Aaron Goodman: Welcome to the chemical sensitivity podcast. I'm Aaron Goodman, host and creator of the show. I'm a long time journalist, documentary maker, university instructor, and communication studies researcher. And I've lived with Multiple Chemical Sensitivity or MCS for years. MCS is also known as chemical intolerance and toxicant induced loss of tolerance or TILT.
The illness affects millions around the world. And the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.
Small amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants, and more can spark a cascade of debilitating symptoms. Dismissed by healthcare providers, employers, and even loved ones, many feel misunderstood, isolated, and invisible.
This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.
In this episode, I'm speaking with Adelia Shepard and Sherry Crowell Shepard who live in Nova Scotia on the East coast of Canada. As a younger person, Adelia grew up watching her mother, Sherry, dealing with MCS. It impacted almost every part of their family life and mother daughter relationship. The illness is something they talk openly about.
Adelia has two daughters who are four and six years old and Sherry's MCS continues to be an important consideration for all of them. You'll hear an honest and moving conversation about MCS and how it colors their lives. And I think a lot of listeners will relate.
[00:02:29] Aaron Goodman: Let's start with a bit of an introduction, if we could. Sherry, do you want to let folks know who you are and where you're coming from?
Sherry: I am Sherry Shepard, and I live in the Annapolis Valley of Nova Scotia, Canada. I've had MCS since diagnosed since 1997.
Aaron Goodman: Thank you. Adelia.
Adelia: I’m Adelia Shepard, I'm Sherry's daughter. I remember growing up with her being very ill. We are in a much better place than we were.
[00:03:01] Aaron Goodman: Yeah. Okay. Well, thank you so much. So, Sherry, do you want to take us back to when it was when you got ill?
Sherry: Um, 1991. I associated it at the time to stress because I had small children. I was working full time. I was studying some courses at Acadia as well. And, my father was dying of cancer. And I had a very abusive boss, so I just attributed it all to stress. And then I was officially diagnosed, in 1995 by Dr. John Molett in Ottawa and Dr. Bruce Elliott in Dartmouth, Nova Scotia, and then I, entered into the Nova Scotia Environmental Clinic in 1997 with an official diagnosis as well from there.
[00:03:56] Like I said, my workplace was very abusive with our supervisor, not just myself, but others as well. And, you think it's stress, so you think there's a lot of hormonal stuff happening, but it wasn't. It was actually a mold in the building, I would bleed for no unknown reason at that time.
And I was extremely exhausted and sore throats, headaches. And I was trying to truck through, not missing any time. I'd go to work sick because, again, the supervisor wasn't very kind. And so I went to the naturopathic doctor in '91 and she started treating me with natural medicine for my system, toxic system, et cetera. I was fortunate. My family doctor was the AIDS doctor for the Annapolis Valley. And he had done a lot of blood work that kept coming back normal. And he said to me, I know you're sick, because he'd known me since I was 15. So then he referred me to Dr. Bruce Elliott, who was the provincial AIDS doctor at the time. He's now passed, but I went to him and he knew right away what it was.
[00:05:16] So then the real technical journey began because I had to deal with a supervisor who wouldn't believe there might be something wrong with her building. And so the health and safety officer became involved and so he took all of our symptoms of all of us in the building, many of us had symptoms, and he had us write them down, and then he did the testing for the molds. And the testing came back with a lot of molds in our building. It was an old house.
So then he took those results to Dr. Daryl Grund, who was a biologist. He's now passed as well, but he was a biologist in the biology department at Acadia who specialized in molds. And he gave him the symptoms we were all having, including me with my bleeding for no reason. And he said all, all of these symptoms are from these molds. He knew it and he said, and more can be caused from these molds, so that, then I had to do a work refusal based on what we had as proof because my supervisor wouldn't listen to the health and safety officer. And so then I did the work refusal and things, they did do some renovations to the building to try to correct it. But by that point, I was too ill and I had to go off work.
And Dr. Elliot referred me to Dr. Molette in Ottawa, John Molette. And he was capable of doing injection testing so that you could not say it was psychological because I didn't know what I was being injected with, nor did his nurse. It was, it was he who knew, and so it's called double blind testing, and that testing, confirmed again, you know, and he explained to me what I had. He explained to me that, you know, my immune system would always be low. I just had to strengthen what I had left.
[00:07:20] Aaron Goodman: So the diagnosis was Multiple Chemical Sensitivity.
Sherry: Multiple chemical sensitivity. I, and I also was diagnosed with, uh, chronic fatigue syndrome at that time. Okay. And I have Epstein-Barr, and I would attribute that back to my grade nine year when I had what we thought was mono, which is in the same family. But I, my blood work does show Epstein-Barr virus.
[00:07:50] Aaron Goodman: And how old were you, Adelia, at the time? I believe you said you were seven. And what were you seeing at home?
Adelia: Was scared. I saw a mom who had no energy. She couldn't do the things that we were accustomed to doing. We weren't going out and playing anymore. We weren't planning vacations anymore. I was staying more and more at my grandmother's house. We lived there during the week to go to school, because my parents worked full time, but it was, beginning to be like weekends, we weren't going home, they would still come down and see us because they always came down to, to my grandmother's, but it would be for short stints of time.
So they'd come when mom was feeling like she could get up and get out of bed. There was a lot of times that she stayed in bed all weekend and we only saw my dad. And you know, he would just say, Mommy's not feeling good today. She wasn't able to come. She'll see you next time. And we just said, okay.
But it was hard. It was scary. You see somebody who is literally a vibrant, fun person who was full of life, who loved to sing and play with us and do all kinds of things with us. And it just stopped. It just stopped.
[00:08:56] Aaron Goodman: Yeah. Was there anything in particular that stands out for you about things that were challenging to do together?
Adelia: We weren't able to do Christmas concerts together. She couldn't go to our Christmas concerts. She had to carry oxygen with her at all times. I remember, like we never went to a craft fair until I was in my 30s. We didn't do anything. Vacations were very much, if we were going on a vacation, she did a sniff test of the hotel room, and if she couldn't stand it, we didn't stay. I don't have a lot of memories growing up where mom was present for all the fun things.
[00:09:42] Aaron Goodman: And Adelia, it sounds like you were also from a very early age understanding that, that your mom was ill and you were really had a lot of compassion as a young person. But did you have any mixed feelings?
Adelia: I had anger. I was angry. I, there was no doubt I had a lot of anger. I was sad. And in that mix was, I was scared. There was all kinds of fear because as a kid you don't know. I didn't know if I was waking up one morning and my mom was gonna be dead. I didn't know if I was gonna go to school one day and halfway through my day, get a phone call from somebody saying, hey, you have to come home, you know, we have some bad news. Or if my dad was to come pick me up. It was constant fear.
[00:10:24] Aaron Goodman: Sherry, do you happen to remember how you explained Multiple Chemical Sensitivity to your children when they were young?
Sherry: Well, I didn't go into great detail because I was learning myself at the time, but I remember explaining to them that we have, some people have allergies and like to grass and that kind of stuff. And that for me, it was perfumes or the diesel. If I got behind a diesel vehicle, I mean, diesel could enrage me, it changed my whole personality. So I would try to explain things in those, the simple ways to them, and I talked to them about how toxic these things were. But I didn't talk to them a lot about the death. Because as any parent you want to live for your kids, but I knew I wasn't going to if I didn't figure out what was wrong with me.
I lost all the pigment in my skin. I was gray. I was bleeding for no reason. And I had no energy. My husband would have to help me get up on a Saturday morning to shower because I couldn't get to a shower on my own.
[00:11:33] Aaron Goodman: When you recall when you first got ill and got a diagnosis and recognize how to stay safer and healthy, were there adjustments you had to make at home in terms of…
Sherry: Yes. Well, our house overall was pretty good. But I knew I had to have better because I had to have better air quality and where we lived in New Minas is a high traffic area. So I knew we knew we had to move. And going to the clinic, I made the connections to people who could build me an enviro home, so my house is an enviro home designed for me, um, and we moved up onto the north mountain, which is where my, my husband's family's from. And I'm near the Bay of Fundy, so the salt water actually was helpful. One of the things we did notice if we came up to the bay area, the salt water helped my breathing. So we moved here in 1998.
[00:12:27] Aaron Goodman: Adelia, if you remember, do you remember when you were younger? I'm imagining if it's anything like our house, when our kids come home, they're straight into the bath or the shower, we don't use any scented products and there may come a time when they may want to or paint. Well, I mean, my daughter uses natural nail polish and stickers, but, yeah. I think there's always some kind of tension. There can be tension with younger people about these sort of things, adjustments that need to be made. Do you recall anything specific, Adelia, back when you were younger?
Adelia: I wanted to be able to be like every normal teen. And mom acknowledged that. That was one of the things that we would talk about. She would acknowledge, you know, I understand that you may want to do this. But this is my reality and we can't because I respected my parents, did what was asked.
So we had no scented shampoos. That was, I think, the hardest thing because we went from being kids being able to use like the fun kid shampoos to being using unscented, more natural products that just didn't do what we thought was what was supposed to be done. And so that I think was a bigger shock, the laundry part, like the laundry detergents and not using the scented laundry, that wasn't as big of a deal to me. But I remember as a teenager going to parties with my friends and, you know, the one thing I will say about my parents was, it was very much open with my friends, like we weren't asked to keep anything a secret in regards to my mom's illness. So, whatever questions my friends had about why they couldn't come to my house if they were wearing scented products or scented laundry detergent, my mom would answer. And I think that was a big thing because they were learning right along with me. Because I didn't always know the answers to why they couldn't, so I'd ask.
But I think some of the biggest issues that we found or I saw was that we would go to family functions and mom would have to be left out. Because my dad's family either didn't believe she was really sick or didn't believe that the scented products were what made her sick. So my mom wouldn't go to dinners at my grandparents house and we were all very close. My cousins and I were extremely close. We'd sit in a hallway and eat a meal together and not think anything of it with all of our feet touching.
[00:14:57] Sherry: There's a lot of them in the family. The whole herd.
Adelia: So for me, it's like. I was being respectful, but I also was very much an advocate for my mom at a young age. So like, if you were coming to my house, you weren't wearing what you thought you were wearing, because you weren't coming if you wore sense. And if you did come, you were showering when you got to my house, because you weren't going to smell in my house, because you weren't going to make my mom sick. And I think that was one of the big things I remember, I wasn't easy going about it. I was very much, you're not making my mom sick. Like, I'm not doing this again. Like, I'm done. So I had a lot of friends that chose not to come over. But the friends that did come over were very respectful about it.
[00:15:53] Aaron Goodman: Yeah, that was something I wanted to ask you about, Sherry. How do you respond? When you hear Adelia reflect on some of the challenges of when you had your illness when she was a girl.
Sherry: I understand the feeling of missing out. I can empathize, for an example her school dances, I couldn't chaperone a school dance. Or when they were going off to do something special.
Our son, he started the pink movement, the anti-bullying movement, he received a really big award. I had to have oxygen. I had, you know, and I couldn't stay the whole ceremony. I had to wait outside. So it's, I understand that feeling of missing out ‘case she was missing out and I was missing out. So we had, you had to try to make it up and up and then in other avenues that you can.
[00:16:43] Aaron Goodman: I understand. Adelia, these days you have two children and Sherry, you maintain a connection. Adelia, what kind of adjustments do you make in order to ensure that you can continue to be in touch with your mother?
Adelia: So, our whole household is scent free. We don't use chemical cleaning agents, We talk to the girls, then, and we explain why, you know, they can't have the same things everybody else does.
Sherry: Like scented markers.
Adelia: Scented markers is a big one. They like to color. And so we've had to say, you know, nanny can't have those. Nanny can't deal with the scent, and we don't want to make Nanny sick again, because it's not fun. We want fun Nanny, not unhappy Nanny. And that's the easiest way to explain it.
And I've had to push a little harder back at the daycare. They like to put whatever they want for sunscreen on my kids. And I've had to push back this year and say, no, you're going to use unscented sunscreen, period. Like, we're not putting sunscreen on that smells.
[00:18:01] If you can't put the unscented sunscreen on, then we're gonna have a problem, and she's just not gonna wear any. And they didn't like that. They did agree to put on the sunscreen that we were able to provide, that we were able to find, that was unscented.
You know, the girls are asking now, or starting to ask, because some of the girls at school, their parents are putting little dabs of scents on them so that they smell better, because they want to smell good, or they want to smell like flowers, and, you know, I'll say to Katelyn, we, we're not doing that, because we don't know who we are going to come in contact with that might, you know, be allergic to scents. And so we're gonna respect everybody like we respect nanny and just not wear them.
[00:18:46 ]Sherry: It's one of my pet peeves, is hospitals, how scented they are, but this one particular test I had to do, I think it was for my serotonin, and I had to have it at eight o'clock in the morning, and I was there, and the security guard went by me, my mother in law went with me, and the security guard went by me, and I said to Aileen, my mother in law, oh no. This isn't going to be good because my veins are closing off. I can feel it. I get pinching in my, in my body, in my veins, and it was, it's painful. And I said, because that, whatever she, that she's wearing, that security guard's wearing is certainly impacting me.
Then they called my name to go in for my blood work and, and I sat down and they do what they normally do and he couldn't get any blood and then he tried my other arm and he couldn't get any blood and I said, do you need me to go outside because I've been exposed to perfume and it pinches the it's like someone's in there pinching my veins off, and it's very painful. And anyways, he said he had to move me on, I guess it was policy or whatever, he can only poke me twice. And I said, well is so and so in the lab today? Because she's used to my veins. And she was, thank goodness. And she did my blood, the first, the first needle she poked me with, so this is my third poke, no blood. And so they've changed over to a butterfly. Butterfly is what they called it. And she only got enough in the bottom of that tube to be able to run my test. There was no extra blood. And she, then she went down and said to Adelia, I fully now understand what your mother's talking about.
[00:20:27] Aaron Goodman: Yeah, and Adelia, you mentioned that you continue to advocate for your mom.
Adelia: Yes. I have had many conversations with my supervisor within the hospital, and have asked them to bring up the fact that staff should not be wearing perfume. Because we have members of the public who are scent sensitive. She said, well, there's nothing we can do, we can't force people to be, you know, not wearing scents. And I said, well, that's not true because we have a scent free policy. You can enforce the scent free policy. Especially when it negates the ability to care for our patients, when you're harming your patients. We need to change things.
[00:21:22] Aaron Goodman: Well, it sounds like a good place to end this conversation. It's been really interesting and I think it'll be of real interest to a lot of listeners. So thank you so much.
Sherry: You're very welcome. Anytime. It's a life changing, a life altering condition. I wish I could say it was all in our heads because it would make life so much easier because they could have a pill for that. But it's not. And so you have to learn to find the positive. Of the condition, like any, if you have cancer, you have to find the positive if you want to keep going and I always say never give up.
Aaron Goodman: Thanks so much to Adelie and Sherry for sharing their stories and being so open. And thanks so much for listening.
You've been listening to the Chemical Sensitivity Podcast. I'm the host and creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit ChemicalSensitivityPodcast dot org.
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