HANNA ROSIN, HOST:
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(Singing) I am so sad. I'm so sad. I'm so sad.
A little while ago, I started to feel sad about the future in a way I'd never felt before - so sad, in fact, that I frequently found myself randomly singing this song as I walked through the world. I think I didn't know what else to do.
(Singing) I am so sad, so, so sad, sad, sad.
(SOUNDBITE OF MUSIC)
ROSIN: I think a lot of us have terrors about the future. Mine are climate change-flavored, but it's fine if your terrors lean in a different direction. Maybe they're political-system-goes-radically-astray terrors or my-race-or-ethnicity-will-be-targeted terrors or technology terrors - whatever. The point is, in an impressively wide variety of directions, things aren't looking so great, which to me raises a very important question. How should I think about the future?
(Singing, playing piano) I am so scared. I'm so scared. I'm so scared.
How we think about the future is important because our view of the future has real consequences. If I believe that the future is already lost, I won't bother to change my behavior - a choice which, in itself, will make the future that I fear much more likely to happen. On the other hand, it also feels dangerous to be too optimistic. I mean, complacency about the future feels like part of the reason that we got here in the first place. It didn't seem like a good idea to retreat there again.
UNIDENTIFIED GROUP: (Singing) I am so scared. I'm so scared. I'm so scared.
ROSIN: What I needed was some credible, realistic way to think about the future that I could stand behind and which preferably didn't involve abject despair, which is why I was so excited when I heard about Joy Milne, a 70-year-old woman living in Scotland who, at age 61, discovered she had a very useful - but tiny but terrifying - superpower, an unusual ability to see into the future. Maybe, I reasoned, given the way the future is often forcing itself on her, Joy might have some good pro tips about getting through the present when what's coming looks bleak.
(SOUNDBITE OF MUSIC)
ROSIN: This is INVISIBILIA. I'm Hanna Rosin.
ALIX SPIEGEL, HOST:
And I'm Alix Spiegel.
ROSIN: INVISIBILIA is a show about all the invisible forces that shape human behavior - our thoughts, our beliefs, our feelings, our assumptions. And today, we're looking more closely at the assumptions we make about the future. How do our assumptions about the future affect our day-to-day life in the present? And can they actually change what happens? Alix went to visit Joy Milne, a woman in Scotland whose experience with her husband may help answer those questions.
(SOUNDBITE OF MUSIC)
SPIEGEL: It was in the second decade of their marriage that the dreams became a problem. They were so strange and vivid. Joy's husband, Les, would thrash through the night, his arms and legs flailing wildly in response to whatever imaginary threat was torturing him - for example, the menacing blackberry bushes that had broken into his home and were obviously up to no good.
JOY MILNE: For some reason or other, the blackberries were running across the bed, and he was shooting them.
SPIEGEL: Unfortunately, Joy says that in his enthusiasm to get the gun in his dream pointed in the right direction, Les swung his arms across the bed and smashed into her face with incredible force.
MILNE: My lip was bleeding and everything. I was - you know, and my tooth - like, two teeth were loose. Well, my two crowns were loose. And we got up. And I said, well, this is becoming an awful lot more frequent.
SPIEGEL: It made no sense. Les was usually such a good sleeper. Joy dismissed it as inconvenient but not especially alarming - until one night, when Joy woke up to an even more startling attack.
MILNE: He just got ahold of me - just grabbed me, my night dress. And as he rolled over me, we both rolled out of the bed. And it was just - I really, you know, banged my head when I landed on the floor. And he was sort of (moaning) and shaking me. And, you know, but he was totally oblivious of it. And when I managed - after a lot of, you know, really shouting at him, I managed to waken him up. He was - what's happening? What're we doing here?
(SOUNDBITE OF ALIBI MUSIC'S "SLACK WIRE")
MILNE: I'm looking for one in particular, but I can't see it. Looking, looking, looking, looking...
SPIEGEL: On the surface, Joy reads like one of those brisk older women you sometimes see in British murder mysteries - the sturdy, good-humored aunt who's constantly narrating her life as she goes about the business of her day - like, for example, trying to select a picture of her husband, Les, from the box of photos that she keeps in the storage room of her small home.
MILNE: Oh, I'm just going to choose one.
SPIEGEL: The two met in high school. Les was a 17-year-old swimmer on the swim team. Joy was 16, a new transfer. She remembers dancing with him at a party and being struck by his wonderful smell.
MILNE: Oh, he had a lovely male musk smell. He really did. It was quite a strong body odor - you know, a very masculine smell.
SPIEGEL: Everything about Les appealed to Joy. He was very thoughtful and generally quiet but had a wicked sense of humor - the kind of person who'd create a joke poetry society or stage a sunflower-growing competition for his friends. Joy says his humor transformed even the mundane stuff.
MILNE: He would quip so quickly you just couldn't believe it. We would laugh quite a lot.
(SOUNDBITE OF RICHARD MEAD'S "PAPER PLANES")
SPIEGEL: Soon, Joy and Les were inseparable, two halves of the same part. So it surprised no one when several years later, Les proposed to Joy. And it surprised no one that even after they had three boys, they continued to enjoy each other in exactly the same way. Les became a doctor, and Joy became a nurse. He worked long hours at the hospital. But when he came home, she says she and the boys would drop everything to be with him.
MILNE: He used to have great fun with the kids - just playing with them, playing Lego, I mean, and reading and things like - you know, we really as a couple enjoyed our children.
SPIEGEL: Basically, life with her Les was everything Joy had hoped.
Did you guys fight very much or not very much?
MILNE: Not really, no. We disagreed about things now and again, but we didn't fight-fight. No.
SPIEGEL: But then one day, about nine years into the marriage, when Les was 31, he came home, and strangely, he smelled different.
MILNE: His lovely musk - male musk smell had got this overpowering - just a nasty yeast smell.
SPIEGEL: At first, Joy thought it must be something from the hospital and told him to take a shower. But that didn't help. And over the weeks and months that followed, the smell didn't go away. It seemed to grow stronger. So Joy started nagging.
MILNE: Kept on saying to him, look, you know, you're not washing enough.
SPIEGEL: The stench of it was hard to take because Joy has a great sense of smell. As a child, she'd find herself smelling all kinds of objects that aren't normally smelled - balls and bowls, pillows and toys.
MILNE: I used to pick things up and smell.
SPIEGEL: But then again, in her home, that wasn't that odd. Other women in her family also had sensitive noses, like her grandmother, who she loved.
MILNE: You know, she had a wonderful rose garden at the front of her house. She'd say, well, come and smell this one, Joy. You know, it's really good today.
SPIEGEL: Point is, no matter how much Joy battled the new scent on her husband, the smell wouldn't yield. And eventually, Les got mad whenever Joy told him to shower. He couldn't smell it, he grumbled, and neither could anyone else.
MILNE: So he just would stomp off in the huff - you know (laughter), literally. Oh, stop going on about that. I had to just let it go, put up with it.
SPIEGEL: Unfortunately, as the years piled on, and Les passed from 31 to 35 to 39, Joy began to feel that it wasn't just her husband's smell that was changing.
MILNE: It was his personality, his character. He began to change. He was more moody, wasn't as tolerant.
(SOUNDBITE OF COSMIC GATE AND FORET'S "NEED TO FEEL LOVED")
SPIEGEL: At first, it wasn't terrible.
MILNE: Just little things in family life with the children if they weren't behaving or that they wanted him - he wanted them to do something or - you know, and they weren't keen. He wasn't as tolerant. He just wasn't as tolerant.
SPIEGEL: But it didn't stop there. So many of the qualities she valued in her husband began to bleed away until eventually, by his early 40s, she began to see Les as a totally different person.
MILNE: It was like chalk and cheese.
SPIEGEL: It was like what?
MILNE: Chalk and cheese, as we say.
SPIEGEL: What's that mean?
MILNE: From one opposite to the other. He had been this very funny, loving, very, very considerate, very quiet person. And now I was living with somebody who was way out.
SPIEGEL: They would go to a party, and she'd watch her formerly reserved husband move through the room.
MILNE: You know, joking and, you know, obnoxious life-and-soul-of-the-party sort of thing. And I used to sit there thinking, goodness. You know - yeah.
SPIEGEL: Joy could no longer understand as she once had how he thought and why he thought and who he was. Les was a mystery.
MILNE: Well, he wasn't my Les anymore. It's just simply that. It's very strange living with another person that you didn't marry.
SPIEGEL: Joy says she ached for her Les - his humor, his kindness, his sense of play.
MILNE: That is the hard part - is always sort of wanting the other person but living with a different person.
(SOUNDBITE OF BLUE DOT SESSIONS' "MIN")
SPIEGEL: And then, of course, there were the strange dreams of rogue blackberry bushes and other dangerous intruders. It was after the second night attack that Joy put her foot down. She worried he had a brain tumor. They needed to get medical attention. She remembers sitting next to Les in a sterile office as the doctor delivered his diagnosis. Her husband had Parkinson's.
When he was told that he had Parkinson's, was he devastated?
MILNE: Yes, he was. Yeah.
SPIEGEL: Less was young for a Parkinson's diagnosis, only 45. And quite instantly, the future they'd imagined for themselves was gone, and their lives filled with worry - worry that they would not be walking down the street hand-in-hand as retirees, worry that Les would not have a long professional career with many stages, a steady ascent to the top.
They felt like all of those plans were now gone, replaced by a new, much bleaker future. It was hard to live with - this fear of what would come - of loss of movement, work, independence. Their fate had been transformed from something to be lived to something to be survived. How do you experience life when you think the coming future will be so grim? And what happens when you discover, as Joy did, that it's not just the future of your husband you can see?
(SOUNDBITE OF MUSIC)
ROSIN: NPR's INVISIBILIA. We'll be right back.
This is NPR's INVISIBILIA. Alix now continues her story of Joy, a woman who lives in Perth, Scotland, who discovered she has an uncanny superpower.
SPIEGEL: One afternoon during my visit with Joy, I asked her to take me on a walk in the center of town. Because of Joy's superpower, I was curious to see what it was like to move through the world with her.
But getting to downtown Perth posed a problem. Joy was due to have cataract surgery in a couple weeks and couldn't legally drive. And I could see perfectly well, but even in my own country, I'm a danger to myself and others. As a teenager in Baltimore in the 1980s, I failed the driver's test four times. And in Baltimore, they drive on the right side of the road. Fortunately, Joy said she could easily teach me.
MILNE: Where's the road going to be - ah, the middle of the road. You're on the wrong side.
SPIEGEL: Oh. Just kidding.
(SOUNDBITE OF MUSIC)
SPIEGEL: Unfortunately, Joy had no idea who she was dealing with.
MILNE: You're going to look right. You're going to look right.
SPIEGEL: (Laughter) Sorry.
(LAUGHTER)
SPIEGEL: But we made it...
OK.
...Physically, if not emotionally intact, and started walking.
MILNE: This is the back of town.
SPIEGEL: Perth is a beautiful city on a river. But for Joy, walking in downtown Perth is a little like walking through a field of land mines.
MILNE: Oh.
SPIEGEL: Because Joy has such a hypersensitive sense of smell, whole streets needed to be avoided due to a single shop selling scented candles. The weight of that smell is just too much for Joy to endure.
MILNE: We've come down the wrong street, you know. I'm not thinking here.
SPIEGEL: Which brings me to Joy's actual superpower. You see, Joy's nose is so good she can literally smell disease - all kinds of illnesses - tuberculosis, Alzheimer's, cancer, diabetes. The discovery of this unusual talent actually happened in downtown Perth in a small brick building where local groups hold classes and community meetings. Joy and I made our way there and stood outside in the rain, looking up at a window on the second floor.
MILNE: You see where those lights there? That was where the room is.
SPIEGEL: There's a whole bunch of science that is enabled by you that started in that room.
MILNE: Yes (laughter).
SPIEGEL: And no one would know.
MILNE: No.
SPIEGEL: The discovery happened years after Joy and Les got their diagnosis - almost two decades filled with anger and sadness and anxiety and a slow narrowing of their world until finally, they decided to attend a support group for people suffering from Parkinson's. It met in that room with the window on the second floor.
MILNE: We were late. You know, a lot of people were there. And I walked into the room, and I thought - no, the smell.
SPIEGEL: It was the same greasy, musty smell that Les had - the smell Joy had first sensed when Les was just 31. Les had carried the smell around all that time. In fact, it had grown progressively more intense as the years passed. But Joy no longer mentioned it. There were so many other more difficult things to deal with. But that day in the room, there was the smell once again, only it was on other people
MILNE: And then I realized different people smell different levels. For some people, it smelled stronger, and other people, it didn't smell so strong.
SPIEGEL: Joy was confused. She had no idea that Parkinson's had a smell. At that point, no one did. So Joy was literally sniffing around trying to figure out what was going on.
MILNE: I kept on thinking, well, this is - it's the people - I had to go and speak to people because people that didn't have Parkinson's - I had to try and see if it was just the room, or I was - such a - this was just nonsense. Because when I was out in the kitchen with the carers who didn't have Parkinson's, the smell wasn't there. But when I went back into the room where the Parkinson's people were, the smell was there.
SPIEGEL: Could it be, Joy wondered to herself, that Parkinson's had a smell?
MILNE: You know?
SPIEGEL: As they drove home from the meeting, Joy kept puzzling it over in her head. And by the time they arrived, she decided she'd tell her husband.
MILNE: I sat him down at the table. And I said to him, look. I've got something to tell you. You know, I used to nag you about the smell. He said, that smell again. I said, well, you know, I think it's here all the time now. And he said, Joy, well, yes. I said, those other people in the room with Parkinson's had the same smell. He just looked at me. He said, what are you talking about? I said, the people with Parkinson's in that room had the same smell as you.
SPIEGEL: And that was when a new look came into Les' eyes.
MILNE: He's a doctor. We both understood the significance immediately.
SPIEGEL: To begin, this would be a new scientific discovery. But also, Joy had smelled the disease on Les more than a decade before his symptoms got severe enough for them to seek medical help. If Joy could predict Parkinson's before its well-known symptoms, like shaking and sleep disruption, even started to appear, maybe she could work with researchers. It could lead to a breakthrough.
Joy and Les knew instantly that they had to get this information to the right scientist, so they started doing research trying to track down a person who might be open to what sounded like complete nonsense. They looked at people from all over and finally found a respected researcher named Tilo Kunath, who was going to be giving a talk several hours from their home in Edinburgh. The plan was to have Joy stand during the question and answer period and announce their discovery. But at least initially, Joy's revelation didn't generate the desired response.
When I was in Scotland, I met with Tilo. And he acknowledged that the first time he encountered Joy, he was deeply skeptical.
TILO KUNATH: I just dismissed it. I have to say it. I didn't - it just didn't seem possible. Why should Parkinson's have a odor? That's so off the radar that you wouldn't normally think of neurodegenerative conditions such as Parkinson's or Alzheimer's or anything to do with the brain to have an odor.
SPIEGEL: And that would have been the end of it except that, five months later, Tilo was sitting in his office talking to another researcher. And she mentioned this interesting thing she'd recently heard.
KUNATH: Had I heard of dogs that could smell cancer or different types of cancer? And cancer is not usually something you'd associate with an odor.
SPIEGEL: Which, of course, made Tilo think back to Joy - so he tracked her down and asked her to come to his lab for a special test he devised himself. It involved T-shirts.
MILNE: White T-shirts. He said, I'm going to give these to people with Parkinson's.
SPIEGEL: But not just people with Parkinson's - he also recruited people who didn't have Parkinson's as a control group then passed the T-shirts out to all the people who'd agreed to be in the study.
MILNE: Give them to people to wear for a day.
SPIEGEL: After the T-shirts were returned, Tilo cut each of them in half from the neck to the waist. He wanted Joy to have a larger number of samples to smell.
KUNATH: They were all given randomized numbers and put in a box. And then she was asked to take each one out and smell it and give it a score.
SPIEGEL: Was the person who wore this T-shirt at an early stage of Parkinson's, a late stage, something in between? Or maybe they didn't have Parkinson's at all.
(SOUNDBITE OF SNIFFING)
KUNATH: She was incredibly accurate.
SPIEGEL: In fact, out of 24 samples, Joy only made one mistake. She identified a man in the control group without Parkinson's as having the disease. Still, Joy far outperformed Tilo's expectations. She was even able to put the T-shirts back together again via smell at the end of the session. But for Tilo, the thing that really shook him didn't emerge until months later when Joy's one mistake - that man in the control group Joy identified as having Parkinson's - approached Tilo at an event.
KUNATH: And said, Tilo, you're going to have to put me in the Parkinson's pile because I've just been diagnosed.
MILNE: And that was the deciding moment.
SPIEGEL: It was incontrovertible. Joy, a 63-year-old British woman who'd lived a quiet, fairly uneventful life could not only smell Parkinson's but could predict it even in the absence of its typical medical presentation. She was like a sturdy Mary Poppins character, only her magic was an ability to smell the disturbing future lurking just around the next corner of your life.
(SOUNDBITE OF MUSIC)
MILNE: We've come down the wrong street, you know.
SPIEGEL: The day we visited downtown Perth, I kept asking Joy about what it was like to have this strange ability.
What does Alzheimer's smell like?
MILNE: It's not like the Parkinson's very sort of musky smell. It's a lighter smell. So the molecules are obviously different.
SPIEGEL: I asked her to describe cancer, TB, diabetes...
MILNE: Can smell a bit sweet and sickly.
SPIEGEL: But it obviously made her uncomfortable. To her, my questions didn't even make sense. Smells just smell like that smell.
MILNE: They smell as they do. It's like, as I said, you've got milk, or you've got sour milk, you know? That's the change from a well person to somebody who has a disease.
SPIEGEL: But I want to focus for a second on one of the most amazing things about Joy's ability. It's not just that she can identify diseases with her nose. Sometimes she can smell how far along or advanced the disease is, can whiff the scent of that man sitting next to her in the waiting room and know not only that Alzheimer's is eating away at his brain but how far along the damage is. Because of this, Joy now works with researchers all over the world. And, apparently, one of them likes to joke that Joy is much closer to a dog than a human.
MILNE: You don't go around smelling, do you?
SPIEGEL: No.
MILNE: See; I think that must be a whole different experience in life.
(SOUNDBITE OF MUSIC)
SPIEGEL: Essentially, as Joy moves through the world, she can sometimes glimpse a possible future for the people around her. To be clear, she never knows what will happen in their life. She wouldn't be able to say whether the tuberculosis she smells stewing in that boy's body will ultimately do him in, but she can see a small piece of what's coming. Again, that's why I'd been so anxious to meet her. I figured that, because of her superpower, she's had a lot of experience living day-to-day with possible but not 100% certain futures.
But it turned out there was a small problem with my plan. You see; the task of looking squarely at a difficult future can feel so dangerous, there's a natural impulse to create guardrails. Joy says when she first started telling people about this new ability she'd discovered in herself, the response was not always positive.
MILNE: Some people backed away (laughter).
SPIEGEL: Did they literally back away?
MILNE: Yes (laughter). Yes.
SPIEGEL: I actually saw this myself when I was with Joy. One day during our visit, we went to lunch at a local restaurant. And when the manager saw my microphone, she asked what we were talking about. But once I explained Joy's ability, she literally screamed and ran into the kitchen. She didn't want to be near Joy because she didn't want to hear about the future. Having recently spent a lot of time talking to climate specialists, I have a certain amount of sympathy for that position. And Joy says the primary scientist who's been working with her also understands this.
MILNE: Perdi, you know, she took it on.
SPIEGEL: Professor Perdita Barran is an analytic chemist at the University of Manchester. And once it was established that Joy really could sometimes smell Parkinson's years before it was officially diagnosed, Barran decided to use Joy's nose to come up with a test that confirmed the presence of the disease based on its molecular signature. It was a complicated process involving a large machine and hours of Joy smelling cotton swabs and Q-tips covered in skin oil. But right from the beginning, Professor Barran, with Joy and Tilo, decided there needed to be a very strict set of rules governing Joy's behavior.
MILNE: We decided in the very beginning the protocols would be quite firm - that I could report on the swabs that we were doing and the Q-tips, et cetera, but I would not approach a person.
SPIEGEL: If Joy smells a disease on someone that she meets out in the world, she's not under any circumstances allowed to tell them - a rule which has clearly been a blessing.
MILNE: I am in this awkward situation. I am in this awkward position where I smell something, and they could or could not be diagnosed. So I have had to accept that fact that I can smell that, but I can do nothing about it.
SPIEGEL: Just imagine for a moment the weight of Joy's gift.
You can see the future.
MILNE: Well (laughter), you could say that. But yes, I can see the future of the medical sort of history. But yes.
SPIEGEL: You can see the future of their medical history.
MILNE: (Laughter) Well, it's odd. But yes.
SPIEGEL: What would it be like to have this power, I wondered - more than wondered. In the weeks leading up to spending time with Joy, I found myself worrying a lot about what it would be like to be with her. What kinds of things would she smell on me? Would she know if I had a glass of wine the night before we met, maybe detect from my coat that my mother is a two-pack-a-day smoker and I'd gone home to see her the weekend before? Then, of course, there was my deeper fear that she would smell Alzheimer's on me. There is a long history of Alzheimer's in my family. And every time I forget a name, a small voice in the back of my head takes note. If she did smell it, would I be able to tell? How good was her poker face? Good enough to disguise such an ugly truth? I couldn't bring myself to ask directly. I just inched as close as I could.
So right now, if I had Alzheimer's, would you be able to smell it on me?
MILNE: I think so. You're close enough (laughter). And you've been in the room long enough. But, you know, (laughter), that's how it is. But yes.
SPIEGEL: Yes, but no. But yes.
(SOUNDBITE OF MUSIC)
SPIEGEL: I didn't push any further. I didn't want to know because I didn't want to have that future hovering in front of me as I moved through my day-to-day life corrupting even simple pleasures - going to the grocery store, being with my children, watching TV. Until recently, I barely thought about it. But it's remarkable how much of our experience of the present depends on our view of the future. It touches everything - relationships, jobs, personal goals - an invisible force subtly shaping our interactions.
But to be honest, Joy didn't seem that interested in helping me resolve my difficulty with the future. She'd taken up a very practical position vis-a-vis her own gift. Yes, she could see more of the future than your average Joe, but she didn't allow that to affect things - ever. No matter how I asked Joy the question...
How do I not allow what I see in the future to infect the present?
What if you could save somebody's life by breaking the protocol?
Let's say you sat down next to one of your grandchildren.
...Joy wouldn't go there.
MILNE: I have this ability. But it's not something I can just use.
I have had to accept that fact.
That's not fear; that's intruding into other people's privacy.
SPIEGEL: Finally, I think she got tired of me asking and told me that I should go and talk to her friend Alison Williams. Alison would have something useful to say about living day to day with a devastating future, which is how I ended up in a cozy apartment in Edinburgh sitting at the feet of a woman with an extremely large and menacing saber in her hand.
ALISON WILLIAMS: The latest move I've done is called cut off a thousand heads. I could take you out in a oner - no bother at all (laughter).
(SOUNDBITE OF MUSIC)
SPIEGEL: NPR's INVISIBILIA - we'll be back in a minute.
(SOUNDBITE OF MUSIC)
SPIEGEL: Ten years ago, when Alison Williams was 63, she went on a walk with her husband in the snow. That was the first time she noticed.
WILLIAMS: In the snow, his footprints were clear, and my footprints each had a scuff mark behind them. So I put it down to - oh, my boots didn't fit.
SPIEGEL: But then she noticed that her speech was getting softer. And on one occasion, she became very confused about where she was. So she went to the doctor.
WILLIAMS: The doctor said it's Parkinson's. I said, I want a second opinion - found a large bucket of sand and stuck my head in it.
(SOUNDBITE OF MUSIC)
SPIEGEL: Alison says for more than a year after the appointment, she refused to engage with her Parkinson's. She took the medication her neurologist gave her but otherwise didn't speak of the disease and tried to avoid people who did.
WILLIAMS: I didn't really want to know what my future might hold.
SPIEGEL: What do you mean you didn't really want to know what your future might hold?
WILLIAMS: Well, I believe firmly that words cast spells. And I'm very careful about what I tell myself. So I mean, I am the story I tell myself about myself. And it's a very fine line that one treads.
SPIEGEL: Alison worried that if she focused too much on what was coming, her life would inevitably take on the shape of her worst fears. To a small degree, that had already happened.
WILLIAMS: My mother had rheumatoid arthritis. And she had a small, electric buggy that she drove around the streets in because she couldn't walk properly. And emotionally and mentally, when I got my diagnosis, I put myself into that little electric buggy and emotionally and mentally drove myself around in it.
SPIEGEL: And so as time passed, everything about Alison got slower and less fluid until she was completely changed. That's when Joy and Alison first met.
(SOUNDBITE OF MUSIC)
SPIEGEL: It's funny - today, you wouldn't necessarily put Joy and Alison together. Joy presents, like, your sensible British aunt. Whereas, the first time I met Alison, she was in a chic red leather skirt. But apparently, the two of them hit it off immediately.
WILLIAMS: She and I had an instant kind of rapport.
SPIEGEL: Here's Joy.
MILNE: We liked each other immediately. I thought, oh, damn this stupid disease. Here was this woman who was hunched and shuffling, and her voice was very, very quiet. You had to really, really concentrate to hear her.
SPIEGEL: But shortly after Joy and Alison first connected, Alison decided she'd had enough of driving around in her metaphorical buggy. She was going to really live her life. So Alison started taking a whole bunch of classes.
WILLIAMS: I took up a wonderful class called Mature Latin Movers.
SPIEGEL: Mature Latin Movers was both physically and cognitively demanding. Every week they had to remember a routine. But Alison didn't stop there. She had another dance class then leaned more heavily into her practice of tai chi with weapons. Also, she got a personal trainer.
WILLIAMS: Finally, I took up taiko drumming, Japanese drumming.
SPIEGEL: It was about 11 months after starting these new activities that Joy and Alison met again. Alison was no longer hunched and shuffling. But more importantly, Joy couldn't believe Alison's smell.
Parkinson's disease is sometimes divided into five stages. In stage 1, there are mild symptoms like tremors, but by stage 4, symptoms are so extreme, people are warned not to live alone. Joy, of course, can smell them all.
WILLIAMS: When she met up with me the second time, the change in my smell was so radical and so unexpected that she got ethical permission to talk to me about it. So she said, I don't know what it is you're doing, Alison, but whatever it is you're doing, keep on doing it because you've brought your smell level from a high three right down to a one since I saw you last. And that was the most extraordinary moment meeting Joy. The second time we met up was absolutely key to this.
SPIEGEL: Because hearing Joy say that Alison's actions had made such a difference helped Alison rethink how she'd been viewing her Parkinson's.
WILLIAMS: I had an argument once with one of the people from Parkinson's U.K. about whether you call it Parkinson's disease, talk about having a disease or having a condition. Now, in order for me to live a good life on a day-to-day level, I have to say to myself, I'm not ill. I have a condition, and I'm not ill.
(SOUNDBITE OF MUSIC)
SPIEGEL: As someone whose specific terror of the future is climate change, this made a lot of sense to me. After I reported the first story of the season, which involves spending a large amount of time with people who work on climate issues, I found myself infected by the despair I'd heard from many of them. Suddenly, when I looked to the future, all I saw was loss and pain.
So I changed a whole series of my behaviors. I mean, I know individual acts of deprivation aren't the answer given the kind of system change we need, but I still wanted to feel like I was doing what I could. I didn't want my fingerprints on the knife, so I stopped eating meat, stopped driving my car unless absolutely necessary, reduced my travel. But often, these actions felt stupid and useless. Why should I bother when a bad end in terms of the climate was all but inevitable? Shouldn't I just live it up, eat steak three times a day and go down in style like the musicians who played on the deck of the Titanic as it slipped into the sea?
But talking to Alison made me realize that part of the problem was this hidden assumption I was carrying around in my head. I was thinking of climate change as a disease that spelled the end rather than as a condition that I could adapt to and live with. I explained this to Alison. That figuring out how to think about the future was the thing that, in a strange way, had led me to her.
I was looking for realistic hope, something that was not, oh, kind of rainbows and ponies, hope that you could credibly carry around with you.
WILLIAMS: There's all sorts of different kinds of hope.
SPIEGEL: And that's when Alison gave me some practical advice about living with conditions, whether those conditions are Parkinson's or climate change or the potential death of democracy, whatever your particular flavor of terror happens to be. The trick, as I understand it, is not to focus so much on the outcome, but instead concentrate on the process. The question to ask was not, where will this end, but what is the next right thing to do? What time tonight does Mature Latin Movers start? Can I go to taiko drumming on Monday?
WILLIAMS: If I pinned my hopes to a cure, I would just be waiting. And it wouldn't come, and I would get resentful and disappointed and depressed and be much more likely to fall off my perch quicker. So I pinned my hopes to living a life as well as I can as good as I can every day from one day to the next. That's my hope.
(SOUNDBITE OF MUSIC)
SPIEGEL: Do The Next Right Thing feels like the kind of slogan that would look good embroidered on a tea cozy or T-shirt, but I worried it didn't rise to the challenge of the actual world we seem to be living in, where every time you turn on the news, there are 10 different stories that make you feel mortally discouraged like there really is nothing you can do.
Alison, though, wouldn't accept this. Her bad future, she pointed out, had already arrived, but she still managed to move forward without letting the outcome of her disease define her everyday life. She wasn't saying it was going to be easy. She was just saying it was a viable strategy.
(SOUNDBITE OF DRUMMING)
WILLIAMS: (Speaking Japanese).
SPIEGEL: Before I left Alison, I had her show me some of the things that she'd learned from her many classes. We started with her Japanese Taiko drumming. Then she put her drumsticks away and brought out her saber, one of the weapons she uses in the Tai Chi classes she's been taking. I asked her to describe it.
WILLIAMS: It's about 3-foot long.
SPIEGEL: A 3-foot-long saber?
WILLIAMS: Yup. It's just very beautiful. It's just very nicely balanced.
SPIEGEL: In the evenings, Alison picks up this enormous weapon and waves it through the air in a series of prescribed motions.
(SOUNDBITE OF MUSIC)
SPIEGEL: She did them for me, her eyes shining and full of mischief, then lowered her weapon and pointed to the ceiling lamp hanging above us. It had an enormous gash in it.
WILLIAMS: It's a rip in the paper lampshade. That's where I got a bit carried away in my practicing with the saber.
SPIEGEL: (Laughter).
WILLIAMS: So be afraid.
(SOUNDBITE OF MUSIC)
SPIEGEL: Oddly enough, it was talking to Alison that gave me a new perspective on what happened with Joy and her husband Les. On the last day of the time that we spent together, Joy pulled her box of photos out of storage so she could show me a good picture of her husband.
MILNE: Not that one - and it's not that one. It's this one.
SPIEGEL: It took a while, but she finally found one. Les was young and smiling a huge smile, with a white coat and thick eyebrows.
MILNE: Very bushy eyebrows - everybody commented on the caterpillars. My grandchildren loved playing (laughter) with them. It was really funny.
SPIEGEL: Joy paused a moment staring down at the image, and her face changed. You could see her eyes beginning to fill.
Why are you crying?
MILNE: Well, because it's just sad looking at the photographs.
(SOUNDBITE OF MUSIC)
MILNE: You know, looking at how happy we were. I still find that difficult, going back.
SPIEGEL: It was just so powerful, their love, but such a long, long time ago.
You actually only had a relatively short amount of time with Les as he was.
MILNE: With my Les.
SPIEGEL: Yes, with your Les.
MILNE: Just about 14, 15 years with my Les, and then from 30 to 65 is 35 years, so I had 35 years without my Les.
SPIEGEL: And you really think about it as my Les, not my Les?
MILNE: Yes.
SPIEGEL: But then Joy tells me that her Les did, at the very end, briefly reappear. It was after he realized that he and Joy might be able to make a difference for other people.
MILNE: Strangely enough, when we'd completed the smelling test, literally six weeks before he died, Les became really animated about it. He was so pleased. And I got a glimpse again of that man who really cared, who really had a purpose and who could do something.
SPIEGEL: Joy says once word came back that she'd been right about the one supposed mistake she'd made during her smelling test, confirming that Joy really could predict the disease, Les had a eureka moment. Joy had smelled as Parkinson's more than a decade before diagnosis, so maybe he told Joy if they thought about it very carefully, they could pinpoint early symptoms that hadn't yet been identified by science.
MILNE: We had to write down everything that happened so that medicine would understand what was happening to people with Parkinson's.
SPIEGEL: And so for the last six weeks of his life, Joy and Les sat daily for writing sessions.
MILNE: They would only last 35, 40 minutes at a time, and he'd maybe do two sessions in a day. But, you know, the last six weeks were completely different. We spent some time every day discussing what happened to us over the last 20-odd years.
SPIEGEL: Through these discussions, Joy began to understand more about her husband's struggle.
MILNE: You know, I wasn't feeling his tiredness. I wasn't feeling how the tiredness made it different at work for him or how it made it different for keeping our big house and garden.
SPIEGEL: Likewise, Les was able to see how his anger and impatience had hurt Joy.
MILNE: He saw how erratic it had been sometimes for us, and that mattered. That really mattered to him.
(SOUNDBITE OF MUSIC)
SPIEGEL: Joy says Les had always shied away from talking about his Parkinson's. It just seemed like it was so existentially threatening to him, this terrible dread disease, that he'd just had to shove it away and couldn't acknowledge it. But once it became clear that Joy might hold, in her nose, the keys to moving research on Parkinson's forward, maybe one day even altering the way this condition evolved, Joy says he changed.
MILNE: He became more affectionate, more personally affectionate for us. It was really quite nice actually.
SPIEGEL: Your Les came back to you?
MILNE: He did. He definitely did, yes.
(SOUNDBITE OF MUSIC)
SPIEGEL: If you think about it, Joy and Les were actually doing a version of what Alison suggested we all do when faced with a difficult future. Their focus had shifted from what seemed like an inevitable outcome - struggle, pain, death - to what Les and Joy could do right now to live the best life they could - talk, learn, contribute, love each other. And that shift apparently helped Les feel better. In fact, Joy says, the work they were doing together in the last six weeks of his life was the last thing that she and Les ever talked about.
MILNE: He made me promise that I would continue the research. He said, you won't let this go. You will do it, won't you? - you promise? A couple of hours later, he dropped dead.
(SOUNDBITE OF MUSIC)
MILNE: But I've done it, yeah. I kept my promise, so it should make an awful lot of difference.
SPIEGEL: It might make a difference. It might not make a difference. The answer to that is in the future, and the future is impossible to know. But lately, whenever I felt overwhelmed, distressed that a terrible end is looming, I pull out my new little mantra and worry it like a rosary. Focus on the next right thing, I say to myself. Focus on the next right thing. Focus on the right thing.
(SOUNDBITE OF MUSIC)
ROSIN: That's Alix Spiegel. And because we're living in this new reality right now where it's pretty unclear what the future looks like, we at INVISBILIA would love to hear from you, our listeners, about your next right thing. It could be tiny. It could be ambitious. It could be mundane. It could be very, very particular. We'll take any right things that you got. We truly could use the inspiration and advice.
So if you're game, please record a few sentences for us on your phone, and send the audio file to invisibiliamail@npr.org. We are going to share a few of our favorites on the next episode. The deadline to send them in is the end of the day on Tuesday, March 24. And love to all of you. Stick around for a sneak peek of next week's INVISIBILIA.
(SOUNDBITE OF MUSIC)
ROSIN: When the city council candidates stood up and said he was black, some people in the room were like, yeah.
UNIDENTIFIED PERSON #1: Yeah, I said I knew it. I knew he was a brother.
ROSIN: But other people suspected he was lying.
UNIDENTIFIED PERSON #2: All the vinegar he was putting in the hair to make his hair stay curly and nappy.
ROSIN: So did the man with the ginger brown afro and blue eyes lie about being black just to get the black vote?
UNIDENTIFIED PERSON #2: No, he ain't black. He's white.
ROSIN: Or was there another way to think about what happened?
UNIDENTIFIED PERSON #3: No, no, no. What do you mean by white?
ROSIN: Next week on NPR's INVISIBILIA, the story of a man whose blackness was fiercely contested and the havoc that wrought on his city.
(SOUNDBITE OF MUSIC)
SPIEGEL: INVISIBILIA is hosted by Hanna Rosin and Alix Spiegel. Our senior editors for this season are Deborah George and Anne Gudenkauf. This episode was produced by Alix Spiegel and Kia Miakka Natisse. INVISIBILA is also produced by Yowei Shaw and Abby Wendle. Our manager is Liana Simstrom.
ROSIN: We had help on this episode from Alec Stutson, Daveed Goodhertz (ph) and Pranav Baskar. Fact-checking by Joy Crane (ph) and Susie Cummings. Our technical director is Andy Huether, and our senior vice president of programming is on Anya Grundmann.
SPIEGEL: Special thanks to Mark Memmott, Michael Ratner (ph), Emily Bogle, Gerry Holmes, Barbara Aria (ph), Lawrence Carter-Long, Martha Nance (ph), Karen Margolis (ph), Elizabeth Ogrin (ph) and Deborah Fletcher (ph).
ROSIN: To see an original illustration for this episode by Leonardo Santamaria, visit npr.org/invisibilia. Join us next week for more (singing) INVISIBILIA, INVISIBILIA.
(SOUNDBITE OF MUSIC)
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