Host: Meg Bowles
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Meg Bowles: [00:00:12] From PRX, this is The Moth Radio Hour. I'm Meg Bowles.
And in this show, we have stories of assumptions, missteps and misinterpretations, books judged by covers and other things that may not be exactly as they appear.
Our first story falls into the category of careful what you wish for. Sharon Zegen shared it at a GrandSLAM we produced in New York City, where WNYC is a media partner of The Moth. Here's Sharon.
[cheers and applause]
Sharon: [00:00:43] I was 33, and I really wanted a boyfriend. Everybody was in couples, or so it seemed. My friends were getting married, some were having kids. And I was dating. I was dating a lot, but I was tired of dating. I wanted to get to the living together, spend an evening in sweatpants in front of the TV, eat scrambled eggs for dinner, go to bed to sleep together without sleeping together. But I never made it that far. I felt inferior for not making it to the sweatpants stage.
So, when I met this guy who was really into me, I thought to myself, this time, I'm going to pull through. I'm going to work really hard to make it stick. And it started well. We were dating. We were dating a lot. Spending weekends together. Obvious Fridays. And at some point, it was clear. I had a boyfriend. What an accomplishment, success.
There were just a few hiccups. We had nothing in common. [audience laughing] I wasn't really attracted to him. [audience laughing] I basically wanted him gone. [audience laughing] So, I was living this battle between heart and mind for a few months until at some point I thought to myself, okay, enough. This is it. It's too much. I'm going to have the conversation with him. We're going to go up to this up north hiking this weekend. And on the way back, we'll talk. We'll look each other in the eyes, we'll hug it out and go our separate ways.
Okay. So, we're on this mountain hiking when a guy in an ATV stops next to us and asks, “Do you want to ride to the top of the hill to see the view?” And we say, “Sure.” And we jump on. We get to the top of the hill and it's beautiful. And then, he turns the wheel to take us off the hill and puck, the whole thing flips over. As I fall to the ground, I think to myself, this isn't too bad, puck. I hit the ground. My boyfriend falls on top of me, the driver on top of my boyfriend.
They get up and give me a hand, but I can't get up. There's pain shooting through my body from head to toe. And all I can say is, “Hospital.” So, my boyfriend takes me there, where I'm told that I broke my pelvis in five different places and my shoulder, and I need to be admitted to the hospital for six weeks for this to heal.
So, now, I'm living my life in the hospital. My mom, who hasn't seen me naked in 20 years, [audience laughter] comes in every day for the shower ritual when she kneels in front of me and helps me soak my feet. My friends have a shift lift, so there's people with me all the time. And my boyfriend, he's also there, almost every day. He comes in with something sweet to eat. He sits around and watches the crappy TV with me. He helps me pass the time. I mean, he's a really likable guy. I just don't like him. [audience laughter]
But I can't break up with him. What am I going to break up from? There's no boyfriend activity going on here. I'm helpless in a hospital bed. What am I going to say? I want to start seeing other patients? [audience laughter] So, you know, I just need to pull through. And also, I still have a boyfriend.
So, six weeks finally go by and he comes to help me go home. I'm in a wheelchair at this point. He drives me home and gets me in the apartment. I take a shower, helps me get into my PJs. I'm on the couch and I say to him, “Hey, it's Thursday night. Don't you always play soccer on Thursday night?” And he says, “No, it's your first night back home. I want to stay with you.” I'm like, “No, no, no. Go, go, go. Just go.” And he does.
I'm home, and I'm in privacy, and it's quiet bliss and I think tomorrow we'll have that final conversation when the phone rings. It's him. He says only seven words, “I'm in the hospital, come get me.” So, I call my friend, she puts me in a wheelchair. She drives me to the car. She puts me in the car. She takes me out of the car, she puts me in my wheelchair. She pushes me down the long corridor that leads to the emergency room and out comes my boyfriend in a wheelchair. [audience laughter]
He broke his leg playing soccer. It's going to take six weeks to heal. [audience laughter] Side note, this guy is disconnected from his family, has no close friends, lives in a four story walk up. I have no choice. I invite him to stay with me. [audience laughter]
So, now, we're living together. [audience laughter] We're spending every night in sweatpants in front of the TV. [audience laughter] We're having scrambled eggs for dinner. [audience laughter] We're going to bed to sleep together, but we're not sleeping together. [audience laughter] I'm living the dream and it feels like a nightmare. [audience laughter] But I can't break up with him. He was so good to me. He took care of me. What am I going to do? Throw him out to the street? So, I just need to pull through. But at this point, it's like I'm doing time, okay?
I finally moved from wheelchair to crutches, and I go back to my university classes and this cute guy I've been eyeing forever finally talks to me, but I can't see him. I have a boyfriend, right? This time period feels like forever. On the day that my boyfriend got his cast taken off from the hospital, he came home with Chinese food and he sat me down and said, “Listen, when I met you, I didn't really want a girlfriend, but I was so into you. The thing is that you wanted a boyfriend, but you're not into me.” We looked each other in the eyes, and we hugged it out and I felt relief sweep through my body.
But at the same time, I started crying and crying, because I realized I don't have a boyfriend anymore. [audience laughter] Only a couple of months later, when I finally started dating that cute guy from university, 14 years and counting. I realized that when it sticks, you just don't have to work that hard. Thank you.
[cheers and applause]
Meg Bowles: Sharon Zegen and her ex-boyfriend parted on friendly terms, and eventually lost touch. She said we shared a difficult period and helped each other through it. So, to me, that's important and special.
These days, Sharon is living in Tel Aviv with that cute guy she mentioned in the story, who is now her husband and they have two daughters. She says, their marriage is going strong and though he can sometimes drive her crazy, she never wants him gone and she feels very lucky to have found him.
Next up, we have a story from Bill Dempsey. He shared it at a StorySLAM we produced at the Housing Works in New York City, where WNYC is a Media Partner of the Month. Here's Bill.
[cheers and applause]
Bill Dempsey: [00:07:36] I didn't sign the card. It wasn't a conscious choice. I wasn't avoiding the card. I didn't know the card existed. It never made its way to my desk. Thus, I never signed the card. I didn't seek it out.
The reason the card was being sent around was in response to the email that came out on Monday. The email told us that one of the creative directors had lost her partner over the weekend unexpectedly. And the email also told us that there would be a wake on Thursday night.
Now, I didn't know enough to sign the card, but I did know enough that when an email comes out and tells you that there's a wake for the creative director's partner on Thursday night, you bring a sport coat to work, and you leave at a respectable time on Thursday and go and pay your respects, which is what I did.
When I showed up at the funeral home, I noticed a couple of my coworkers in the back, so I blended in with them. We sat down. One of my coworkers had never been to a Catholic wake. And so, we were discussing the etiquette of the whole situation. I don't know if any of you have not been to a Catholic wake, but the coffin was in the front of the room, open. You can either go open or closed. This was open.
So, our coworker that had never been there before responded with what I thought was the appropriate amount of horror/fascination [audience laughter] at the ritual that I had been accustomed to since I was about 10 years old, coming from a large Irish Catholic family. The line started forming. People form a line and go up and pay their respects. And so, we got in line. When I got up to the casket, I knelt and pretended to pray, because it seemed like the right thing to do.
I kept it short, but not dismissive. [audience laughter] After a few seconds, I crossed myself, and stood up and shifted off to my left, which is where the bereaved were standing. And then, you wait in the line again to say how sorry you are about the passing of this person you've never met before, which I was happy to do.
It was at this point that I noticed that the creative director was flanked one side by her assistant, someone I knew slightly better. See, the creative director and I, we did not know each other very well. At this point in my career in about 150-person group, you could say probably 50 of those people were my superiors. I didn't interact with them on a daily basis very often. My direct report I did interact with, but other than that, it was like a series of faces and names and like, “Could that person fire me? Can this person--” I don't know. [audience laughter]
Her assistant, however, I had a few personal email exchanges with and had seen her out to drink a few times. And so, there was a familiar face, which I would later find out. It would have been much better had she been a worse employee and did not attend the wake of her boss's partner.
It comes my turn. I walk up to the creative director, and I extend my hand along with my condolences and immediately, I'm shocked to be engulfed in this deep, emotional hug. I hug her back, because that's what you do. I'm just chalking it up to the emotion of the week and the day, and what this woman must be going through. And so, I hug her back.
The hug ends, and I pull back and she looks me directly in the eye. Her eyes are rimmed with tears, and she says, “It means so much that you came.” And I say, “Of course, I wouldn't not come.” And she says, “And I need you to know what you wrote in the card was so beautiful and meant so much to me over these past couple days.” [audience laughter] The card I did not sign.
Immediately, I have two options open to me, both of them horrible. [audience laughter] First, I can say, “No, no, you're wrong. You've made a horrible mistake. I'm not who you think I am, nor did I sign your card.” [audience laughter] The second option, while also slightly repellent to me personally, felt like the more merciful way to handle the situation, which is how, as this woman was thanking me for something that helped her through this moment of grief, I became a sympathy card plagiarist. [audience laughter] I didn't want to, but I had to.
And so, I said, “It was nothing. Please don't mention it.” I tried to move left to get away, and let the other people come and say they were sorry. But as I move to someone who I've never met before and who I'll never see again, to say I'm sorry about this dead person who I've never met before and I'll never see again, I hear the creative director lean in to her assistant and whisper, “Who is that?” And her assistant whispers back, “That's Bill Dempsey.” He works on the nineth floor analysis group.
And immediately I'm back in front of her. She grabs my arm and she's apologizing to me. “I'm so sorry, Bill. I thought you were someone else. It's been such a long week.” And I say, “Please don't apologize to me. I can't imagine the week you've been through. I can't imagine what's going on. If anyone deserves a pass for mistaking a coworker for someone else tonight, it's you. Please don't give it a second thought.” [audience laughter] And that's when she looks at me and says, “You didn't sign the card.” [audience laughter] Thank you.
[cheers and applause]
Meg Bowles: Bill Dempsey eventually moved into a new position in his company and ended up working with that grieving creative director on a few projects. But they never mentioned the events at the wake again.
Bill is now an associate creative director with the same company, a popular streaming service where he manages a team of producers who make trailers and promos for TV shows. He's a father of two. When he's not playing guitar and writing music, he's helping out at Little League in an unofficial capacity as the first dad off the bench.
I asked Bill, if looking back, he would have done anything differently? And he said, “I still think I made the right decision in the moment. Supporting someone who is grieving, taking credit for thoughts you would have put into a card had you known of its existence is less wrong than pointing out that they've mistaken you for someone else. 9 out of 10 cases, I probably would have shuffled down the line and she would have forgotten. But I just happened to be the 10th case.”
Coming up, all signs point to romance, or do they, when the Moth Radio Hour continues.
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Jay: [00:14:43] The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts. And presented by PRX.
Meg Bowles: [00:14:56] This is the Moth Radio Hour from PRX. I'm Meg Bowles.
Part of the thrill of blooming romance is the uncertainty. Will they, won't they? Do they, don't they? It's often full of mixed signals that keep you guessing. Sometimes it goes terribly wrong, and sometimes it's the beginning of a sweet love story.
Our next storyteller, Isamula Elika Malesi, shared her story at a main stage we produced in Nairobi, Kenya. Here's Malesi, live at The Moth.
[cheers and applause]
Malesi: [00:15:27] I was six years old when my dad called me to the living room and said, “Daughter, as you're growing up, I want you to always remember these three rules. Number one, do not have sex until you get married. Number two, do not be in a relationship with a man until you finish your undergraduate. And number three, which I'm really, really emphasizing, do not allow a man to waste your time. Have you heard me?” I said, “Yes, dad. I hear you.”
I walked away, not so sure if I had understood everything that my dad told me. I held on to these rules. My life basically revolved around school, church, home. School, church, home. In primary school, my girlfriends wondered, is there a problem with Malesi? They tried to hook me up with boys or with a boy, and I said no. At some point, I used to run away after lessons.
After I finished my high school, I got good grades that enabled me to secure a position at the University of Nairobi to study political science and public administration. One time, in my third year, I decided to go and apply for my passport. I walked into the building, took my ticket and I sat down waiting for my turn. Where I was seated, it was right opposite the entrance, this good looking, elegantly dressed man walked in. He took his ticket and sat in the same row where I was sitting.
He tried to get my attention, but I did not bother. He then came closer and tried to say, hi. was busy scrolling through my phone. He then went ahead and told me, “Hi, girl. My name is so and I don't have any problem. I just want to know you.” I gave him a cold answer, “Hi.” He then said, “Why are you here?” I told him, “I'm here to apply for my passport.” He also told me that he was there to apply to renew his passport.
Later on, after the conversation went on and he insisted on just knowing me. We ended up exchanging contacts. And his voice was so soft, and he listened to me and he just wanted to know more about me. Later on in the evening, he gave me a call. The first time, I did not pick. The second time, I did not pick. The third time, I decided, let me pick and see what he has to say. [audience laughter]
Softly, in a gentle voice, he said, “It was a pleasure meeting you during the day. You were so kind to me, and I would like to know more about you. Is it okay if you can plan to meet the following day in the morning, so that I can just get to know much more about you?” I hesitated, but I said, “It's okay, we can meet.”
The following day when we met, I realized we were dressed in the same way. He was in a khaki trouser and a striped shirt. I was also dressed the same way. And he mentioned, “Indeed, marriage are made in heaven.” [audience laughter] I smiled. I didn't say anything. He requested, “If it's okay, we pass by the supermarket and pick an item.” The item was a calendar planner for the mom, for the grandma who was diabetic.
He needed to remind the grandma to be taking the medicine at a certain time and she marks the calendar. I did not hesitate. We took the calendar planner, went to the place where were supposed to pay. And even before the QR code was scanned, he said that digit from his memory. Then I said in a joking way, “Our children will be so brilliant. [audience laughter]
We walked out, went to the restaurant. He requested me to order for anything that I needed, he will pay for it. I had taken heavy breakfast that morning, so I was not that hungry. I ordered for just a cheap thing. We continued talking. Our conversation revolved around the position of women in the society, how to survive in business, as he was dealing with importing electronic goods from China. He showed me photos of his business, the milestones that he had made. And he was just telling me how he had all the money that he needed and what he was missing in his life was a beautiful woman like me. [audience laughter]
At that point, my heart began to melt a bit. I think I was starting to be attracted to him. In the midst of us talking, he looked at his watch and he gave me a sign like something was amiss. He said he needed to remind his grandma to take medicine, because she was diabetic. He took his phone from the pocket and he told me, “Oh, I'm sorry, my phone is off and I can't make this call.” I said, “How can I help you?” Then he told me in a bit embarrassing way, “Is it okay you just help me with your phone, so that I can make the call?” I did not hesitate because I wasn't-- That is the only help I could offer. He had an iPhone and I had an android.
I handed over my phone to him. He dialed the number, said, “Hello, grandma,” and then he gave me a sign, “Give me a minute, I am coming back.” [audience laughter] The restaurant we were in was a bit noisy. So, I concluded he has walked out, because he's not able to hear the sickly voice of his grandma. [audience laughter] I saw him making the call somewhere at the exit of the restaurant, and I was so sure that he's coming back.
After a while, he walked out and that is how I saw him. Thereafter, I waited. Five minutes turned into 30 minutes. One hour, one and a half hours, two hours, three hours. [audience laughter] The man did not show up. [audience laughter] I screamed as loud as my voice could allow me. I felt so silly and embarrassed in that restaurant. The waiter came and told me, “Madam, you have to pay the bills.” [audience laughter] I asked him, “Aren't you concerned about my feelings?” [audience laughter]
I requested, “Please help me with your phone. I want to confirm something.” [audience laughter] I dialed my number and it was off. That's when the reality hit me, my phone was gone. I walked out, went into the bathrooms, looked myself into the mirror. My eyes were full of tears. I knew I had broken my dad's rules. I knew I had disappointed him. I was so much embarrassed about myself.
Later on, I decided I'm going to report the matter to the police. And after I'd given the description, I was told the man was in the list of the most wanted criminals in Nairobi. The day after I met with my friends, I told them everything that had happened. They were so sorry for me, and they told me, “You know what Malesi? It's okay. We are sorry about that. But you wouldn't have known what it means to go out for a date if you never gave him a chance. Now, you know.” Thank you.
[cheers and applause]
Meg Bowles: That was Isamula Elika Malesi. She's a master's degree student at Kenyatta University pursuing Gender and Development Studies. After that incident, Malesi said she took her sweet time before going on another date. And when she did, she was very cautious and always looking for red flags. Eventually, Malesi found love, and is now married, and a parent herself and is preparing to pass down her own advice.
Malesi participated in The Moth Global Community Workshops and The Moth Masterclass Program and use storytelling as a tool in her workplace to enable girls and young women to speak out. She believes that through stories, people from different corners of the world connect and become one community. You can find out more about Malesi and The Moth Global Program on our website, themoth.org.
Next up, another story about love. But this time, about the things that are left unsaid. Mike Wang shared it at a GrandSLAM we produced in San Francisco. Live from the Castro Theater, here's Mike Wang.
[cheers and applause]
Mike Wang: [00:26:14] My Sunday mornings often began in one way, me unloading a full dishwasher, the remnants of the dinner party that I would host the night before. My love language is cooking elaborate meals, and then pretending that I did not spend 13 hours for it with the people I care about. I'm the son of two Chinese immigrants. This is how we love.
This Sunday morning was a little different. I get a phone call from my dad. I look at my phone. It's on WeChat, and I'm reminded he's in Shanghai seeing my extended family. I answer, “Hey, baba.” Hey Dad. Liang chi le ma?” Liang is my name in Chinese, and chi le ma means, have you eaten? You see, in Chinese culture, rather than greeting someone with hello or good morning or how are you, you say, “chi le ma, have you eaten?” When you care about somebody in our culture, you want to make sure that they've eaten enough.
I reply, “I just had a little coffee, dad. How about you?” And he says, “Liang, I have something to tell you. Your grandfather has passed away. The funeral is in two days.” My heart sinks. What do you say to your father when he has just lost his own father? “Are you okay? I'm sorry. I love you, dad. I'm here for you.” Those are not the words that I said. I have never said I love you to my dad, and my dad has never said I love you to me. I don't imagine my grandfather, his father, had ever said I love you to him either. And now, he would never hear it.
That does not mean that I did not grow up in a family filled with love. I did. I love yous were just expressed through different ways. The I love yous I felt were through 07:00 AM mornings where my parents both would be up giving me a warm breakfast and then driving me an hour into New York, so I could go to school. We lived in New Jersey. The I love yous I felt were fresh cut fruit that they left outside my room at midnight while I was still studying. The I love yous that I felt were measured in the hours that pork belly was braised and the number of chive shrimp dumplings they made, love between the lines.
I replied to my dad, “Dad, what can I do? How can I help?” And my dad replied, “There's nothing that you need to do. Everything is taken care of here. You don't need to come to Shanghai to the funeral. Focus on your work. Your career is most important right now. We'll be okay. Don't worry.”
Normally, I would have said yes and obey. In Chinese culture, respecting your elders is one of our core values. But I paused. What if what my dad wanted was not what he needed? I heard myself say, “No, dad, I'm going to go to Shanghai. I'm going to buy a ticket right after this call. I want to be there. I need to be there.” And to my surprise, he said, “Okay.” I even think I heard a little relief in his voice.
Next day, I fly to Shanghai. I get to my grandparent’s house, knock on the door. My dad opens the door. What do you do when you see your dad for the first time since he's lost his father? Do you handshake? Do you wave? Do you hug? Before I can do anything, my dad takes a step forward, and grabs my two bags and takes it to my room. [audience laughter] I walk in, I say hello to my uncle. He says, “Chi le ma.” Before I can say anything, he hands me his two marbled tea eggs. Those are his specialty. I start eating them.
I walk over to my mom, my aunt and my grandma. They're all sitting down, folding silver paper into ingots. Ingots are a Chinese coin that are shaped like dumplings. And the ritual is the more ingots that you fold, the idea is that you burn it or you bury it in the coffin, that's what the deceased, my grandfather, would have in the afterlife. We must have folded a thousand ingots in silence that night.
The next day was the funeral. My dad gave the eulogy. He cried. I was asked at the end to go up with my two uncles and my dad to nail the four corners of the coffin shut before it was sent for cremation. I was sad, but really glad I could be there to support my family.
The next day, I had to go back to San Francisco. My flight was at 07:00 AM, and my parents insisted on taking me to the airport. We're at the gate, and we begin our traditional goodbyes. I hug
my mom and then my mom nudges me and says, “Go hug your dad.” I pause, freeze and then I take a step forward. And my dad says something. He sticks out his hand and says, “No, we handshake. [audience laughter] We handshake. Goodbye.”
I walk to the gate. Right as I'm about to go to the security check, right before I'm out of earshot, I hear him say, “Liang, fēijī shàng chī diǎn dōngxī.” Liang, make sure you go eat something on the plane. [audience laughter] “I will, dad.” “Dad, make sure you eat something too.” Thank you. Thanks, San Francisco.
[cheers and applause]
Meg Bowles: Mike Wang lives in Oakland, California with his wife and dog like cat, Ender. He says, “His six-word bio would be Banker Turned Educator, Chinese Parents Confused.”
When Mike and his wife were married in an Indian-Chinese wedding, he said that they tried to integrate their different cultures and rituals into the three-day wedding ceremony. One aspect of this was celebrating the idea that there's no one right way to show love. He set a goal at the wedding to hug his father and verbally say I love you for the first time, and he was successful. The hug was given during the Hindu ceremony, and the I love you was spoken at the Chinese wedding ceremony.
I called Mike, and while we were talking, I asked him about the perfect meal he would prepare to say I love you.
Mike: I think I would just make fried rice. It's a really simple and humble dish, but when made with love, you can really, really taste it. The fluffiness of the egg, the toasty and al denteness of the rice. Everyone knows that to make really good fried rice you need to use day old rice. So, you'll know that I've been thinking about you at least one day in advance.
When eating this rice, you can taste the caramelization of the garlic and shallots and also all the little surprises you can add like Chinese sausage, shrimp, even a little bit of extra scallion or fried scallion. Just things like that would just create a little magic to this fried rice. I would top it with a little bit of my secret chili crisp, which I call boom sauce, just because love needs a little bit of spice.
Meg Bowles: You can see Pictures of Mike Wong and his family sharing the love at his recent wedding on our website, themoth.org.
Coming up, assumptions are made and proven wrong, when The Moth Radio Hour continues.
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Jay: [00:34:44] The Moth Radio Hour is produced by Atlantic Public Media and Woods Hole, Massachusetts. And presented by PRX.
Meg Bowles: [00:34:57] This is the Moth Radio Hour from PRX. I'm Meg Bowles.
And our final story in this hour comes from Richard Westcott. We first met Richard when he called The Moth Pitch Line and left a two-minute pitch. I called him back, and not so long after, he took the stage to share his story live at a main stage we produced at St. Ann's and the Holy Trinity Church in Brooklyn, New York. Here's Richard Westcott.
[cheers and applause]
Richard: [00:35:25] When I was 35 years old, I was invited to a party. When I got there, I found that all the carpets had been rolled up, and there was a stereo playing different music in every room. Everybody was swing dancing. Everybody was beautiful, laughing, smiling and having so much fun. The energy was through the roof and I thought I have got to be a part of this. So, I started taking dance lessons. And I loved it.
Through the years, dancing became my identity. I went out dancing three, four, sometimes seven nights a week, swing, rumba, foxtrot, Argentine tango. For me, the highest calling is when you can become one with your partner. Yes, you're dancing with a physical body, but you can become one with the soul of that person.
One Saturday night, I went to a dance hosted by a professional dance couple. I arranged to meet a friend there. And at one point, I asked Miriam, the studio owner, to dance. I knew she was a fabulous dancer. She didn't know me from anybody. [audience laughter] So, we started dancing. And she's dancing like a dance instructor. But soon she encounters the resistance of my lead.
At that moment, she knew this was going to be different, and she trusted me and she allowed herself to feel and express the music. And at one point, I led a spiraling eight count figure and we became one. After the dance, I went back to my friend at the edge of the dance floor and I said, “Okay, that's it. It doesn't get any better than that. It is time for me to go home.” [audience laughter]
Four years ago, in September, I started having issues with my vision. Minor things at first, but soon a pattern emerged where the vision in one or the other eye would deteriorate through the course of the day, becoming worse in the evening. Then the next morning, everything would be fine again. I consulted doctors, but no one could figure out what was wrong with me.
Just four weeks later, I was at my office where I worked as a civil engineer for a large design firm. And I thought, today, I should leave a little early. It was the first game of the ALCS, the Red Sox were playing the Astros. And my commute took me right by Fenway Park.
Now, I had been having issues with my eyes that day, and I thought I should drive, I should call an Uber. But one of the things with the problem with the vision is it also affected my judgment. And a little voice on my shoulder said, “Nah, you'll be fine.” It was dark, it was raining and the traffic was stop and go.
And by this point, my vision had deteriorated to tunnel vision in both eyes. I had a light-colored car in front of me and I used that as my guide. After a harrowing exit office stereo drive and a few other very stressful maneuvers, I was able to find a parking space and I pulled over to wait for my vision to get better. It didn't. So, I walked home.
I went to bed that night fully expecting my vision to be fine the next morning. But it wasn't fine. When I awoke, I couldn't tell what time it was. I knew the date. I knew it was October 14th, but was it day or was it still night? I fumbled around and found my cell phone, but I couldn't do anything with it because I couldn't see its face. I sat on the couch, defeated. I thought I could die right here in this couch. I imagined I would be found next spring, just a pile of dust and bones holding a cell phone in my skeletal lap. [audience laughter] The darkness was profound.
But eventually, through the help of some neighbors, I was able to call the one phone number I knew by heart, my ex-wife. [audience laughter] She called my sister. And with her help, I was able to make my way to Mass Eye and Ear. There, the ophthalmologist did his exam and he said, “I'm going to tell you it the way I would want to hear it if it were me. What you have is giant cell arteritis, referred to as GCA. You are totally blind. This kind of blindness is permanent. There is no cure. There is no chance of recovery.”
I was stunned. At that moment, my earth stopped turning and I was left trapped on the dark side. GCA is an autoimmune disease that comes on for no apparent reason. It clogs off the blood flow to the eyes and the optic nerves. It always attacks the eyes first, but it doesn't stop there. You lose your hearing, you lose your sense of smell, your sense of taste, then it goes after your vital organs until it gets to your heart.
They started me in an IV of steroids to reduce the inflammation in an attempt to stop the progress of the disease. I had a couple of days of not really knowing where I was. I felt trapped inside my own skull, and it was terrifying. I remember thinking, this must be what it feels like to die.
One day, my nurse announced that I had visitors. I was not prepared for the crowd that streamed in. I had my circle of friends from ballroom dancing, another circle from swing dancing, Argentine tango dancers, co-workers, relatives. introductions are being made all around. I was in a fine mood, but nevertheless, I realized that in a very real sense, my life had ended and this was my wake.
Now, these people knew how I used to be. But lying there in that hospital bed clearly, I was different. Most of these people knew me as a dancer. But there would be no more dancing for me. No more taking my children out for boat rides. No more ambling strolls along the waterside. Certainly, no more driving. I was grounded.
Eventually, I was well enough to leave the hospital and fortunately, my sister and her husband took me in, which was good, because my body had to go through a complete rebound. But by Thanksgiving, the progress of the disease was stabilized and I was able to enroll in a program that I fondly refer to as blind college. The hope was that I would be able to learn to live independently and return to work. There, they taught me how to use a cane and many other things.
I discovered I had great difficulty relating to other people while being blind. I had great difficulty entering into conversations because I couldn't see anyone and I couldn't tell when I might speak to somebody without interrupting them. I had my ups and downs along the way, but I did graduate from blind college and was able to live independently and return to work in a new capacity in my field of engineering.
One afternoon in my new apartment, I was organizing the closet, and a rumba came on the radio and I couldn't resist the rhythm. So, I put both my hands on the doorframe to keep my balance, and I moved to the music. Often, I would visualize beautiful dancing doing delicious, sensual figures. I would recall the freedom of movement. I could feel it. But that afternoon, with my hands on the doorframe, I realized I just couldn't do it.
One night, some friends walked me down Circuit Ave to the Ritz. Johnny Hoy and the Bluefish were playing, and I thought maybe, maybe, maybe this is what it would take. A friend asked me to get up and dance, but I was very stiff and I kept stumbling backwards. I was all body and no soul. And I thought, OMG, it's true. I'll never dance again.
In so many measurable ways, my life had ended. Dealing with the loss of vision was difficult, but not being able to dance felt like being wrapped in heavy, rusty chains. I kept holding onto this fantasy that my vision would come back one day if I just willed it hard enough. Because of the nature of the disease, early on, I would have occasional flashes of actual vision that would last for a second or so.
My vision was flirting with me, and it left me with the almost cruel belief that my vision was going to come back one day, not because any doctor even hinted at that, but because I could not accept what had happened. This past summer, I was on the vineyard with some friends, and we went out to eat at a restaurant and I heard someone say, “There's Johnny Hoy.” They're coming in and setting up their equipment.
The music began to play, and my best friend's wife, Bronwyn, who is an excellent dancer, grabs my hand and says, “Come on.” If it had been anybody else, I might have said no. I knew the space was small, and I was sure I would lose my balance and stumble backwards. But it was Bronwyn. When we got on the floor, I instantly knew this was going to be different. I trusted her, and I found that I could feel and express the music. I never thought I would feel that way again. And we kept dancing.
And at one point, the song ended, and Bronwyn looped her arm through mine and repositioned us a bit on the floor and I heard someone say, “Oh, my God, he's blind”. People had no idea. If you had asked me just the day before, “Would you ever dance again?” I would have said no. But that evening, dancing with Bronwyn, I realized the music of my soul had been set free. My rusty chains had fallen off.
I still wish nearly every moment of every day that I had my vision back, but I'm adjusting. Whether I'm having wonderful daydreams or terribly depressing thoughts, I just enjoy a wallow in them. And then, at some point, I say, “Okay, that's enough. Time to get back to what you were doing.” And sometimes, [sobs] sometimes I just dance.
[cheers and applause]
Meg Bowles: Richard Westcott is a civil engineer and has lived his entire life in the Boston area until recently, when he ventured as far west as Worcester, Mass, where he now lives with his daughter. His favorite dance continues to be the Argentine tango, where you and your partner are wrapped in each other's arms and focused on nothing but moving to the music.
His second favorite is the rumba, which he says is difficult to do wonderfully, but unlike Argentine tango, is quite easy to do badly. And Richard says he has many fond memories of dancing to Johnny Hoy and the Bluefish, and listening to their CD on road trips with his children.
While the flashes of vision Richard described have abated, his light sensitivity has greatly improved and he's now able to tell the difference between night and day. He says, “He realizes now it's perfectly fine for him to hold two completely opposing thoughts simultaneously,” that his vision will never come back, which he believes, and that his vision will come back one day, which occasionally makes him feel good to believe.
That's it for this episode of The Moth Radio Hour. We hope you'll join us again next time.
[overture music]
Jay: [00:49:38] This episode of The Moth Radio Hour was produced by me, Jay Allison, Catherine Burns and Meg Bowles, who also hosted the show and directed the stories. Co-producer is Viki Merrick. Associate producer, Emily Couch. Additional GrandSLAM coaching by Jennifer Hixson and Chloe Salmon.
The rest of The Moth's leadership team includes Sarah Haberman, Sarah Austin Jenness, Kate Tellers, Jennifer Birmingham, Marina Klutse, Lee Ann Gullie, Suzzane Rust, Brandon Grant, Sarah Jane Johnson and Aldi Kaza. Moth stories are true, as remembered and affirmed by the storytellers.
Our theme music is by the Drift. Other music in this hour from the Drift and Haruomi Hosono, Ernest Ranglin, Kokoroko, Jiebing Chen and V.M. Bhatt, Horacio Rivera, Manuel Galban and Johnny Hoy and The Bluefish. We receive funding from the National Endowment for the Arts. The Moth Global Community Program is generously supported by the Bill & Melinda Gates Foundation.
The Moth Radio Hour is produced by Atlantic Public Media in Woods Hole, Massachusetts. And presented by PRX. For more about our podcast, for information on pitching us your own story and everything else, go to our website, themoth.org.