a neurodegenerative condition that’s never going to get better. I grieve that almost every day. Why me? Multiple Sclerosis prepared me for today’s tragedies. I’ve honed my habits and know how to operate at peak capacity. I have tools in my toolbox to manage my seriously annoying symptoms. This podcast is one of the tools.
What do my dad, my son, and I have in common? I love us. They are gone and I am here. I’ve learned to embrace grief. Grief is feeling my heart. It’s the stuff of life. The joy of love and appreciation occur first. Then there’s loss, grief. No grief without love and gratitude. Same for you – feel grief? Let ‘er rip. You’re feeling your heart. Let’s give thanks for that love and gratitude.
OK. That’s pretty heavy. Now what? As Gregor taught me – take care of the basics and manage manageable stress so you have energy for the unimaginable and unmanageable. Hone your and your family’s routine of good habits – fluids, food, exercise, rest. Keep connecting with whatever community you belong to. Invite a couple more people in. In our town we have 6 pm connect. Look out your window, sit on your stoop and wave, say hello. We each need to find a source of realistic honesty, compassion, and leadership to guide us, advocate for us, and reassure us. Let us know what you find. I will share.
15-minute advantage 05:31
Another point: 61 million people in the US have different abilities than you, temporarily able-bodied people. We have a 15-minute advantage on you. We know how deal with unwelcome, strange circumstances. We know how to ask for and offer help. We know how to build a team. We know how to navigate from a chair, a bed, a fog, in pain, with canes. We know how to live at peak performance with a dizzying array of conditions, circumstances, and confusions. We have a 15-minute advantage on you. Don’t under-estimate the importance of fifteen minutes You need us. We want to share and teach. We have much to share and teach. We are not expendable. When you have the opportunity and bandwidth, reach out to the less able-bodied. Spend some time with us. Connect, listen, learn, and appreciate. You won’t have far to look for us. We’re everywhere. We are in this together, me and you and the world.
I don’t feel better. That’s OK.
I podcast to make a ruckus. Making a ruckus means sharing stories of learning on the journey towards best health. I’m trying to move the needle of health care a couple of degrees towards more self-confidence, more participation, more collaboration, more dignity and more inclusion. Wait a minute. I should tell you the truth. I’m a selfish person at heart. I’m a storytelling, patient/caregiver activist, living at peak capacity. I couldn’t say that before my diagnosis. I podcast mostly for myself. My show notes are comprehensive with a full transcript and many resources. Find the recent podcasts here https://www.health-hats.com/pod.
Follow my blog, podcasts and resources through my website https://www.health-hats.com. See around the block.