Audacious with Chion Wolf: Transcript for 'Lynda Bluestein, medical aid in dying, and the importance of humor every day'

Audacious with Chion Wolf
Return to episode page >>

Correction: A previous version of this episode incorrectly reported the town where Bluestein died. It was Concord, Vermont. Not Brattleboro. The episode has been updated.

Chion Wolf  00:02

From Connecticut Public Radio in Hartford, this is Audacious. I'm Chion Wolf. The way we die is rarely up to us. But some people who are terminally ill wish it was. Back in May of 2022, we first met Lynda Shannon Bluestein. She was in palliative care after being treated for terminal ovarian and fallopian tube cancer. She was a guest on our show about medical aid and dying or MAID. Only 10 states, plus the District of Columbia, allow people to end their lives this way. And there are very specific criteria for people who are eligible, including having a terminal illness with a prognosis of six months or less to live and being capable of making their own healthcare decisions. In Connecticut, MAID isn't legal. Frustrated by the lack of legislative movement here, Lynda successfully sued Vermont so that out-of-state residents could take advantage of its law. In 2023, Vermont became the first state to remove the residency requirement. So on January 3 2024, Lynda and her family left their home in Bridgeport and settled into a home in Concord. The next day, surrounded by loved ones, she took the cocktail of drugs that would end her life, and at 9:15 am, Lynda died peacefully. Today, you'll listen back to my conversation with her from 2022. And then you'll hear more of her story as she began a wind phone project where old rotary phones are installed in public places for people to use to feel as though they're connecting with loved ones who have died. And you'll hear remembrances from Lynda's husband, Paul, and her son Jacob. When we first connected, Lynda told me what it felt like when she got her terminal diagnosis.

Lynda Shannon Bluestein  01:50

It was like I was standing at a time clock back. In the days when I worked at JC Penney's, I took my timecard, and I punched out and I said, "I'm off the clock. From now on, everything is just my bonus days."

Chion Wolf  02:06

Tell me about how you started considering medical aid in dying.

Lynda Shannon Bluestein  02:11

First, my mother's death in my arms, just days after she had completed yet a second course of chemotherapy. She couldn't have weighed more than 79, 80 pounds, wearing an adult diaper, curled up in the fetal position in a too large hospital bed, unable to participate. And having a hospitalized medicalized death where, you know, I don't want to be on my third round of chemo where I'm looking as bad and feeling as awful. I want quality of life. And I wanted medical aid in dying. And I made a list of the things about what would be a good death for me. And it's called 'My death plan'. And every day, I get up and I read this list. And all I do is glance at it to see if I've done everything that I want to do. At the top of the list is: Forgive everyone. I don't want to carry around anything with me that in the end matters not at all. So I thought yeah, that was stupid for me to still hang on to that thing about this. In the end, it matters not at all. So sometimes I will look and I say, "Oh, I haven't forgiven so-and-so. They probably don't even know I'm carrying this, but I'm gonna do that." And then, of course, what everyone tells you as you get older is "Get your affairs in order", you know, wills, trust, financial stuff. Well, you know, that's pretty ordinary and, and then number three is: Plan a good death. It's going to be at home. It's going to be with my dog, with my husband, and with my kids, maybe my grandchildren. I don't want death to be a mystery to them. Because it's everybody's end. And this isn't a secret, something that we should be ashamed of. It's something we should celebrate as as much as a birth. And we plan for births, and we plan for weddings, and we plan for all these other things. But how about planning for our final exit? And so I have some things in mind for my good death and where it's going to take place. And I'd like it to take place at my beautiful home here in St. Mary's By The Sea. But if I have to move to Vermont to access medical aid in dying, that's going to mean a big seismic shift in my plans. I wanted to, I went to a conference at the Fairfield Library on Death Decluttering and I thought, "oh, how apathetic! Here I am, dying, and I can learn how to declutter.” So I'm not quite done Marie Kondo-ing my life, but…

Chion Wolf  04:49

I see quite a few books in the background there.

Lynda Shannon Bluestein  04:51

Yeah, I need to - don't even look at the file cabinets with all that paper that could be put away, but you know, we do hang on to stuff. And then, by the 10th item on my good death list, it's just carpe diem. Every day that I have, if I'm feeling strong and I have the energy, you know, get up, you know, get dressed, put on makeup, you know. I have hair now, I didn't have hair for so long, and and do things that bring me satisfaction or a sense of completion or a sense of agency, because my cancers aren't giving me a lot of agency over many aspects of life. But certainly taking steps to make sure that at the very end, I don't have to suffer and have my family members suffer. My cancer is already caused seismic shifts in the people who love me. They have to realize, you know, mom, grandma, wife, not going to be here as long as we had hoped, or expected she would. I want to make that as light on their hearts as possible. When the cancer comes back and when the suffering is too great.

Chion Wolf  06:12

How? How will you know when the suffering is too great?

Lynda Shannon Bluestein  06:19

I guess I don't know. Isn't that one of the mysteries? In States where medical aid in dying is legal, most people who access the cocktail for ending their life end up never taking advantage of it. So, but if all I can do is wake up in the morning and dread another day, if I'm where my father was, please don't let me wake up. Or I've had the privilege of being a friend to a woman I met in a cancer support group at the Dermaframe Cancer Center three years ago, who, as she said, "took flight" on February 2 of this year, which she, by herself, moved to Vermont, leaving her husband back in Fairfield, drove to Vermont and registered her car there, got a place to live, established, residency, registered to vote, had all of her medical records sent, had to find new doctors, new hospice care, be admitted to hospice, and she wrote me every day. She wrote me on the days before she had decided to go to Vermont to access Act 39. And she said, "Lynda, I'm going to keep you in a loop because I'm gonna go through this, and I'm gonna leave you a trail of breadcrumbs. So you'll know how hard it was." And it was very hard

Chion Wolf  07:42

To do also while being sick.

Lynda Shannon Bluestein  07:45

Well, in her third year of suffering from lung cancer, with no energy left, so Cathy had to leave her home and do all these things. And she wrote me every day. She said, "Well, I had to find a witness today, to attest to the fact that they weren't related to me, didn't know me, but I seem to be sound of mind and know what I was doing. And they weren't going to benefit from my will." And she said the people in Vermont didn't want to sign it. They were afraid, you know, "Oh, somebody's gonna find me." So she finally found a random person in a coffee shop who would sign it, it'd be a witness. And then she went to a bookstore. And she walked into the bookstore and broke down in tears because she was so tired and so frustrated. And the bookstore owner just put her arms around her and said, "What's the matter?" "Would you be my witness?", and they sat down and talked. So that was her second witness, but this was not easy. And then she had to find a place to live, somebody to take care of her. And she had to find that, oh, only one pharmacy in all of Vermont compounds and dispenses these drugs. So she said, "Lynda, this ain't easy. So start early." I took that seriously. And and I was so happy when she wrote me in the morning of February 2. She said, "Hey, girlfriend, I'm taking flight this morning. My family's here. My son, my daughter, my husband. Bill has been taking care of her, she had moved into his home. He was a hospice nurse. And so she said, "Goodbye." So, I saw what a good death was. And I went to Cathy's memorial service, as many people did in Fairfield at the Penfield Pavilion. And I heard her son and her daughter, both adults, and her husband talk about how beautiful it was and how wonderful it was to see Cathy just say, "I'm gonna go to sleep, and I'm not going to wake up, and that's all I wanted." So when I get to the point where the suffering is so great that I say to my husband, or I say to someone who's near me, "I just don't want to wake up again. Please let me go to sleep and not wake up." That's the time when I will access those medications to make sure that happens.

Chion Wolf  10:08

I'm curious to know what you think about the idea of what medical aid in dying may do to the human species on a grand scale. Of course, we have no idea if this becomes something that more and more people do. When you take the pain out of this human experience on that grand scale, what avoiding that kind of suffering will do to us, you know what I mean? Like, what in what ways that may change us culturally in that broader context? What do you think when I put that to you?

Lynda Shannon Bluestein  10:47

I think it's wacko bananas. It's a personal choice. If you like suffering, go for it. You know, I have had two children. And believe me, I don't think I was deprived of any great experience because I had an epidural. My gosh, if that's gonna be the central point in my life, am I going to be damned forever? Because I didn't suffer an extra like 10 hours. If people want to suffer, go for it. If I don't choose that as my path, what matters it to you and what societal consequences? Dead is dead, folks. You know, if it comes after a long period of suffering, is that better? What kind of value system is so crazy that we're saying you owe society more hours of suffering? Is it seven hours? Would that be enough? Or does it have to be 24 hours, or maybe, maybe a whole week of suffering, would be good for society? The fact is, when I die, if I die as I wish, here in my home, who's going to be affected by this? What is the State of Connecticut going to gain or lose, I'm dying anyhow, by the hours that I have chosen to remove? Because it was the right time for me. I will be the only one to know. My husband can't say, "Here, take this cocktail." It's my choice. If I wanted to end my life, and I don't. Let's make a real clear distinction that I think is most important. This is not suicide. This isn't physician-assisted suicide, which I hate, a term that I despise. If I wanted to end my life, I could buy a gun tomorrow, right, no, no, this afternoon, right? It is the United States, so I could probably find one. There are a number of ways that I could commit suicide. People who commit suicide don't want to go on living. I have a lot to live for. And I want to live it fully until I'm no longer able to participate in it. When my agency has been removed because of my cancer, then that's on me to make that decision. And I highly resent the religious arguments that suffering is part of, you know, helping you get to heaven. Well, I think that ship sailed a long time ago. And it doesn't matter what faith you practice, what political party you belong to, any of those other things. This is one's most intimate, personal, and final decision they can make about their own lives. And to have someone else say, "Oh, no, that's, we're taking that away from you." I cannot tolerate that. And I will do whatever it takes, even if I have to leave the state and my home and where I'm comfortable and where I want to be, to make that happen. My death will come, my death will come. Maybe when I choose to take the medications for medical aid in dying or may come because my cancer will get the better of me and I'll be okay up until the end. I don't have the answers. But you don't either. And you shouldn't have a right to have an answer for me. I really don't care what anybody else thinks. I only care what my family thinks. What my two adult children, I have a 46-year-old daughter and a 44-year-old son. And they, they understand that mom is right now she's doing good, and when that no longer is possible, she's going to go out the way mom wants to go out. They've known me for a long time. And don't dare argue with me.

Chion Wolf  15:01

That was Lynda Shannon Bluestein. We recorded this conversation in May of 2022. When we get back:

Lynda Shannon Bluestein  15:08

Is there life after death? My question to you: Is their life after birth? And what kind of a life has there been?

Chion Wolf  15:18

Plus, the wind phone project,

Rev. Deborah Rundlett  15:20

It is a means by which to have the conversations you didn't get to have and to know that the wind will carry them to the source that needs to receive them.

Chion Wolf  15:30

And remembrances from her son and husband. I'm Chion Wolf, this is Audacious, stay with me. This is Audacious. I'm Chion Wolf. Today we're remembering Lynda Shannon Bluestein. After becoming terminally ill with cancer, she traveled with her family from her home in Bridgeport, Connecticut, to Concord, Vermont, where she died on January 4, 2024. She used the state's 10-year-old medical aid in dying law after successfully suing the state to permanently drop its residency requirement. Later, you'll hear reflections from her husband, Paul, and her son, Jacob. But now, let's get back to my conversation with Lynda from May of 2022. Do you believe in an afterlife?

Lynda Shannon Bluestein  16:33

Hmm. Yeah, I think I'm going to be part of the soil that's going to be recreated, you know, when I have my green burial ahead, and I become good worm food. And yes, life will go on. And I'll never be truly gone until the last person who's there to remember me or has read something I've written is gone. So I will continue on because of how I have impacted both in personal ways, individually, and in the writing that I do in other things that I've done. I live on. Is there life after death? My question to you: Is there life after birth? And what kind of a life has there been? When there's a good life after birth, that's the religious question to me.

Chion Wolf  17:37

I've asked everything I planned on, amazingly, because I feel like I could talk to you for hours. Is there anything I haven't asked you that you want to make sure you put on the table?

Lynda Shannon Bluestein  17:47

I can't emphasize enough that I don't want this for everybody. I want access to everyone for those who choose to have this as an option. In the same way that I choose to keep a bottle of morphine in my safe here at home that was prescribed for me when I had my big surgery. I didn't need it at the time. But I said, when I need that, it's a comfort to know I have pain relief. Am I going to drink it tomorrow? Maybe, maybe not. I don't know. But it's a comfort. And so is medical aid in dying, having the full range of care that physicians can offer and that includes extending my life operating on me, giving me drugs. It also includes allowing me to say when I've had enough, I can go to sleep and not wake up. When it gets to that point for me, why should I live another day? For me, it's not a religious question. It's a moral question of doing the right thing by those who love me and by loving myself. That's the moral issue.

Chion Wolf  19:02

Well, Lynda Bluestein, thank you so much for talking with me.

Lynda Shannon Bluestein  19:06

Chion, thank you also for inviting me to your program.

Chion Wolf  19:16

On top of living with terminal cancer and her medical aid in dying activism, Lynda and her son Jacob began an initiative to install wind phones across Connecticut. Connecticut Public's Deputy Director of Storytelling, Meg Dalton, recorded this piece back in early October of 2023.

Meg Dalton  19:34

An old cream-colored rotary phone sits in a grove of trees just outside a historic church. A crowd surrounds the phone and Kate Bagnati steps toward it, picks up the receiver and dials a number.

Kate Bagnati  19:48

Hey Mama, I miss you. I know you're around. This is a pretty cool way to talk. Bagnati's mom, Grace, died about a year ago. The phone she's using isn't connected to a telephone line. It's called a wind phone. Rev. Deborah Rundlett is the pastor of Ridgebury Congregational Church in Ridgefield. Her church's wind phone is the first in Fairfield County and one of three in Connecticut.

Rev. Deborah Rundlett  20:24

It is a means by which to have the conversations you didn't get to have the good, the bad, the ugly, and know that the wind will carry them to the source that needs to receive them.

Meg Dalton  20:36

Ridgefield's wind phone is attached to a wooden post with a little roof at the end of a gravel path. There's a bench next to it and a plaque above it. Lynda Shannon Bluestein reads the inscription.

Lynda Shannon Bluestein  20:47

This phone will never ring. It's connected by love to nowhere and everywhere. It's for those who have an empty place in their heart left by a loved one. Say hello. Say goodbye. Talk of the past, the present, the future. The wind phone will carry your message.

Meg Dalton  21:04

Bluestein and her son, Jacob Shannon, are the brains behind the Ridgefield wind phone. They approached Rev. Rundlett about bringing the phone to her church. Bluestein has terminal cancer and is in hospice care. Earlier this year, she made national headlines after successfully suing the state of Vermont to drop its residency requirement for medical aid in dying. She wants the wind phone to be a space for normalizing grief.

Lynda Shannon Bluestein  21:28

I don't think that when my body dies, that's the end of me. I think there's so much more. And I want them to know that we're still connected by love. And I saw having a wind phone here is a place where my family and friends could go and keep me alive.

Meg Dalton  21:49

More than 150 wind phones have popped up across the country in recent years. That's according to mywindphone.com a website that locates and lists wind phones. Amy Dawson created the website a year and a half ago to honor her daughter Emily, who died in 2020.

Amy Dawson  22:05

Grief gets swept under the carpet. People get three bereavement days if they lose their spouse or their, you know, their family member, their child, like are you kidding? And then you're supposed to move on, and you don't move on, you move forward.

Meg Dalton  22:17

Dawson was inspired by the first-ever wind phone, Bluestein was, too. That phone was created in 2010, more than 6000 miles away in Ōtsuchi, Japan. Bluestein says a garden designer, Itaru Sasaki, was mourning the loss of his cousin.

Lynda Shannon Bluestein  22:32

He got an old phone and he built a little, in his garden, he built a little phone booth and he would dial up his cousin and say, "Oh, this is doing well this year. The kale is wonderful and, and just, and he said it really helped him.

Meg Dalton  22:46

A year later, an earthquake and tsunami devastated the region. Sasaki opened his wind phone to the public and it became a place of solace for 1000s of visitors. That's what Bluestein hopes to do here in Connecticut. In her dining room, she has a collection of rotary phones and different colors, all waiting for a home.

Lynda Shannon Bluestein  23:05

I don't have a lot of time left, but I have a lot of ideas about where I would like wind phones to be around Fairfield County.

Meg Dalton  23:14

Bluestein thinks of these wind phones as her legacy, something tangible her friends, family, and even strangers can use to stay connected to those they've lost. Meg Dalton, Connecticut Public Radio.

Chion Wolf  23:31

Between when the story aired and her death on January 4, Lynda was able to install more wind phones around the state. We'll have a link to her project at ctpublic.org/audacious. Five days after Lynda died in Concord, I connected with her husband, Dr. Paul Bluestein, and her son, Jacob Shannon. From the limited time I spent getting to know Lynda, it was very clear to me that she was probably the same Lynda no matter who she was speaking to. But I asked Jacob: What was she like, as his mom?

Jacob Shannon  24:07

Her, you know, either consciously, or let's admit it was consciously, training me for leadership, and not just to be a leader. But it's something that I do with my own children and it's something that's that was vitally important to her and that's helping other people as a leader, you know, incorporating her compassion, her vision for the future, and to, you know, my life lessons every day.

Chion Wolf  24:38

Paul, what about you as her husband? Maybe you saw a little different side of her than the rest of us. What did we miss?

Dr. Paul Bluestein  24:46

As you say, Lynda was the same person consistently. Lynda didn't change the things that she said or the way she behaved, depending on who the audience was. And there, there wasn't much that she held in private other than her love of practical jokes to play on me.

Chion Wolf  25:10

Okay, can you give me an example, please? What did she do?

Dr. Paul Bluestein  25:13

The one that I liked best because it really got me. We got out, and I was driving the car. And when we got home, I got out of the car, and I locked the doors with the key fob and started to walk away. And I heard the doors unlock. And I thought, "Well, that's peculiar." And I locked them again with the key fob. And a second later, they unlocked again, and I said, "Lynda, there's something wrong with the car. I have to, I think I have to take it in, there must be something wrong with the electrical system. And she said, "What do you think it is?" I said, "Look, I lock the door," and I locked the door. I said, "Watch," and the door lock opened again. "See," and then she held up her key fob, which she'd hidden behind her back, unlocked the doors. And she said, "Oh, it must be this!"

Chion Wolf  26:10

So not only did you have a beautiful wife, you had a playmate.

Dr. Paul Bluestein  26:14

I did. Lynda, Lynda had made a promise to me 40 years ago that she would make me laugh every day, regardless of how bad things got at least once a day. And you know what? She kept that promise, literally, up until and including the day that she passed.

Chion Wolf  26:40

I would like to hear about when, when she knew it was time to go up to Vermont.

Dr. Paul Bluestein  26:47

She knew that the progress of her disease was going to be not a slow downhill descent. But one where she was going to be well and pretty well, and pretty well and pretty well and then go over the cliff, what she called Niagara Falls. And she knew that, that her deterioration would come unexpectedly and then progress pretty rapidly. And it did. When that started to happen, I think that she realized that time was running out for her, and the window of opportunity to go to Vermont and to have the kind of death that she wanted to have, that kind of agency, was closing. And I think that she reached the point where she hadn't been able to tolerate solid food for two months. And she now could barely walk because she had so much edema in her legs. And her GI tract wasn't really working well. She was having a lot of trouble breathing because her abdomen was so swollen. And I think that she realized both that the window was closing, and also that she was losing all of the independence that she valued so much, and I think just decided she didn't want to go on. And one of the things she said very commonly in that last month was, "From the shoulders up, I'm perfectly well." And she was. She said, "If only I could unzip my body which is trying to kill me and step out of it, everything would be fine."

Chion Wolf  28:37

What was it like leaving your home in Bridgeport for her? What was it like for her?

Dr. Paul Bluestein  28:46

I think that she really regretted having to do that. It would have been her preference to stay here. The idea of having to be as sick as she was and complicate her last days with, with driving all the way to Vermont to a house that was strange to her. Not surrounded by all the things that she knew and loved was not abhorrent to her. But a regret that she had. It's shameful that Connecticut has passed no law that allows someone to stay here and access medical aid in dying and literally forces them to go to another state. That's just shameful. If anybody thinks that going to another state, I had thought that when the lawsuit against Vermont had succeeded, I thought now everything was going to get easier. It didn't. If anybody thinks that, that this now becomes an easy thing to accomplish, they're going to be badly mistaken. It took all the effort that Jacob could make, and that I could make and that Linda could make to have this happen.

Chion Wolf  30:14

That was Linda's husband, Paul Bluestein and her son, Jacob Shannon. After the break, Jacob and Paul on using the wind phone to talk with Linda after her death for the first time,

Dr. Paul Bluestein  30:26

It actually works. There's something about it. I mean, I felt better talking to her. There's something weird about this. There's something that's alive.

Chion Wolf  30:38

I'm Chion Wolf. This is Audacious. Be right back. This is Audacious. I'm Chion Wolf. After Vermont dropped its residency requirement for medical aid in dying, it wasn't clear yet when it would be the right time for Lynda Shannon Bluestein to make the trip. She and her family had connected with a Vermont resident named Bill, who for years now has dedicated his life to helping people in the process of medical aid in dying. They secured a temporary home in Concord, where they met with Bill. I connected with Lynda's son, Jacob Shannon, and her husband, Paul Bluestein, five days after Lynda's death to hear their reflections. How do you put words to what it was like in her final days? What was it like?

Dr. Paul Bluestein  31:36

The drive, she was very weak and not, not well. She, we had to stop several times on the way for her to throw up, primarily because of the motion of the car. Again, just cruel. I was angry at the state of Connecticut, for making her go through this. The experience altogether, once we were there and got her out of the car and got her into bed, was like a weight being lifted from everyone's shoulders. The anxiety about could we get there, and would we have a place to go, and would Lynda be able to tolerate the medication, all faded away. And next morning, we got up around 6:30, Bill came into the room. Lynda sat up in bed, bright eyes, strong voice and said, "Well, Bill, what's the plan for today?" He said, "Well, your children and grandchildren, who are staying in a hotel, are going to come and you can spend time and say goodbye to them. At 10 o'clock, you said you wanted to take your pre-medication and then you know we have to wait a half an hour, at least until you take your cocktail. And we'll do that at 10:30." And he said, "And then we'll just wait until you're gone." And he said, "But you have to understand you're, you're at the, the controls of the plane now. You can take off whenever you would like, sooner, later, today, tomorrow, you choose. And she, she looked him right in the eye, popped her fist in the air like that and said, "Now!"

Chion Wolf  33:34

How did you react to that?

Dr. Paul Bluestein  33:36

I reacted the same way he did, except he said it first. He said, "Now?" Me too, I said, "Like now?!" And she said, "Which word didn't you understand because there was only one of them." And he said "Well, your children aren't here yet. Shouldn't we at least wait?" And she said, "Duh!". And so Amy and Jacob and the grandchildren arrived and she spent some time with them. And then Bill said, "I'm going to give her her pre-medication now. And I think that all of you except Paul should leave." He said, "There's going to be a half an hour between the pre-medication and the cocktail," he said. "Lynda will be drowsy and resting but not unconscious. She'll be able to talk, and I think the two of them need that half hour just together in private alone." And everyone went and gathered in his living room and the snow started to fall. Within a minute or two after she took her pre-medication and we could look out the window and it was like a postcard of New England. And we just talked about how good a life we had had together. And then, Lynda got tired, and I just held her hand, and she watched the snow come down, me, too. And I don't think that we had the need to say a great deal. And a half hour went by. And it was, it was lovely. Not a hospital, not surrounded by nurses and doctors, no beeping machines, it was just quiet, peaceful. And Lynda was so relaxed, and then Bill came back in and said it was time to give her a cocktail. And when she took it, everyone could come back in. And he said that I needed, he needed my help to just set her up. And she had to take the cocktail by herself. I can't give it to her. He couldn't give it to her. She had to take this on her own. So he mixed it up. And as he was mixing it, the last thing she said to me was, "I'm so happy that I don't have to do this anymore." And she took the cocktail, and everybody came back, and within three minutes, she was unconscious. No pain, no struggle. And 25 minutes later, she was gone.

Chion Wolf  37:26

Thank you. Jacob. I'd like to hear what this was like for you.

Jacob Shannon  37:36

The important piece to me began in May of 22 with your interview with mom. She pretty in detail described what she wanted her death to look like. It was a little frustrating that driving in Denver, Colorado and listening to this on the news, I didn't get a little heads up about what my children and I were about to listen to on NPR, but it was very touching. To me, it was, I was happy and I was grateful because we knew what she wanted. Getting a clear map. And understanding what someone wants is always the best way to get it to them. A big part of this for me is being the father of twin teenagers with developmental delays. I was trying to be present in the moment, not with just my mom, but with my children and what their needs were, too. They both were awesome. You know, after mom said goodbye to them, we all kind of were around and thinking back to your interview. It's exactly as she described it. You know, the only thing that was missing was it wasn't in her home.

Chion Wolf  38:56

In terms of grief. How do you think you would be dealing with your grief differently if it wasn't for her wisdom?

Dr. Paul Bluestein  39:07

Lynda and I talked about our deaths for 30 years. So to the extent possible, I was prepared intellectually for her death. The thing that I, that I know now is no matter how much you're prepared intellectually in your head for this, that the emotional part is like getting hit by a baseball bat. I'm living in an in-between. I'm so sad. Lynda was just my best friend ever. I'm so at sea. One minute, I'll be fine and laughing and telling stories about Lynda and then I'll literally turn the corner in a room and see something that reminds me of a time or a place I just, I can't breathe. I'm sure this is going to go on for a while. But it's, it's not all bad. I feared it would be. I feared that my days would just be black from one end to the other. And they're, they're not. I'm so grateful to Jacob for being here. I think that for me to have had to come back from Vermont to a totally empty and silent house would have been more than I could bear. So, I think that this was made a lot easier for me by having family around me. We all came home. I said to Jacob, I said, "Let's go talk to Lynda on the wind phone in Ridgebury. So we all got in the car and drove to Ridgebury. And I talked to her for, I don't know, 10 or 15 minutes on the phone and told her that I made the bed, which I promised to do, that I had found one of the, one of the notes that she had left for me to find in the days, weeks, months, and perhaps, I fear, years to come out. I found one of those in the box of Honey Nut Cheerios, hidden away there. Yes, Lynda was very funny. And I didn't know until that moment. Again, it's one thing to know, in your head, that the wind phone sounds like a great idea. And it sounds like, you know, it'll be a wonderful thing. I didn't know until that moment that it actually works. There's something about it. I mean, I felt better talking to her. The grief lifted when I was doing that. I can't explain in detail. It sounds stupid. But it's not. So the, I'm glad that Jacob is carrying this project on because it, it's a way of dealing with grief that I don't think that I would want to do without.

Chion Wolf  42:42

Jacob, do you want to add to that at all?

Jacob Shannon  42:45

Yeah, we, when I used it after Paul and called mom, I knew it was too much for me to say much more than "I'm trying." Because that was a pretty intense moment to pick up something I built for her to use for grief.

Dr. Paul Bluestein  43:03

And then yesterday we went to, to the Greenfield Hills Congregational Church, because I hadn't seen the site where there's going to be a wind phone, and I wanted to see it. And it's beautiful. Take a bow does such good work. And I've seen the design for it. And it's a wonderful tribute. But it's it's more than just a tribute. There's, there's something living about this. There's something that's alive.

Chion Wolf  43:33

I know that in my experiences of grief, talking about it has been really helpful. And there are times where talking about it makes it worse. And sometimes I don't know until I've opened my mouth that it's just gonna make it worse. Why do you talk about it? What does it do for you to invite me into your life, to invite documentary crews? What does it do for you?

Dr. Paul Bluestein  44:01

Talking about Lynda has always been one of my favorite things. The thing that, that, that I fear is not remembering her. Because it might cause me pain. The thing I fear is forgetting her. I fear that her voice, which I can hear in my ear now, and I'm afraid that over time, that voice may fade. And I don't want it to. And so this is a way of trying to hold on to that. I want people to know what she was like because she was remarkable. I want people to understand from a political perspective that this is the last choice they're going to make in their lives. This is going to be their last chance to decide who they are, how they've lived and how they want to die and give that up, to have that taken away from them, people shouldn't be abhorred. And I want them to understand what's at stake before it's too late for them to realize that they've taken a remarkable opportunity and not taking advantage of it. So there's, there's a societal aspect to this. But that's not really why I do it. I do it for me.

Chion Wolf  45:26

What about you, Jacob? What does all this do for you?

Jacob Shannon  45:29

It helps me to help others through advocacy. And then with the continuing with the wind phone, you know, just another branch of, of mom's, you know, compassion for other people in her undying need to just help to know that I'm furthering both of those things. Makes me feel good. No, I know, that's the best way I can honor her memory and all the things that she's ever done for me.

Chion Wolf  46:06

Jacob, how do you hope Lynda will be remembered?

Jacob Shannon  46:12

I would want my mom to be remembered as a woman of consequence who did everything she could to help other people and put every single ounce of energy into it. And fought.

Dr. Paul Bluestein  46:27

There aren't many people who have had the opportunity to live a life that really mattered. Lynda did. Instead of being cremated if there had been a stone that could have summarized her life in a single sentence, it would have been hard, but the sentence would have been, "She lived a life that mattered." The phrase that one of her best and oldest friends wrote to me, she said that she was going to miss Lynda's commitment for friendship, her warmth, her wit. And her righteous Irish outrage. I had never heard that phrase before. But I thought that that was exactly right. Righteous Irish outrage. I see things that are wrong. And I complain about them. Lynda saw things that were wrong and said, "I have to do something about this."

Chion Wolf  46:27

Paul, how about you? Well, Jacob Shannon and Paul Bluestein, I'm so sorry for your loss. Thank you so much for talking with me.

Dr. Paul Bluestein  47:48

This is a blessing.

Jacob Shannon  47:50

Yes, thank you, Chion, for having this conversation and getting the word out there. We appreciate you.

Chion Wolf  48:00

Audacious is always so lovingly produced by Jessica Severin de Martinez, Khaleel Rahman, Meg Fitzgerald, Meg Dalton and Catie Talarski at Connecticut Public Radio in Hartford. You can see photos of our guests today and hear all of our shows at ctpublic.org/audacious. You'll also find the episode about medical aid in dying that first connected us with Lynda in May of 2022. Please stay in touch with me on Facebook, Instagram and Tiktok at ChionWolf and you can always send me an email audacious@ct public.org. Thanks for listening.