Family: Open Heart, Unconditional Love, Boundaries #149

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My son. Mike, died 19 years ago, age 26. Wasn’t born with a tattoo telling him how long he had to live. Blood, married, intentional families. Love & boundaries.

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Credits

Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Sponsored by Abridge

Thanks to these fine people who inspired me for this episode: Robert Doherty, Simon and Ruben van Leeuwen, Ann Boland, Anica Madeo, Andrea Condit, India Duncan, Lenore Nowicky

Links

Related podcasts and blogs

Superpower: Accepting What Is #1 & #99

Best Spiritual Health, Dying

Deconstructing Grief

 

About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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Creative Commons Licensing

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The Show

Proem 2021

I wasn’t born with a tattoo on my ass telling me how long I have to live. Welcome to the third anniversary of Health Hats, the Podcast, episode number 149. On November 15th, 2018, the first episode honored my son, Mike Funk, who died on November 18th, 2002, nineteen years ago, age 26, of metastatic melanoma. Mike, a wise poet, found his best spiritual health in that last year of his life. Hence, the most memorable sentence in my life. I wasn’t born with a tattoo on my ass telling me how long I have to live.  I’m grateful to have known Mike, my son, our brother, our friend.

I resurrect this episode to celebrate Mike and celebrate family – blood family, married family, intentional family. Mike was part of our intentional family. He was our son from other parents. Mike and I mused often about family especially in his final year. As you can imagine his intense feelings about his blood family and his intentional family colored those conversations. Ever the poet, we talked about the challenge of family as unconditional love, especially when you’ve been treated badly, neglected, abused, and left. We spoke about boundaries, unconditional love with boundaries, standing up for yourself, protecting yourself, setting limits.

On this anniversary of dying, podcasting, life, I’m celebrating my families, my supporters, listeners, readers, and compatriots. I miss Mike, my mom, Ruth, my Uncle Leon, my sister-in-law, Peggy, my friend Bob Doherty. The partial list grows longer as I continue to experience life. Yet, life is good. Gratefully, here you go, episode one, ninety-nine, and 149. Happy Thanksgiving.

Open Hearts 2018

Health Hats: In this session, I’ll share some tape of an interview with Mike a few months before he died. Bob Doherty conducted that interview and some thoughts and stories from me. One day, Mike and I were sitting at the kitchen table, talking about dying and superpowers. And Mike thought that he and I had the same superpower. We both accept what is. Not the ‘life sucks, what’re you gonna do’ variety of acceptance, but the ‘yup, here is impending death, how can we live our best lives’ variety.

‘Yup, he died young. Young death happens a lot. You open your heart, and tragedy walks right in. What’s the alternative, closed heart? Not for me. So, let me set the stage for you. This recording happened on July 17th, 2002, at my 50th birthday party. We had the party in the Potato Barn in Schoharie County, New York. When you hear some of the audio, you’ll hear a lot of noise. I’m able to filter some of it out, but not all of it. So here we are at my 50th birthday party.

Love myself 2002

Bob Doherty was interviewing Michael Funk. I’m sure you’ll be able to tell who is who.

Michael Funk: Yeah. I meant to just shoot questions, and we’ll just rap.

Bob Doherty: All right. Why don’t I ask you the same questions I want to ask other people. How did you meet this jamoke called Danny?

Michael Funk: I was going to school with his oldest son, Simon.  I don’t know, a mutual friend introduced us and I went over to his place, decided that it seemed really comfortable and the type of environment that I hadn’t experienced before. I just wanted to hang out there. I didn’t really know Danny and Ann too well, I guess I met them on the first day. I just kinda came into the house and didn’t leave, and they were okay with that. It was never an issue about who’s this kid, why is he here all the time? Why is he eating all our food? So I just started eating all their food right from the start, and they just made me welcome. It was the first time I’d seen a nuclear family. I don’t want me to say this is a traditional nuclear family cause it’s not. It’s and very amazing and dynamic family, but they’re all about just bringing you in and giving you their love and trying to understand you’re trying to help you understand yourself. It was an environment I didn’t want to leave, and I didn’t have to. There you go.

Health Hats: I remember Mike coming to live with us. He just appeared, came home with my son Simon and he never left. We did go talk with his dad and suggested he come live with us. And his dad was fine with that. That was that. I can’t say it was always easy. Mike was always good to us, my wife and I, very polite, very considerate, very loving, but he was a crazy teenager, but he did his homework before he did his crazy stuff, which we really appreciated.

Bob Doherty: You had two awful go-arounds with cancer intervention recently. Then more bad news. Tough thing to take.

Michael Funk: My thing is it’s not awful. It’s not tough. I have a philosophy of life, that life just happens. And I don’t mean to say that I’m passive about it. But that is going to happen, and you got to make your peace with it. And then it’s like a letting go. I understand it. Sometimes I hate trying to explain it because it sounds simple. It sounds like I almost have developed it by not thinking about it, but tomorrow is going to happen regardless of what I do. I can be happy about it. I can prepare myself everything I can prepare myself to be. And those things now are like; I want to be a loving person. I want to be around the people I love. I want to be happy, which isn’t necessarily quantifiable. And so I expect these types of things, and I get them. I don’t need to; I don’t need $50,000 a year. I don’t need a college degree. I don’t need a car. I don’t need these possessions. I’ve got an amazing family that I can hug whenever I want. This isn’t stuff I grew up doing.

Bob Doherty: I had a strange interaction with Danny about a week ago. We were talking about you and your diagnosis. I said to Danny that I look for justice in the world. I want things the way I want them, the way I expect them to be. He quickly said to me, that’s your thing. I don’t bother with that. And he went right on. And you seem to have the same kind of thinking: you’re living and enjoying your life and not struggling with an idea of what ought to be. Did Danny play a part in that, or are you both just two peas in a pod?

Michael Funk: I think Danny played a type of role. Danny’s got the type of personality if you’re going to be really close to him, you have to love yourself to be comfortable around him. And when you get someone in your life that’s really important to you. You want to make sure you keep interacting with them. So, if there’s a part of me, that’s uncomfortable being around Danny, I’m going to be unhappy because I’m going to make sure I’m around Danny. So that was a challenge to me to make sure that I knew who I am. I know what I really want to do. I believe in it, and I can practice it because Danny’s going to challenge me if I’m doing something stupid. I used to drink and party all the time. And Danny would call me on that. It was just not like he would nag me about it, but it was upfront, he knew what was going on, and we would talk about it. So, I had to know what I was doing and start thinking about what I was doing. A difficult relationship but the most rewarding type. I had to be happy with myself to really enjoy Danny and my relationship perfectly. So, he pushed me to a certain position in my life where I had to make expectations of myself that were real and not just these secondary entertaining myself with these types of things. I had to love myself to enjoy our relationship.

He met a girl 2018

Health Hats: Oh, man. That just makes me want to cry. Love myself. I remember when Mike was diagnosed with melanoma, we saw this ugly thing on his neck. We, I, knew it was bad. He had surgery to have it removed; some nodes came out, and a year of Interferon chemotherapy. Those were hard years for him. He felt like crap all the time. He was pretty freaked out. We were pretty freaked out after that, after the chemotherapy. Some time passed, and he pulled his life together after that, deciding to go to school, went to Geneseo in upstate NY, met a girl, and he was in love. It was wonderful. Then one day I got a call, ‘I’m numb on my right side.’ I thought, ‘Oh man, this isn’t good.’ Sure enough, he had a brain tumor, had surgery, and then he had a lung tumor and had surgery, then more brain tumors. I’m proud of us as a family. We pulled together and supported him and supported each other and coordinated his care. We had weekly phone calls where we would share about what’s been going on for the week and what are our upcoming challenges? What tests are coming up and doctor’s appointments and who’s going to take them and how are Mike and Betsy they feeling?

Birthday wishes for the old guy 2002

Bob Doherty: What birthday wishes do you have for the old guy?

Michael Funk:  I want what for him what he already has.  Danny has everything. He loves his job. He loves his staff, has a great family. You don’t hear him complain. What do you do for somebody like that? What do you wish for someone who has everything? I wish for Danny tomorrow what he has today. He has the perfect existence right now. Yeah, he has some stresses, he deals with them and just keeps on going.

Spiritual health 2018

Health Hats: Oh, Mike, I just love you. This morning. I reached out to Bob Doherty, gave him a call to get his take on the experience he had interviewing Mike and being part of Mike’s illness and death. Bob was my boss, my colleague, and my friend. He did the video of Mike at my 50th birthday party.

Health Hats: Bob, what was your experience of Mike and his passing?

Bob Doherty: As the diagnosis for Mike became clear and abysmal, it became traumatic for everyone concerned, including Mike and his girlfriend. Danny was the caretaker, guiding Mike and providing him with some basic stabilizing parenting and love in a very inclusive and full way. Mike had moved into his home, took guidance from him, and improved his life in very critical ways. He moved away from any debilitating behaviors. He was a very free-spirited, energized guy with a bright mind. And now he always felt great confidence about his thinking and his life. So, it was marvelous. He was an ideal fellow. But Danny contributed to his functionality very basically, and Ann and his boys.  That was interesting. Shortly before he died, Danny had a 50th birthday, and I interviewed him on that birthday. Within weeks after that, I put together a little video, 30 minutes video, which the family treasured, I just reviewed it today. Now I’m approaching the anniversary of his death of many years, I was struck again by his philosophical wisdom for a person of his age and his condition, which is soon to die. It was clear that was the direction. He was enthusiastic about life. He was hopeful about the moment, appreciative of all around him. He had a view of the world that was an older man’s view, value. He didn’t mention property or money; he didn’t even mention sadness. He talked about connection, contribution, appreciation of his life as it is exactly. He valued connection with all around him, including his girlfriend. It was rather startling to hear that again from a young person so well-formed philosophically or grasping life and how we would all like to. I think we all struggle with life’s meaning and direction, and he has a meaning down, which was appreciating each other, without any overarching religious, philosophical commitment that was in any way jarring. He just understood and appreciated his own and other people’s lives. So I consider that value, the value of Danny van Leeuwen and Ann and what they bring to the world and shared.  Mike, by the way, was a wayward adolescent that arrived at Danny’s house. He said, I just liked the environment, so I never left. Danny was okay with that. Makes sense.  So, like a fairy tale, there is a young and vibrant, thinking, and a bright guy having gotten to a point in his life of satisfaction. I’m now 74 years old, and I’m getting closer to it, but I’m not quite where he was, which is greatly appreciate every day. It was wonderful to know him. And that was nice to experience that love is transferable. That’s special.

Lifetime warranty 2018

Health Hats:  So, some of the time, I think, Mike was just full of life. And some of the times, he just felt really miserable. He wrote a lot of poetry. Believe it or not, we had a lot of laughs. Some funny stuff happened. When we went to buy him a computer at Circuit City, this young salesperson wanted to sell them a lifetime warranty on the computer. Mike kept saying, ‘I don’t really want a lifetime warranty.’ The guy was young and determined. Mike finally said, I’ve got brain tumors, and I’m going to die in three months. I have no use for a lifetime warranty.’ Poor guy. The poor guy was mortified. We were hysterical. We appreciated that Mike was not the, ‘why me, oh my God, life is so unjust.’ He always felt, why not us? Why not him? Why not me? Why not? Whatever. I think it helped me when I got a diagnosis of Secondary Progressive Multiple Sclerosis. Mike and I both won a lottery we didn’t buy tickets for.

Now a word about our sponsor, ABRIDGE.

Use Abridge to record your doctor visit. Push the big pink button and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!”

Not personalizing death 2018

Health Hats: So your wife Marianne died not that long after Mike died. I’m wondering about -, I know they’re very different experiences, but death is death. For not being a member of my immediate family, you were as involved in the experience of him being sick and dying as anybody. I’ve always wondered about how or if that may have affected how you experienced Marianne’s death.

Bob Doherty: Wow. I need to think a little more about it, but I think the experiences are identical in that death is death. Death is so stunning and final. My wife died from an aneurysm and it took 18 hours from the beginning of the event to her loss of life. It was quick, bang, tremendous instant change. But they were the same in that the ultimate result of grief and loss is an appreciation of what you experienced and being alive and connected to that person. And, in summary, is gratitude. And I have accomplished that with my wife, and with Mike. I, I was able to fortunate to never personalize the experience. Her death was her death. I didn’t wrap myself in cloth and ashes and feel sorry for myself. I was traumatized. I had to learn to live my life in an entirely different way. But somehow, I never felt resentful. And I watched Danny go through this process. He reached out for counseling help as Mike was sick and sicker. And I did the same within four days of her death. I was asking EAP for a referral to grief counseling, and I went to a group setting grief counseling. But throughout my experience, as heartbreaking as it was, and it was extremely heartbreaking, I never felt Danny shaking his fist at the sky or the gods or the world. And I didn’t either. So, there was a commonality there. We both didn’t personalize the loss as some injustice; we accepted life as it was going on. And we came very quickly to appreciate the power of the person that we love. So, there was that commonality. I also, I had an initial feeling on my right side. How can people just say driving around and shopping? Don’t they know that the world stops, I felt that with Danny. I remember one day, shortly before Mike died, there he was just trying to do the best he could in all areas. And he told me he was sorry about not being as attentive at work as he had been. I think we were out in the hall, or there was a bench there, and we sat down. It was outside the hospital, and Danny cried. It was appropriate to cry and, we sat there, and he cried a little. I might’ve joined him with a little quiet tear. There were just two men together coping with life as life was taking us. And I remember Mike’s funeral, a particularly sad event because he was so fricking young and vital. But his contribution to life can be seen on that video. It’s remarkable that a young man, particularly a guy with some rejection and his family of origin, managed to accomplish at this young age. So that’s how it was. We’re appropriately sad at the moment. We didn’t blame the world for a tragic life. We managed the way we best could. Our best was pretty damn good. I don’t think there’s much more to be said about it.

Health Hats: This morning, I talked to Ann, my wife, thinking that now I have this mission of empowering people as they travel together towards best health. And I realized that health is physical, mental, and spiritual and that while Mike was dying, he got stronger and stronger spiritually. And that was fascinating to watch. Really, he got stronger mentally first because he wasn’t so strong mentally before he was sick. But then, in his last year, that philosophical, he got centered. That made a difference for all of us.

Bob Doherty:  I think his accomplishments philosophically or spiritually were stunning. They were stunning. And I think it fulfilled both the true course of life, so what’s important. Still, I also believe from your Jewish intellectual tradition, and he was the exemplar, the star, the person who understands and produces within that understanding of communication to the world to those immediate to him,  but the whole world. I think he represents your life’s direction, Danny.  Just as you and I shared the quality of good services and rational management, we tried to manage in a humane way and didn’t ask people to do more than they should have or asked them to do the best they could. And that’s what Mike did. And that’s what you did from the moment you met him. And with my wife, my second wife, we were married about 22 years I never had any regrets. And your relationship with Mike, as far as I know, have no regrets. It was welcoming and on the positive side of human connection and growth.

Health Hats: Oh, man. Yeah. What to say?

Bob Doherty: You’re crying again?  We know how to live!

Health Hats: Yeah. I wouldn’t have given this up for anything. It was wonderful. The whole thing was wonderful. Painful. Wonderful.

Bob Doherty: Yes. Life is wonderful. It’s got some rough edges that’s for sure. Yeah. But for those of us that try to walk the earth and make it a little better. We know how to live.

Health Hats: Buddy, thank you so much.

Bob Doherty: Oh, you’re more than welcome.

Health Hats:  I love you.

Bob Doherty: I love you too, my friend.

Leave me a sign 2018

Health Hats: Mike was a gift. I have to tell you one more story, a great story. Mike and I talked a lot about dying and what was it like, was there an afterlife? What would happen? He didn’t think there would be one, but he sure wondered. So, one day we’re sitting there, and I say, ‘Mike, this is totally weird, but if after you die, you could leave me a sign. Oh, my God, that would just be fabulous.’ So, it was about, I don’t know, three months after he died. Probably a little longer. He died in November. This was probably in the spring, and we were doing this work on our front stoop. The stoop was a big block of cement that had tilted. And so my wife was redoing the cement and building it up so that it was level. I was her cement mixer, and she was the stone worker. When she got done, I cleaned everything up and washed everything down and took a fresh piece of plastic out of a bag, and covered the wet cement so it could cure overnight. In the morning, I took the plastic off the cement, and there was Mike’s guitar pick sitting on top of the cement. I don’t know what it means. What really happened? But it was cool. God, it was cool. I still have that pick. Oh goodness. All right, Mike, this one’s for you.

Reflection 2020

Danny helped me love myself. I had to love myself to have a good relationship with him. That’s the most glorious thing anyone has ever said about me. Let’s celebrate gratefulness right now, together. Connection in a pandemic: priceless. Onward.