242: What if you woke up and couldn't move?
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This Is Actually Happening features real experiences that often include traumatic events. Please consult the show notes for specific content warnings on each episode and for more information about support services. I was so used to being adaptive, resilient, always seeing the horizon ahead. The complexity for me in that hospital is that there wasn't a horizon. I was so stuck in the now of nothing. From Wondery, I'm Witt Misseldein.

You're listening to This Is Actually Happening. Episode 242. What if you woke up and couldn't move?

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I come from a working-class Irish Catholic family in Chicago. There were five kids in my family. I was a middle child, two older sisters, two younger brothers. My father sold cattle at the Chicago stockyards, as did my grandfathers. So we didn't really come from a cultured family. It was a very insular family.

I had a very complex relationship, particularly with my father, who worked very hard, drank a lot, and I had a lot of anger when he was drinking. And I was the first son. And I think for my father to have an effeminate first son was really complex for him.

And we often got into verbal battles together, especially when he was drinking. And it was very, very complicated for my little self to deal with. And I think it's complicated for my father to deal with. Most everyone else was silent in this. And so when kind of a rages would happen and he would leave for a couple of days, suddenly it was my fault.

From an early age, I mean like five or six, my father and I would go at it. And it was very difficult because everyone else wanted just calm to prevail. It was in denial. They sort of separated me from my siblings as well because it was as if my six or eight-year-old self was to blame.

My father and I did share one thing that the other siblings didn't. He sold cattle at the Chicago Stockyard, so every weekend he had to go to surrounding farms and meet with the farmers. And I loved that. I loved having him talk to the farmers about their cattle or their corn. And I learned so much from my father during those times because I watched my father listen

He didn't start out asking them, "Would you give me your cattle to sell?" He sort of let the farmers feel heard, and then they trusted my father. I feel so grateful for that part of my relationship with my father because I was able to learn to listen to people and not be transactional. One day in the early 60s, we were visiting Milledgeville, Illinois, a small farm, and they raised cattle and they raised Shetland ponies.

And that day in the pouring rain, this little city boy watched a Shetland pony being born. It was miraculous for me to see. And she was red and white and her name was Raindrop. And for years afterwards, whenever my father was in that area, he would drop me off in the morning and I would run in the fields with this pony. I loved this pony. She was like my spirit animal as a kid.

My mom was also dealing with my father's anger, and she did it in a coping way of being quiet, taking care of the kids. She worked very hard. She was a housewife. There was always quiet support. When I was in middle school, my school took a class trip, and we saw the Alvin Ailey Dance Company.

And I sat there completely amazed. And I thought, whatever is on that stage, I want to be that. So that night at dinner, I made an announcement. And I said, you know what? I know what I want to be in the world. I'm going to be a modern dancer.

Amazingly, after dinner, my mother opened up the Yellow Pages and looked up modern dance. And that Saturday, she took her effeminate little son, drove downtown to a modern dance class. And it was the most amazing thing because there I was finding a way into my body and finding a gravitas that I didn't have. I wasn't very good at sports. I wasn't interested in sports.

But here I found a kind of otherness that spoke to me. I often played by myself. Sometimes when my sisters were around, I would take their dolls and I would go in the closet and play with the dolls. So I think early on, I realized that I was different. But there wasn't a name for it. There wasn't any way to understand it.

There's something other and you don't know what it could be. I remember in high school, I told one of my sisters, I thought I was gay. And she said, well, I don't know what that means exactly.

I continued studying modern dance through high school. And midway through college, I got to be a pretty good dancer. And I got a scholarship to the Harkness Ballet in New York. So again, to my parents' utter chagrin, it's like, okay, I'm going to move to New York and I'm going to leave college. And I bought a one-way ticket. I knew I was never going to go back to Chicago.

As I went off to New York to be a professional dancer, it was very complicated for my father. He's a working-class Irish guy who worked at the Chicago Stockyards. And to have his first son going off to be a ballet dancer was, you know, mind-blowing.

1973, when I was in New York, a lot was happening aesthetically. The whole postmodern movement was happening. So suddenly there was Philip Glass performing at the Whitney Museum. There was Meredith Monk. All that was happening, and I fell into that. It was like a different kind of world for me.

I also was in a play called Coming Out. And I'm told it was the first gay history play, but, you know, I don't know about first anything. But it was great fun to do. And in 1973, I turned 21 the day that the Queer Pride March that year ended up in Washington Square Park. We were introduced from the stage, and it was my 21st birthday.

And I looked out and there were like 10,000 people in Washington Square Park. Coming from where I was, this kind of isolated, effeminate little boy in Chicago, to finding this tribe of 10,000 was really such an empowering moment for me. Suddenly I found I wasn't alone. And I just sent my parents and my family the press notices of coming out, the New York Times getting a review,

At that moment, the door was open and I didn't really have a conversation with my parents until much later. But when I would talk to my mother on the phone, she said, well, just don't talk to your father about it. So for years, I existed in that way. My mom knew that I was gay before my father did. I remember having coffee with her and I said to her, you know, I think I met someone I really love.

So mom got up, went in the kitchen, made herself a pot of coffee. And she goes, that's just great. Tell me about him. She used him. She said, do you want to tell me about him? And do you love him? And I said, yes, I do. I think that was a pretty profound bridging for my mother.

I finished my degree in psychology at Hunter College in New York. I had still been dancing. And after that, I really thought, I don't think I'm going to dance anymore. And I became very interested in Eastern spirituality. So I began studying both Tibetan Buddhism, but also with a Zen Buddhist priest. So I went off to the Himalayan mountains.

It was an amazing time for me. I watched people from all over the world come to meet this Karmapa, one of the great religious leaders. I watched him heal people. Mostly I just sat there with him. I just had the honor of sitting with him. Just being, it opened up the next part of my life because I really felt like I wasn't going to be a dancer anymore. And a choreographer in the Buddhist community knew that I had toured as a dancer and she was looking for a tour manager.

And so I sort of became an arts administrator. Three years later, I transitioned and worked for the Trisha Brown Dance Company. In the mid-80s, I was at the Pew Foundation in Philadelphia, and I was the program officer for the arts. And our budget was $23 million a year just in the arts that I was responsible for.

And throughout my life, I did have occasional visits with my father, but it was still very difficult for him to understand what I was doing, who I was in the world. My dad came to visit and he came to my office. He's looking around and he said, "Is this your boss's office?" I said, "No, Dad, this is my office." He said, "I don't think I understand what you do." I think he was proud, but I think his mind was a little blown.

A few years after that, I was in Minneapolis at the Walker Arts Center, and he came to visit me in the late 80s. And we were sitting on the porch, and I was talking about someone, my friends that were dying. And he said, I'm really sorry. He said, you know, at my age, I expect my friends to die. And that's right. He said, it's just not right that so many of your, and he tried to say homosexual. He couldn't say the word.

So he went, so many of your friends are dying. And I appreciated that for my father. It was a long time coming. Last time I saw him, really, my one sister had said that he was very ill. She said, you know, I don't think he has much longer to live. And so if there's anything you want to say, I think you should come. And I was like, oh, I don't know.

My sister said, well, you go home and try to resolve some things or you'll be doing it at the wake. So it's your choice. So it was 1993. I had not been home in a long time. And I did go. I remember my father met me at the door and he said, why have you come? I said, well, I've heard you're dying. And I thought it would be good for us to have a chance to have some conversations.

So we had a weekend. I was only there a couple days, and we mostly watched television together, had conversations through and around the television. I'm glad I did it. He met me with generosity, and I tried to meet him with empathy.

1988, I became the curator of performing arts at the Walker Art Center in Minneapolis. And the Walker Art Center's mission is to be a multidisciplinary place for contemporary art expression. So it was my job to kind of bring into our community the most interesting, the most provocative, the freshest, the avant-garde. If you think back on 1988, the AIDS pandemic was annihilating the artist community in New York.

So many artists were sick. So many artists were dying. Many artists were making angry, fierce work, trying to find a way to focus their anger, also to find hope. Body fluids were feared, of course, in the early days of AIDS. So artists were doing stuff with body fluids to kind of make them sacred again, recontextualize them.

1988, I come and it's like, okay, this is the kind of work that is most potent, most powerful, most urgent. That became the focus point of what was called the culture wars in the 90s, where Senator Jesse Helms was opposed to National Endowment for the Arts money going to provocative artists.

Well, I was presenting most of them. So there it was, Jesse Helms on the floor of Congress yelling about me in the Walker Art Center. I was getting death threats from people. Donald Wildman from the American Family Association gave out my home address and phone number to his followers, of course, to raise money for his organization.

My mother, God bless her, she called me up and she goes, oh my God, John, what did you do now? And I said, oh, what do you mean, mom? And she said, Rush Limbaugh was talking about you on television last night. And Limbaugh had a cable TV show and it was quite inflammatory. And she said that buckets of blood were thrown at the audience and people ran for their lives.

I said to my mother, now, mom, that didn't happen. This is a really important artist. And really, who are you going to believe, your son or Rush Limbaugh? And my mom said, but John, it was on television.

For that summer, it spiraled. And I found this happening over and over and over again when there'd be these kind of firestorms that trigger people's irrational fear. And they wanted to stop this kind of work.

And so I think during this time, I also began writing more personal narratives. I began making some AIDS-related pieces. And so the artist in me was engaged to also find my own ways to memorialize, to find my own ways to find a path forward.

So it was at the end of that period that I asked for a sabbatical because I was worn out. I was distressed. I felt attacked. I was depleted. It was an internal period. It was a sabbatical for me to kind of grow and be internal and nurture.

I took a sabbatical and 27 years ago, this month, 1995, as I was driving by a coffee shop, my friend Rhonda was sitting outside. And I said, oh, Rhonda, do you mind if I join you for a second? She said, no, no, no, my friend Larry and I are going to go to the county fair. He was getting coffee for Rhonda and

Out comes this man, Larry, and it was like, "Wow, just wow!" And so I was just a ridiculous flirt. I was completely smitten. It was extraordinary. I was so happy and I loved him and he loved me. And in February of 1996, he moved back to live with me. It was just great.

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And the next, something goes wrong. But with ADT's 24-7 professional monitoring, you still feel safe. Because when every second counts, count on ADT. Visit ADT.com today. My husband and I were in bed and he was reading. And I'd gone off to sleep. And this is 1996 now. And it was as if an electric shock went through my body. And my body had a spasm.

So Larry wakes me up and he goes, oh, my God, oh, my God, I think you've just had a seizure or something. And I said, no, something happened, but I think I'm okay. I'm okay. We'll call the doctor and we'll talk tomorrow. Let me just go back to sleep. So we called the doctor and the doctor said, no, I don't think it was a seizure, but I think you should get an MRI just to see it.

So we scheduled an MRI, and Larry and I went in. And what the doctor discovered was that there was no residue of a seizure, but that very high up on my spine, there was a tumor that was inside my spinal cord that was blocking about 60% of the cord. So we met with a surgeon. He said, well, we cannot do a biopsy on this tumor because it's inside your cord.

But the more it blocks your spine, the more electrical disruption that will happen. And if it is cancerous, it will probably get like spiderly legs, break through the spine and strangle the spine. So the best solution really is not to wait and remove the tumor at C2 in the spine. And you'll be in the hospital three or four days and you'll have a sore neck for a month. So we scheduled the surgery.

By this point in my life, I had stopped dancing, but I had been a marathon runner, so I was very physically fit. And I remember the night before surgery, I just ran five miles because I was nervous, and I thought, well, this would be a good way to deal with some of the nerves. Once I agreed that I thought the surgery was the path forward, I wanted to know nothing else.

I wanted to just be under the framework that I'd be in the hospital for three or four days with a sore neck for a month, and then I'd be back at work and my life would continue as it was. They put the IV in that would then put me out, and they started rolling the stretcher as Larry was holding my hand. And I remember seeing the ceiling lights. I don't remember anything else.

Larry told me that, I think it was about six hours later, the surgeon came out and said, okay, I'm done. They're just cleaning him up and you'll be able to see him in a little bit. Everything was fine during the surgery. I don't expect any complications. He then waited like an hour or so. And then he went up to the nurses and said, the surgeon said I would be able to see John. Can I go see him? And the nurse said, oh my God, I guess we didn't tell you what happened. I'm so sorry. Come back.

The cage was still screwed into my skull. I was covered still in blood and iodine. He said I was screaming incoherently. I was like a caged, tortured animal. I woke up a day later. I had so many drugs in me, I was hallucinating. I couldn't talk. I couldn't comprehend what had happened. And was realizing that, like, I couldn't move anything. Nothing. Nothing.

I would be in this kind of chaotic state, having no connection to my body. And all I had was like my brain at this point. And I was on all of these drugs and stuff. Sometimes in those first mornings, I would look at the window and just think, is there any way I can just get to that window and smash my head against the glass and cut my throat?

It couldn't move anything, so it's really only stuck with that fantasy of liberation. As someone who had been a dancer, someone who had been a marathon runner, who led a fully embodied life, to be in the hospital quadriplegic, to have completely lost total control of your body, was incomprehensible.

Because it was so inconceivable to me that I was stuck in this body that could not move. I couldn't will any motion whatsoever. Those first weeks were so hard because I was so used to, as a dancer, learning something, making it better, changing it, fixing it, always being adaptive, resilient, and that in practice I was able to be better.

Same thing as a marathon runner. Did six marathons. Always fine-tuning and trying to improve and always seeing the horizon ahead. The complexity for me in that hospital is that there wasn't a horizon. I was so stuck in the now of nothing. During intensive care, you're in a lot of pain medication. And so it added to this sort of hallucinatory space.

As soon as you're transferred to the rehab wing, you're taken off the pain meds. Suddenly, there's a clarity in your brain. You're no longer in this hallucinatory cloud. But the reality is in very stark terms where you are completely paralyzed. And you're on a ward with people with spinal cord injuries, strokes, and brain injuries.

It was one thing for me to be by myself in this situation and feel completely caught. But then to be put with others dealing with similar and very different issues was totally emotionally catastrophic. I would be wheeled in there. And if I saw someone who was less able than I was, if that's possible,

I felt superior. And if there was someone more able than I was, I was just destroyed. And so I asked actually not to go into group situations because I just wanted to look at the wall. I didn't want to deal with any of this. I really didn't want to talk very much about it. One day, the doctors came up with their weekly rounds. It was a Monday. The previous night, Christopher Reeve, the actor who was quadriplegic, was being interviewed.

When the doctor said, how was your weekend, John? I said, well, you know, last night I watched Christopher Reeve being interviewed, and it's so tragic. And the doctor's kind of, as you can imagine, did sort of a double take and said, well, what was tragic about it? And I said, well, that he's quadriplegic. And I remember one of them said, well, John, what do you think you are? I said, well, I'm not like him.

And they said, well, John, we expect that it will not be permanent. You may be paraplegic, but currently, technically, you are quadriplegic. I think up until then, I hadn't had a name for this. I think at that moment, it was like, okay, now I have a new reality. It really was this incredible implosion, emotional implosion, that this isn't temporary, that now that I have to be awake and

for most of the day in this completely frozen body. It was like, I don't want to live this way. I also remember that I was rolled into a psychologist who worked there and said that I could come weekly while I was in the rehab hospital. So I was wheeled into her office and she started telling me how her arthritis hurt and she asked me what was on my mind.

I said, "Well, to be honest, could we talk about the return of sexual function after spinal cord injury?" And this psychologist, working in a rehab wing of a hospital, said to me, "I really don't know. I'm not gay." I said, "Well, I didn't ask you if you were gay. I asked you about the return of sexual function after spinal cord injury. Male, female, gay, straight, whatever.

And she said, I think the gay experience is not something. And I said, we're done. She says, oh, it's good to be angry. I said, oh, you're right, it's good to be angry. And I'm going to complain about you. You should not work here. And so I asked to have the orderly come. So I stopped going to my therapy sessions after that. Now, that incident, years later...

resulted in a book called Queer Crips Disabled Gay Men and Their Stories because I realized that people like her didn't have any reference points and it would be better if she was that homophobic. She could say to someone, well, here's a book for you and Larry and it might be useful. So that was a benefit years later. I didn't think of it as a benefit with her ignorance at the time. One evening, I was laying in bed

I realized I could twitch the second finger on my right hand ever so slightly. Larry was coming with some friends for like a picnic dinner that night. And I was so excited when they all came in. And I said, okay, I have something to show you. Larry was like, great, honey, where do we look? And I said, just look at my right hand.

I waved hello in my finger, and that was so seismic. I was able to have some control on my body two weeks into this spinal journey of mine. I was in the hospital for six weeks. That's all the insurance would do.

Within those weeks, I was able to move my right hand, which allowed me to figure out how to push myself up. And eventually, I was like a little salamander. I could figure out how to put a sweatshirt on and off, and my right arm became engaged. Instead of going to rehab, I wanted to go to the computer room because I could type with my hand, and I wanted to start writing some thoughts.

And it was amazing to spend about 22 hours thinking about what you wanted to write and then be able to go in the commuter room and spend about a half hour before it wasn't too hard. I did go in intensive physical therapy. The goal was there were six stairs in my home. So I had to figure out how to get out of the wheelchair, get on my butt and get up six stairs before I could really go home because there wasn't a ramp.

And it was so much fun to kind of figure out with my one arm how to get out of the chair, get to the floor, and then push on my butt and get up those stairs so I could go home.

We were scheduled to go home. They were very used to Larry and I by this point. And they gave us a videotape and they said, we apologize about this, but this is sort of a sex tape for people dealing with quadriplegia and paraplegia. And it's completely heterosexual. We apologize for that. We just offer this as a resource. So I was like, hey, okay, we'll watch a sex tape.

Well, this tape was so wrong on every single entry point. For instance, they had a sweet little candlelight dinner with the man in a wheelchair and his female partner, and they were having a glass of wine or two to settle and get in the mood. Well, most folks who are dealing with a lot of spasticity in their body and quadriplegia are on these kind of muscle relaxants, and you don't mix with alcohol.

And then after dinner, she rolls him into the bed. She picks him up out of the wheelchair like he's a rag doll, puts him down on the bed, and then lays down next to him and rolls him on top of her. So at the exit interview, I said, okay, you warned us about this tape, but don't ever use this again. Here's what's wrong about it. First, the mixing of the alcohol is not a good idea. And also, I've lost...

sensation in my general area. So why would the appropriate position be on top inserting or even receiving? There's no sensation and I don't have proprioception so I can't thrust. What you really need to do is build a tape about other areas of the body. Where can you feel? Touch there.

Have that be your emotional, sensual spot. Because it may not be in the traditional heteronormative manner. They agreed. They said they're going to throw the tape out. You know, looking back now, it's very profound that, you know, just months after we had met and moved in together and started building a home, there he was, my caregiver, with, you know, a first quadriplegic and then a paraplegic husband.

They told us in the hospital that, well, often couples, especially new couples, it's very difficult when there's a dramatic health issue that happens. And so they just wanted us to be aware of that and to be able to talk to each other about that. And I am so blessed because for 27 years, he's cared for me and I cared for him. And I still have a best friend.

In the hospital, you're protected because you're in a kind of cocoon. When in a wheelchair, I was sent home, I had a completely different relationship to the world. We loaded up, takes about 45 minutes to get in from the wheelchair into the car, drove me home. We went up the sidewalk, crawled up the six stairs and I get inside and I'm so happy.

I looked up and saw that our bedroom and our bathroom is on the second floor, and there's two flights of stairs. And I just started weeping. Larry said, well, why aren't you happy? We're home. And I said, how am I going to get upstairs? He said, well, let's count them. 18 going up. You know, you'll do six at a time, and we'll just wait. You know how to do six.

Prior to this time, I'd been a dancer. I'd been a marathon runner. I headed organizations. I was in the news a lot. And here I am completely debilitated, cannot go anywhere. We tried to go to a movie and I got stuck in the bathroom because the door was too heavy for me to open it up. So here I was completely pathetic after I had a lot of authority in the world.

Other things that would happen is that someone would say to Larry, how's he doing today? As if I wasn't there. So for me, suddenly I was invisible in the world and I was completely helpless. The relationship to the world completely changed through a disability lens.

As I became invisible, I also became very focused on trying to find some kind of normalcy for myself because I wanted to return to work, which seemed physically impossible. I was still going to outpatient therapy. Friends would come and help me. My mom and my sisters came, and I was appreciative, but I was also petulant because I didn't want to be codependent on people, but I needed them so much.

I remember one day in physical rehab where I said, you know, bring the mirrors over. I think I can learn to stand up visually. And they're like, what do you mean, John? And I said, well, just bring the mirrors over and put braces on my legs and let me stand up with a walker because I have no sensation in my legs. But I felt like, well, if I can't feel it, maybe I can see it.

And we're like, well, I don't know. We'll try it, sure. But, you know, the mirror's backwards. And I said, no, I know. I was a dancer. I learned the choreography, and then we had to rehearse it. And the way we rehearsed it is looking in the mirror to make sure you're doing it right and to improve it.

And so it was amazing, over a couple days I was able to stand with braces and full support. It wasn't like I was unaided. But I realized since I've lost location, proprioception, and I lost sensation to the ground, at least I could stand visually. And I thought, okay, this is what it means to stand.

From there, it transitioned into bring the parallel bars over in front of the mirror. And I used those and I looked in the mirror and I was able to drag my right foot a little bit. I couldn't do much with my left, but I just thought, OK, well, if I can get one foot to move, I'll get the other foot to move. And eventually I was able to do that.

To this day, I wear a brace on my left foot because my brain doesn't know where it is. But I was able to locate myself in space visually. And so I was able to walk again five steps. I do not have sensation anymore.

on the right side of my body but i do have location on the right side of my body my right leg is sort of the center of my body but i don't feel it so that the cane stabilizes me to the ground the left side of my body doesn't have proprioception which means location

So the other side, I don't feel stepping on the ground, but I know where the foot is. The left foot, I can feel it once it hits the ground, but I have to anchor it to the ground visually. And I wear a brace on there because often the foot would flip and I would sprain my ankle. And so I walk with a brace on that leg.

So I, of course, immediately wanted to leave the wheelchair behind me. I was like, well, no, no, you can't go from one to the other. You got to use both. But I didn't want to return to work in the wheelchair. I don't want to be invisible. And I did go back to work. Got a phone call from a headhunter saying the Yerba Buena Center for the Arts in San Francisco is looking for a new director. You've come highly recommended. Would you consider it?

This seems completely crazy. I'm learning how to walk again, but someone in San Francisco wants to hire me to be the director. But it was extraordinary. My surgery happened in May, and in November, Larry and I flew out to San Francisco, and I was the director of the Yerba Buena Center for the Arts for a great seven years.

Here was the amazing thing in hindsight, is that in Minneapolis, my community, myself, my friends were all mourning my body. In San Francisco, I came disabled. People didn't have the shared trauma with me. So it allowed me to leave some of that traumatic stress behind because now my job was to run this institution.

26 years ago, when I woke up paralyzed, I left that world of the temporarily abled and I was completely ignorant, completely oblivious to any of the issues around disability in the worlds I had inhabited. And suddenly, I was in a world that was completely oblivious to me and to the needs that I might have to participate in society.

So from that moment on, I had no choice, but I had to become a disability advocate. But I became a disability advocate out of ignorance because I didn't know anything. I had to learn with colleagues and we had to learn together. Suddenly it was central to my identity and it absolutely was clear that I had to change the institutions that I worked in to make society better.

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I went to a disability arts conference in Los Angeles, and it was kind of amazing to me to see that there was a hierarchy of disability and that people who use just chairs or people who use canes were seen as differently abled from each other.

This one comic who was quadriplegic rolled down and her comedy was okay. But all of a sudden she starts taking after Siegfried and Roy, these two guys in Las Vegas who had the white lions. And, you know, she was kind of talking about what outrageous fags they were. And everybody was laughing. And I thought, what's this? That even in a disability community, there's an other that we can laugh at. It really pissed me off.

But artists with disabilities were trying really hard to make work that wasn't about this inspiration porn, that aren't we great, aren't we special, aren't we fantastic, that we can be in a chair and get up there and do something. But they wanted to be taken seriously. But what was happening, the world wasn't taking people seriously as artists. They were being dismissed. And so when I came back,

is to really think about how myself as an artist, I wanted to be taken seriously as a filmmaker.

I also began making videos about disability issues. I did a piece called Crip Shots, performative portraits of six artists with disabilities. Larry and I did a piece called Holding On, and it was about the impact on couples when one person becomes disabled midlife, but it's also about the caregiving spouse or partner and the impact on their life because very little was done about that.

And so both running the Yerba Buena Center and then when I transitioned to the San Francisco Foundation, I became a disability advocate because I really had to understand how to really invite people in. But working with accommodations, most arts groups thought of them as architectural. We just put in a ramp, we just put in some access seats. But that was the ADA of 1990.

And now we're in the 21st century and it's like, what does accommodation mean? And it is not about these special interest groups. These accommodations benefit a few people. The accommodations make it easier for everybody. And that is something that I learned over and over and over again.

I think a good example would be when I was at the Flynn Center in Burlington, where I moved in 2010. We really were working on a lot of access programs.

Some families with kids on the spectrum, I've reached out to them and said, you know, I'd really like your families to come and enjoy the experience here at the Flynn Center. It's a 1,400-seat hall, so it's a large theater. And they said, well, it's a nightmare. It's just a nightmare for us. By the time we get there, the kids are all worked up. We're all worked up. And then everybody's telling us to be quiet around us. And it's not enjoyable, so it's not worth it for us. We started with family matinees.

The lights were going to be on in the theater, so it won't be scary. Nothing will change in the production itself, but we will allow people to have blankets if they want. If people want to watch them through their devices, that's okay. If you want to walk up and down the aisles, that's okay as well. You can wear headphones. You can have things you squeeze in your hand. We thought we were offering this for kids on the spectrum.

What we found is families love this for their toddlers, for the young kids, where the four and five-year-olds could be walking up and down the aisle. No one's telling them to be quiet. The artists also love the experience. They're used to silence or laughter or applause at the end. And suddenly there's a soundscape of engagement that they had to be comfortable with.

It didn't mean that the kids were not interested. It actually probably meant that the kids were really interested. What we found was that as we built accommodations for what we thought was going to be a special interest part of our community, it benefited everybody. I'm now 70 years old. I had wanted to be temporarily disabled, but that was not true. I am not temporarily disabled. I was temporarily abled.

I have lived with this disabled body for 26 years. So I've navigated the world using a cane or a walker and at times a wheelchair. And in that time, I've watched my elders lose a lot of physical relationships with the world. I watched my peers do the same. And so this concept of temporarily abled, it's true. Everyone is temporarily abled.

Because as one ages, there's going to be mobility issues. There's going to be hearing issues. There's going to be sight issues. There's going to be cognitive issues. The accommodations that we're making for people with disabilities actually benefits the wider community. Again, that lesson.

So I'm in San Francisco and I say to Larry, I want to go see Shetland ponies. I loved ponies as a kid and I found there was a little Shetland pony farm. So I called him up and I said, could we come down and meet your ponies? We're not going to buy one. We just want to come pet them. He said, sure, sure. So we went down there. Oh my God, I was in heaven. Petting the ponies, grooming them, having a great time.

They also were showing them in carts where they were pulling them in carts driving. And it's one person sits in the cart. And I said to Larry, I think I can do that. You don't need your legs. He's like, oh, no, this is completely crazy. That next week, I went back down there and they had a like a 30 year old pony named Marigold. Marigold taught me how to drive a cart.

So with this Shetland pony in this cart, I could run again in the world. I could dance again in the world. It was like for those moments, I wasn't disabled. So I'm training. I was having a blast while I was still running the Yerba Buena Center. And then one rainy May, the original farm, one of the mares gave birth to a red and white pony. And they knew the story about my raindrop. So they named the pony Raindrop.

This pony was the good part of my relationship with my father. And so that felt really great. I felt like I was reconnecting to a childhood love and a freedom I felt with this pony that there I was who didn't have a lot of community. I was running with this pony. I was part of this pony's herd. And now at midlife, I have a relationship with this pony named after my spirit animal.

Well, in 2010, I accepted the job to move to Burlington and we were gifted raindrop. So Larry and I and Pacific Raindrop traveled cross country to Burlington and she lives in a barn about five minutes away. And it became the most miraculous part of my day for all those reasons.

Four years ago, I left the Flynn. I retired and I began to think about what is my service? How can I give back? I've had a really blessed, incredible life, but it's really time to give back. So my legislator who served my district took me to lunch and she said, well, I actually have an idea for your retirement. And I said, oh, great. She said, I think you should run for the legislature. You'd be really great at it because of all the things you've done in your life.

The opportunity for me was to go into a new situation and be a beginner again. And I became a Vermont legislator. I served in the Vermont House of Representatives.

As much as I have accumulated knowledge and expertise in the cultural world, suddenly I was a freshman legislator. I was on the General Housing and Military Affairs Committee. So I was dealing with homelessness. I was dealing with recovery issues, workplace discrimination, wage issues, farmworker housing. It became incredibly rich for me to be this beginner again, this beginner's mind that Buddhists speak about.

Waking up disabled, that invisibility that I experienced and lived with and moved forward with really came full circle for me when I was visiting people in the homeless encampments in Burlington as a legislator. Because these are people who have fallen between the cracks in our society.

are dealing with generational trauma, poverty, are dealing with addiction, dealing with exploitation, dealing with mental illness. And society has made them invisible. And they were invisible to me. I was finding myself frightened to go visit the homeless encampment to understand as a legislator what things we could do. And it reminded me of that invisibility I felt

And I think that that is a gift, again, of disability. It's one of the many gifts is that I was able to think about, well, who is not seen here? And if this is my service to my community, who needs to be seen?

My work in the arts has been about the avant-garde. It's been about the marginalized artists. And my work in the legislature focused on the homeless, dealing with people in recovery and how we can build a better support of recovery and nurturance for people. In a way, it's the aesthetic framework of the EDGE.

My disability self had to challenge the existing norms within the legislature because legislatures in this country are exempt from ADA concerns. There are no workplace accommodations that are required for employees or legislators or the public even, which is mind-boggling if you think about it.

I served two terms, four years. I'm not running in for re-election. But one of the quietest things I did, which is going to be one of the most profound things, is I challenged the workplace accommodations for both the legislators and the public, and that we had to be ADA congruent.

We passed that in the Rules Committee and the full House passed it as well. So for the first time, the Vermont legislature, the Vermont state capitol will be accessible to representatives and senators and the public according to ADA standards. Up till then, we were not invited.

My career has brought me many different places, and now I'm having a blast. I'm writing articles, and I'm as fully thrilled and invested in those things. I'm planning to make another short film, my 17th film. But, you know, I wish that I could say that Disability Road was now a rainbow, and it's all glorious, and it's joy-filled. But there is this...

bifurcation of the reality of disability and the aspirations of embodiment in the world.

I think the issue that is the most burdensome is my continual denial from the very beginning when I was saying, oh, isn't that sad? Christopher Reeve of Quadriplegic. Somehow it's not integrated into my whole life, into my subconscious as well as my conscious being. And I wish somehow that I could lead a more integrated life.

One of the realities of living with a disability and ultimately a gift is that I had to slow down. At first, it was a frustration for me. And I have friends, Eiko and Koma, who were Butoh dancers, and they move very slowly in the world. And I remember Eiko saying to me once, well, I like walking with you because there's someone who moves more slowly than I do. And it reminds me to look.

So I took that as a gift in a way, to think about, okay, I used to fly around the world, would run marathons, would do anything I wanted to do physically, but this fully embodied life. Now I live a life in minutiae, and I want to make sure that minutiae opens up the world in a different way. I get to experience things differently.

The world suddenly became very big for me in its smallness. I was able to go, wow, look at how that tree is changing. I think that's one of the gifts of this is to slow down to be and to think about, okay, what is the fullness of now? I think that fullness of now is enlivened every day when I go out to the stable to see my little Shetland pony, my 400-pound daughter, as I call her, Ranger Up.

I get out of the car and she whinnies. She can smell me coming from the parking lot and to be welcomed with this kind of unbridled joy and anticipation. I served two terms in the Vermont House of Representatives. You know, there you're given a lot of standing and you're assumed you have a lot of gravitas and you're called the honorable and stuff.

What's grounding as you're at the barn and you're mucking out the poop or chopping up the ice out of the buckets along with everyone else when it's 10 below zero. Your standing is your relationship with your animal and the reality of that and the grounding of that. I have to be then fully present with that animal. She's not too interested about how my day had gone, the good things or the bad things. It's about who are you right now?

when I'm grooming her, when I'm working with her, exercising her. It has to be completely now. And it is so cool to see a bigger world again in this minutia. And in that smallness, the world becomes immense.

Today's episode featured John Kalacki. You can find out more about John by going to johnkalacki.com. That's J-O-H-N-K-I-L-L-A-C-K-Y dot com, with links to his book, Because Art, commentary, critique, and conversation, as well as links to some of his films. From Wondery, you're listening to This Is Actually Happening.

If you love what we do, please rate and review the show. You can subscribe on Apple Podcasts, Amazon Music, or on the Wondery app to listen ad-free and get access to the entire back catalog. In the episode notes, you'll find some links and offers from our sponsors. By supporting them, you help us bring you our show for free. I'm your host, Witt Misseldein. Today's episode was co-produced by me, with special thanks to the This Is Actually Happening team, including Ellen Westberg. The intro music features the song Illabi by Tipper.

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