Powered Air-Purifying Respirators: Kyle Higgins & Mariann Martin

Episode 30 of The Chemical Sensitivity Podcast is available now!
 
 Subscribe wherever you get your podcasts.
 
 This episode is called “Powered Air-Purifying Respirators.” 

It features a conversation with two women in the U.S. who wear Powered Air-Purifying Respirators (PAPRs) so they can continue engaging in the world with MCS.  

You’ll hear Kyle Higgins and Mariann Martin explore: 

·       How and when they started wearing PAPRs. 

·       Which models they use and how they adapt them. 

·       How they respond to questions and stares from family members, friends, and strangers.

More info about PAPRs (Wikipedia).

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The information, including but not limited to, text, graphics, images, and other material contained on this website are for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website. No material or information provided by The Chemical Sensitivity Podcast, or its associated website is intended to be a substitute for professional medical advice, diagnosis, or treatment.

Transcript

Aaron Goodman  00:05

Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and founder of the podcast. I'm a 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 Environmental Illness, Chemical Intolerance and Toxicant Induced Loss of Tolerance or TILT, and it affects millions around the world. As you know, many people with the condition are dismissed the healthcare workers, employers, friends, even family, countless people with MCS struggled to find healthy housing and get accommodation at work and school. And we suffer in all kinds of ways. The purpose of the Chemical Sensitivity Podcast is to help raise awareness about MCS and what it's like for people live with it. We featured interviews with some of the world's leading experts and researchers on MCS, and lots of people with the condition and we're just getting started.  If you like the podcast and want to support it, please find links on the website and in the show notes. Your help allows us to continue making the podcast and create greater awareness about MCS. Thank you very much. I really appreciate it. 

Aaron Goodman  01:20

This is Episode 30 and the title is "Powered Air Purifying Respirator Masks." Maybe you've wondered wearing a PAPR. A powered air purifying respirator mask, allow you to be engaged in the world and stay safe from chemicals that affect you. Or maybe you've worn a PAPR. The reason we're focusing on this topic is because as far as I can tell, there isn't a great deal of information about PAPRs that's widely and easily available. So I turned to a couple of people with MCS who have a lot of personal experience wearing PAPRs. You'll hear me speaking with two women with MCS who live in the United States. Both have MCS and have years of experience again wearing PAPRs. They talk about how effective they are for them and blocking chemicals, and how these masks have effectively allowed them to continue engaging in work and in social life. They also talk about different models of masks they've used and how others, including family members, friends and strangers have reacted and how they've met some of these challenging situations. 

Aaron Goodman  02:34

You'll hear Kyle Doughty Higgins who lives in New York State, she developed MCS in 2019. While working as lead scenic artist working on Broadway theatre productions. Kyle had to leave her dream career but has since found ways to be in the public and limited ways, often by wearing a PAPR. Kyle now serves as the scenic designer and scenic artist for Lehman College in the Bronx in New York, where she is an adjunct faculty member. She also works as a scenic designer for the Bronx opera. 

Aaron Goodman  03:09

Mariann Martin grew up in Pennsylvania in the US and spent most of her professional life in Kansas. She now lives in Pennsylvania again, Mariann was a high school English and college theatre instructor and her earlier healthy life. She was exposed to multiple toxic molds in the basement theater where she worked and developed MCS over 20 years ago. As with most people, her health collapse left her unable to work, determined not to spend the rest of her life housebound. Mariann eventually decided to wear a powered air purifying respirator or PAPR whenever she leaves her home. And Mariann says it's not a cure, and it took a while to get used to wearing it. But she says she's grateful that it has helped her live more independently for the past 17 years. 

Aaron Goodman  04:03

I hope you enjoy the conversation and find it a benefit, you'll soon be able to watch a video of this episode on our YouTube channel. We're a small team so it may take us a bit to get it online, but it will be posted. And there are a lot of other episodes up there and in audio format to you to check for you to check out on YouTube if you like just go to youtube search for the Chemical Sensitivity Podcast. And soon you'll you'll be able to see Kyle and Mariann showing their masks and you can see what it looks like to wear a PAPR. 

Aaron Goodman  04:35

Just a short note to say that nothing in this episode or in any episodes of the Chemical Sensitivity Podcast should be considered as medical advice. And importantly, do not attempt to wear a PAPR or respirator mask if you have asthma or any other breathing challenges. 

Aaron Goodman  04:53

We released new episodes twice a month. Please subscribe wherever you get your podcasts. Find us on social media just search for the Chemical Sensitivity Podcast, or podcasting, MCS. Leave your comments about anything you hear. And please share the podcast with others. If you'd like to read transcripts of the podcasts, you can go to the podcast website, which is chemicalsensitivitypodcast.org. Click on the episode you want, and then click on transcript. Or you can find as I said, the Chemical Sensitivity Podcast on YouTube and read captions in any language you like. Please leave a review on Apple podcasts. It's a great way to help others learn about the podcast. And if there's someone you'd like to hear interviewed on a podcast, or a topic you'd like us to explore, just let me know, email info@chemicalsensitivitypodcast.org. And thanks for listening.

Aaron Goodman  05:59

Thank you so much for joining me, Mariann and Kyle. It's great to connect with you. 

Kyle & Mariann  06:04

Thank you. Good to be here.


Aaron Goodman  06:06

Yeah. So Kyle, would you like to start us off and just say a little bit about yourself, for folks who are listening, perhaps where you live? And as much as you're comfortable sharing the kind of work you do or did and some of your experience with MCs, a bit of the history.

Kyle  06:22

Yeah, so I grew up in Seattle, and I came out to New York City for graduate school in theater set design. Interest. It's interesting to me that Mary and I and Marianne and I were both in theater. Let's see. So set design. When I graduated, I got into the Union for scenic painting. And I so for the last 32 years or something like that, I've been working as a professional scenic artist in the industry, primarily working in scene shops, painting scenery for Broadway shows. And three and a half for four years ago, I was hit with chemicals. I mean, obviously I've been hit all my life. But my body finally said that so enough, reacted started strongly reacted to something in the scene shop and it was a cleanser. So they had new company come in using a different cleaning product than had been used before. And it just took my feet out from under me, I didn't know what was going on. I had high anxiety, I could smell something that no one else was smelling. And finally, my employer worked with me and they changed to a different cleanser. And that seemed to resolve it. And then I think maybe, and that was actually probably five years ago, and then maybe a year after that. I think some I think people's deodorant and stuff like that just put me over the edge. Again, didn't know what was going on. And finally, I had a whole body rash. 

Kyle  07:58

Being in our industry, I know that you know, we're exposed to chemicals, right? And with the occupational heights, hygienist for our union, she has talked about this kind of thing that you can become sensitized, and evolve to my reacting to smells. So eventually, I finally said, you know, I need to take a month off of work, see if I can just calm my system down and see what happens. It helped. That helped a lot. I went back to work and the the rash started coming back a little bit but not as much. And by this point, I was in contact with an occupational medicine doctor at Mount Sinai, who said yeah, this is a thing. Now he would not say a name give a name to this, he would not say this is MCS, it is not environmental illness. But he said there are others like you this is this is a thing you are reacting to your environment. And he helped helped me get through a worker's comp case. 

Kyle  09:07

In following that up. I then reached out to I found a therapist who else also has MCS and she led me to an environmental medicine doctor who started turning myself around turning me around with supplements and, you know, testing everything and that as they do. So long story short, short ish. I am now working with a functional medicine doctor because she's only a half hour away from home whereas the Environmental Medicine doctor is five hours away. And she's continuing the work. She knows the Environmental Medicine doctor, she knows that gal does. And she said to me, I don't think I can cure you but I think we can stabilize you and I would say I am stable to this day. You know I am stable I continue my regimen. And when I joined that doctor, she said You are In a phenomenal job, which is I was following what the Environmental Medicine doctor did. Yes, it takes money the these people don't take insurance but the functional medicine doctor i will say it's cheaper than the Environmental Medicine. And she knows what I'm going through.


Aaron Goodman  10:16

May I just asked have you been able to keep working? 

Kyle  10:19

I went back to I had to quit the my professional employment so you know, leaving scenic art. It was incredibly hard. You go through the mourning as you can also mourning process to leave to lose your job and your family and your work family and doing what you love. It was my dream job. I floundered as I continue to physically help get healthier, I continue to flounder, and eventually the Lehman College is where I am working. Now. My husband works there. And when they found out that I was no longer working at this other shop, which took my priority because I was the union shop steward. So they finally said, Oh, well, we'll hire you come to sign more sets because I've designed for them off and on over the last 12 years. And so knowing that I was now really available, they grabbed me up. So I am now working as their set designer, and I just for the theatre department. I also just designed a show for a Bronx opera, who uses our theater as well. And then they about a year ago hired me to teach part of a intro to scenery. Scenery. So I'm teaching the set design.

Aaron Goodman  11:45

Okay, so we're gonna in this conversation, we're gonna this is a segue as we move into talking more about masks and in your experience with all kinds of masks, and we're gonna look back and ask you, I want to ask you how you been using masks in your in your work. But Mariann, would you like to share with us about your own about yourself?

Mariann  12:06

Yes, I grew up in Pennsylvania, and ended up working most of my professional life in Kansas. And I was a theater teacher and public speaking teacher, theater director, my theater, unfortunately, was in a basement and had water intrusion, and grew several toxic molds. I stuck it out as long as I could, and finally realized, if I don't get out of here, I'm going to die. And so I quit my job and left and realized I was reacting to absolutely everything. So that was 21 years ago. And so I've been dealing with MCS for 21 years. And I miss theater, but I don't want to go back to it because I now also have Chronic Fatigue Syndrome. And so I don't have the energy for it. But I am doing a little bit of work with teaching online. But before I found the teaching online, I was doing writing and photography for my local newspaper, just a small town newspaper, but I was wearing my respirator to do that job. And so I'd be happy to talk about that.

Aaron Goodman  13:18

That'd be wonderful. So maybe if you want to let us know, you know, you mentioned 21 years ago, over that time period, you've I'm guessing used a number of different masks. Did you start with you know, smaller masks, face masks, cloth fabric, respirators then kind of get us more different kinds. Did you start to use different kinds as time went on leading up to the full face mask? Can you talk about a little bit that progression?

Mariann  13:48

Yes, of course, I started with just the simplest mask, because I didn't really know what it was. But I knew what I had a mask on. I felt better. I connected with some online groups and found a mask called I can breathe, which is designed for MCS and it's a small mask that has some charcoal in it. And so that was helpful but I still really reacted to many many things if I went out of the house. So I was pretty much house bound for two years. I tried the big kind that has the filters here and the big but I reacted to the smell of this thing. could not get over it. I ended up wearing the I can breathe mask under this mask and then go out without reacting but I couldn't do anything like walking. Didn't couldn't get the air in.

Aaron Goodman  14:42

Yeah, so I think you're for people who are listening. I think you may be referring to like a 3M respirator.

Mariann  14:50

Right right, the kind that goes over your nose and mouth and I am very fortunate that I found an online support group fairly early and My My doctors and everyone, even other MCS people were basically saying get used to being in the house. And I could not handle that. So I found a woman online whose husband sold industrial supplies. And she sent me pictures of herself in the grocery store wearing this. And walking, she told me she could walk along the side of the road, I couldn't believe it. I couldn't believe it. But I was so desperate, I decided to try it. And I had enough of my old life contacts who were worried about me, I sent out a fundraising letter. So I could afford it. So I got one and had to make it work because it was everyone else's money. So that really spurred the the need to adapt and make it work. And 

Aaron Goodman  16:01

Yeah. When you talk about adapting, I think you're are you talking about off gassing, and it wasn't ideal at the start. So you had to just let it, you know, get used to it or let it sit there?

Mariann  16:14

I had off gas for quite a while, I had to figure out how to fit it to my head. So it didn't, didn't hurt my ears, figure out how to make it tighter. So the air doesn't come across my ears, just a lot of adaptations like that. And then I started having it's originally designed to be worn on a belt around your waist. And I started having back issues. So then I adapted again, to putting it on a cart. And I'll show you that in a bit.

Aaron Goodman  16:45

Yeah, that'd be great. Thank you. And Kyle, did you similarly sort of try out a bunch of different kinds of masks? what stage did you start to wear a full face mask? 

Kyle  17:00

Yeah, I also started with the I Can Breathe mask and I've got all my things here. So if you want me to show them, I can do that you want me to Sure why not? All right. So the I Can Breathe mask which Mary, and I Mariann and I both started with is a cloth mask like this. Right loops around your ears not unlike what people were wearing for COVID we were ahead of our times, but there is a charcoal liner. This one cut has vent holes, and there they also saw them without a vent hole. And the the events are a one way valve so you can breathe you breathe in and your air comes in through the charcoal mask,  which is covered by this guy. And then when you breathe out the valve open so that you can breathe out and it just makes it makes breathing easier. So I started with that. Being a scenic artist in theater, I know about respirators, and I have my respirator from work that I used to use in work so if I was spray painting something or using something toxic, which we tried not to do, I would go into the spray booth as well as wearing this. 

Aaron Goodman  18:13

Yeah. And just for people who are listening if I may, half respirator, it's black in color it has big filters, the round disc like filters that are gray and black. So it's quite a big mask visible highly visible.

Kyle  18:30

Yeah, so this was the half face respirator, there are a couple brands is a  3M is is common. This one is a Northwell Northwell oh I'm sorry, Honeywell North mask, a different manufacturer, slightly different material, I just found that the Honeywell North fit my face better than the 3M but I went through all of that when I was at work. So we had FIT test and do that in the industry, you are not allowed to let your employees wear a respirator without being sure that it's not going to hurt them and their health. So you have to be professionally fit tested and and know how to wear it and know how to clean it. And so on. 

Kyle  19:12

So, and just so for those who are listening, if you have a half face mask, and you want to make sure you have the right size, and unfortunately you cannot just try them on at a store. You want to have it over your face and hold your old hold a hand over the exhalation valve which is the little valve in the front center down low. That's the exhalation valve. You try and breathe, you'll be able to breathe in but you won't be able to breathe out. And similarly, you do the reverse. You put your hands over the external filters on either side of the mask. You breathe in and out. You'll be able to breathe out but not in and if you have that suction around the mask fitting into your face, then you have the correct fit. 

Kyle  19:57

So I knew this from work and I have this for more But I, you know, feel self conscious wearing it, it's, you know, like, you want to look like a bug, you know, I look like an alien. You know, it's it's hard, psychologically, emotionally to wear these things. So I held off I wear that I can breathe mask for a while. And I think it was probably about a year before I finally said, This is not cutting it any longer. And then I went to the, to the half face respirator, I have a second half face respirator, which will look similar. The only difference is that it has another attachment on the front of the mask, which is a speaking diaphragm. And so that allows people to hear me better when I'm wearing it. 

Kyle  20:49

So talking, it has a vibrating thing that allows you to to talk here a little bit or so same thing about fit testing, I did not have a problem with the off gassing. But I think I did wash it in baking soda. And I left out in the sun just to you know, do what I could even though I didn't. I was not well bothered by the smell. I know that I am less reactive than a lot of our cohorts in this disease. And from the half face respirators. Again, like I say, it was hard for me to start wearing it I finally started wearing it I started getting used to it selfconscious embarrassed, hurt. Now people are staring at you. People are turning around and looking at you. People try not to stare at you. It's it's, you know, goes all the ways. But I made myself wear it in a public situation. You know, if I was going to go in store by this time, I hadn't been going to the store for the year and a half prior. My husband was doing everything. Right. So he was doing all the shopping anything that had to go out of the home, he would do. But..

Aaron Goodman  21:58

Yeah, I hear you. Kyle, do you want to show us your full respirator?

Kyle  22:03

So I finally you know, again, being in industry, I knew about the PAPR, PAPR is P-A-P-R is stands for powered air purifying respirator, which is what Mariann wears, as well. And I thought you know, if I'm gonna get out of the house and have another job, it's going to be teaching I've taught in the past, that's going to be what I can do. I can't do that where and a half face respirator, I can, but I felt it. You know, it's a barrier between me and the students, and theater, set design construction, painting props, all that is hands on, I can't really teach that over the over the zoom. So I knew I had to get myself back into the physical space. 

Aaron Goodman  22:47

So this is just kind of counterintuitive, right? You know, like in my thinking, you know, the full face mask is more like it's it's a bigger setup, but in a way you're saying it allows you to be to have easier communication with people. And I'm guessing because your face is visible, whereas the the half respirator your mouth is covered.

Kyle  23:12

Right. And so I think, you know, I've asked my students I'm sitting, I'm down on stage, my students are sitting in the audience of a theater while I'm doing a lecturing. And I've asked Can you hear me? Yes, they, they're unless they're lying to me. They say they can hear me and I think yes, because they're seeing your full face. Inside the mask right. So what I have per description of people listening is the the 3M Versea Flow PAPR and when you call places you'll, they'll refer to it as a PAPR as opposed to saying powered air purifying respirator. It is on a belt that I wear around my waist. It is heavy, as Mariann said it and it's hard to wear because it's heavy. I have two different batteries for one is a four hour battery once a 10 hour battery. So when one battery runs out, I can switch out the batteries and keep going. 

Kyle  24:09

And then the mask is a paper what there's different kinds of masks I have the disposable masks that I wear, probably for six months before I just dispose of it and change it to a new one. Because the face masks the plastic shield on the front of the face mask will become scratched. And in my situation I get paint on it because yes, I am doing what I do. But so it's a paper hood that goes on over my head with elastic all the way around. I catch it on my chin all over so that it's covering like that. I don't have it turned on right now. So it's getting a little steamy in there. But as soon as you turn it on, it's creating a positive Air Force. So the air is being you have a battery pack here and a filter and it's the same filter that I have on the respirator which Is the organic vapor filters, which is what you need to take out the chemicals. The other filters without organic isn't going to do it for you.


Kyle  25:10

There is a there is a cartridge, which in my industry we call the defender, which covers everything organic and ammonia and something else I believe. But anyway, this is the whole the whole filter, the situation is here. So the the unit pulls the air in through the filter. And through this hose up to the hood that I'm wearing is a positive air. So it's, it's creating a bubble like blows like blows the hood up like a balloon, and the air is just escaping around the edges. But this is very snug, I've actually had to go to a large and send a small because the small was really choking me. So that's how that works. 

Kyle  25:54

Now I know when with COVID going on. That's why I want to talk to you as bad as with COVID that apparently these are not safe for other people when you are wearing it under a COVID situation because your voice your breath is still escaping with the air. So I wore this way anyway, I knew that I was not exposed, I knew that I did not have COVID. So I was not concerned about passing something on to my to my students or cohorts. But for the half face respirator to make it compliant for COVID You need to cover the exhalation valve, just like wearing a mask. So I would make a mask to put over that valve which hooks around these guys. So and in this case, this one, I have one that's made out of a hospital grade paper mask because when I had to do physical therapy, I had to wear this thing in there during COVID and they would not let me in without having something like that. And I said I cannot do it without my pap my respirator. So I will make a mini mask over the exhalation valve.

Aaron Goodman  27:10

Yeah. Oh, thank you so much Kyle for showing everything. And that's really helpful. I don't think we've seen your PAPR yet. Have we Mariann? To show us?

Mariann  27:21

Sure I'll turn it on and show you the headpiece first. So mine is old so the hoses discolored, but they usually come white. Kyle has the current model that's being sold mine is now considered obsolete. So I'm still finding parts for it on eBay and things like that, but I can't call up 3M and order one anymore. So this is the headpiece and as you can see the hose comes the clothes comes into the back where the head the base of the skull. And so I also do like Kyle does, hold on to the chin piece and then tuck it back like that. So put it on. And you can see can you hear me? Yes how much easier it is to be heard through this than the other masks that that I've had. I had some trouble with it be too loose here and then I couldn't hear anything. So I tucked it pulled it down so it's tight against the skin here. And then extra, no extra air goes out there but it's the same concept. The air comes clean air, clean air comes up across here and comes out down here. So there's always a positive pressure. I don't know anything outside unless there's huge wind coming this way but so.

Aaron Goodman  28:51

Very effective. Very effective for you. Yeah. Very helpful.

Mariann  28:56

I also like to dress it up a little bit with hats and things like that to make it look a little less medical. Because my because my back would take it wearing on the waist. I adapted it this way you see about the shirts. This is just a cart that carries luggage. And so use the belt that goes around the waist to fasten the respirator motor and filter on to the carts and put the battery down here actually I can carry two three batteries if I want. And then I push it along beside me as I walk. It keeps my arm is strong because to lift those many batteries is heavy. But that is what I've been using for many years now. And it works very well. I liked it because another reason I like it because I can sit down and I don't I'm not hurting anybody on the sides. I'm getting hits And I can put this in front of me or beside me or wherever it needs to be to get out of the way. So I bought a Honda Element, which is a car that has doors that open like this low bar in the middle, it's completely open space. So I can put this behind the scenes. And I can sit in the driver's seats. And it works very well for that. So. 

Aaron Goodman  30:27

So you drive with it?

Mariann  30:30

You can see perfectly why, you know all the periphery, you turn if it was a leaf, so yeah.

Aaron Goodman  30:35

Very interesting.

Mariann  30:37

If I don't drive with it. I get hit by the diesel fumes coming through the air system of the car, that kind of thing.

Aaron Goodman  30:45

Yeah, absolutely. Well, thank you so much for showing it. Yes, please go on.

Mariann  30:49

And I started making bad decisions in driving if I if I don't? Well, yeah. So we're talking about the psychological adaptation. When I first got it, I would talk to little kids, they would look up and see this thing and get scared. It looks, you know, a little like, something from a horror movie. And so I love little kids. And to have them cry when they saw me I get scared when they saw me was just really, really hard. I had to figure out what to do about that. So I finally realized that they, they need to see my face. So when I talk to a kid, I would tuck my chin quickly. So they would see my face instead of that white slash or mask.

Aaron Goodman  31:36

Underneath at the chin area. There's a bit of a way, kind of fabric II plasticky maybe material with holes in it. Vent area. Yeah, so Mariann is just tucking it in. So when you look down, children can see your face. And Mariann, do you know when you wear them? Do you wear the mask with the , the full respirator every time you leave the house?

Mariann  32:01

Yeah, I might wear a smaller mask to walk to, you know, at the end of the driveway to get the mail, which isn't very far at all. But I don't go far beyond my door without wearing it.


Aaron Goodman  32:12

And I think you were mentioning when we spoke before you live in a relatively smallish community. And so people, you know, you're the only person who wears one and everyone knows you. And Was that helpful, or kind of a hindrance in a way being the only one or, you know, how did you, how were you met by people in your community?

Mariann  32:36

I made it work for me because I was writing a personal column for the newspaper about being housebound, basically, and adjusting to MCS and recounting the many adventures through my travels in the past, that kind of thing. And so I had that platform to introduce myself to people and say, I'm the new person in town wearing a mask. And here's why. And that was really helpful. If the person didn't know someone else knew they could tell them. So that helped a lot. And I got a lot of stares. And a lot of people approached me with their solutions, you know? Did you try this? Did you try that? But after a while people got used to oh, that's that lady and, and then it was pretty, pretty easy in my community. I went to New York City thinking it was going to be very hard. Everybody there is weird. So nobody looked at me. 

Aaron Goodman  33:39

Yeah, no, that's great.

Kyle  33:41

So let me if I just pop in here, I wear my PAPR for teaching. And again, as I say, I'm not as reactive to a lot of people and I've been fairly stabilized early on. Luckily, I wear my half face respirator. If I'm in the backyard, and the neighbors are doing laundry, but if they're not doing laundry, I'm okay. I wear it to the store. I wear it. I wear it around the school or in the theater if we're doing tech work, where I may not need a respirator if I'm not around students and faculty, co workers I don't need to wear a mask I'm okay in the environment. But if I go to the bathroom I have to put it on. 

Kyle  34:21

And so I will wear the respirator just hanging off the bottom around my neck so I can quickly just slip it up over my my mouth and nose if I need to. But for teaching I wear the PAPR again so the students can see my face and they can hear me better. The downside is is it is heavy and as you know your I wear it around my waist. The first few days that I cut or a week that I had to wear it like seven hours a day. A lower back feet were really hurting. It's like okay, I've got to stop doing that. So I take it off when I can and wear the hat face when I can and at work, you know, the students in the faculty now know me, they know that I wear this and first day of class, I introduce myself say, this is what I'm doing. This is why I'm wearing this. And, you know, hopefully, it might tell the students about the dangers of wearing a lot of products. But they were a lot of products. And I said, You'll either in this white thing looking like a spaceman or a beekeeper, or you'll see me in the half face respirator, and this is to protect myself. And so they they accept that. And I know there are other students on campus who will see me wearing this who do not know what's going on. But I'm over that. But that said, in a different situation, if I'm around family, I don't want to wear the mask. So I personally am struggling with the emotions and psychology behind wearing a mask like Like you ever half face respirator or the PAPR around family because I know that some of them are going to be insulted by it, you know, assaulted time. Yeah, that they will think, Oh, you think I'm stinky? So you're wearing that.

Aaron Goodman  36:07

It's funny, and it's interesting how people take offense to it when it's not meant it shouldn't be like that.

Kyle  36:14

Yeah, exactly. It's like, this is not about you. This is about me being protected by the products in the environment, you know? Yeah. So, like I say, at work, I kind of I'm over it. I don't mind wearing these things. But you know, the challenge is the weight. Hearing the sound of the of the fan on the PAPR interferes my hearing the students or other people at times, so I have to call on people to speak up. By like I say the psychology behind wearing protective masking around family is something I continue to struggle with.

Aaron Goodman  36:52

Hi, this is Aaron just pausing briefly to say thanks for listening to the Chemical Sensitivity Podcast. This is episode 30. And we're focusing on powered air purifying respirators or PAPRs. You're hearing me in conversation with two women with MCS who have personal experience and a lot of knowledge about these respirators. They are Kyle Higgins and Marianne Martin, both live in the US. Please subscribe wherever you get your podcasts, we release new episodes, two times a month. And if you like the podcast and want to support it, please find links on the website. And in the show notes. Just go to chemicalsensitivitypodcast.org. Your help allows us to continue making the podcast and create greater awareness about MCS. Thank you very much. I really appreciate it. 

Aaron Goodman  37:43

So once you started wearing the full respirator, Mariann, were there any benefits, you know, we're able to do things you mentioned in life, anything work related that you were able to do that you hadn't been able to do up until that point?

Mariann  38:00

Well, just being able to go to the grocery store for myself was amazingly wonderful. And that I had to build up to being able to do things like that I could go back to church actually. And then I, the problem I have is that I have Chronic Fatigue Syndrome. So I can't do a lot of things for a long period of time. But I did try teaching again with with the full face mask on and the teaching was fine, the kids could hear me, my problem was the cell phones, you cannot get students to turn off their cell phones and keep them off for the entirety of a class period. So that kept me from going back and doing more of that. 

Mariann  38:43

But as far as the respirator went, that was they got used to that very quickly. And we're just as you know, poorly behaved as ever. I was teaching a high school class, bring your teaching, yeah. High School. But I also am able to like this is one of the highlights. I love going to conferences when I was professional. And with the online teaching. There was a conference near me for that company. And I got to go. And so this is the respirator with a piece of luggage on it full of all the things I need to survive a day out. And then you know, I went shopping and I carried a coat. And so it looks like I have a bag. It looks like a whole lot more than what I usually go out with. But just the fact that I could go to Washington DC to a conference center, and the conference was so cool and would not have been possible without the respirator. I was lucky that my sister lives near there so I had a safer place to stay.

Aaron Goodman  39:52

Yes, that's really great. But as you know, like the thing about travel is where we can stay right. Kyle, how about you? How did it change your life? Were there any things specifically that you could do that you thought you might not be able to?

Kyle  40:09

Well, when I first got the PAPR and, and I reached out to Mariann because I saw a picture of her on our on our Facebook site. And so I thought, Okay, I'm thinking about this, okay, I'm gonna reach out to Mari. And so she was my support system to start, you know, yep, there's another person doing this, did more research found what I wanted. And, you know, the fact that, you know, someone else had been out there and been so brave. So thank you, Mariann. It's it. 

Kyle  40:38

But like, so I thought I was going to be able to wear it on an airplane cannot wear it on an airplane, because of the battery. The battery is not to lithium ion battery not allowed on the airplanes cannot carry it. So I ended up wearing my half face respirator for the airplanes, which during COVID was challenging, because they did not want to let that you know, so my luckily my husband was traveling with me and could help do the discussion. And every time we got an airplane he had to talk to the stewardess is there, I have a letter from my occupational medicine doctor at Mount Sinai, which I carry with me. 

Kyle  41:19

And you know, thank God, you know, that helps, right? Because they would take it and it says, necessary and compliance with ADA. Right. So both systems, the PAPR and the half face have allowed me to be out in public, to go to the store to get on an airplane, to go to a concert. Now, I don't wear I only wear the PAPR at work, it allows me to teach and that allowed me back in the classroom, that allow me to be in public with more people for a longer time, because we're in the respirator is hard to wear for a long time. And so I can sit in, you know, theater technical rehearsals with incredibly fragrant opera singers in an entirely, oh, but I can do it, you know, and, and the students got used to it quickly, they explained it to him, they they accepted it, no problems. 

Kyle  42:16

But I have not felt the need for the PAPR in public. And, but I've also not gained the confidence to wear the PAPR. But the half face, I have gone to a couple of concerts, I will get tickets at the very back of the house in case I need to escape. And knowing that I'm going to change my shirt before I get into the car to go home. And I'm going to wash everything and take a shower when I get home. But it's allowed me to do that kind of thing. Then I same I go to, you know, concerts and things. And I do wear the big thing. And I put a coat or something over the motor, so that I'm not disturbing other people with the sound of the fan. That's that's not been my concern is that the sound of the fan, I thought would be too much too annoying for people sitting right around me. So I have not bothered with that. 


Mariann  43:16

I have a big case that I take along and just put over it. And muffles the sound a good bit. I also have problems with my eyes reacting to everything, especially animals and birds. Everybody in my family has animals in their homes. So with this on, I can visit them at their homes without it I wouldn't be able to. So that's been when people come to my house they know to come unscented, and cat and dog, all that kind of stuff. But when I go to their homes, there's no way they can clean it enough for me. And so that allows me to visit them.

Aaron Goodman  43:56

Yeah, it's really interesting hearing you both talk about your experiences. And hearing you I wonder if you have any thoughts about do you think it could be helpful for other people who may be you know, tuning in and listening or watching? You know, and if so, there are barriers, you know, and it's it sounds like for you and I experienced that too? I think we all do the the challenges of wondering or experiencing the stairs and the reactions from others. And for me, it's often a sense of isolation. You know, we're really othered and this, you know, we this will continue with this mask on. So A: Do you think it's how it could be helpful for others to continue working to be in the world and if so, what does it take? You know, are there some small steps that people can take to develop the confidence to do it to wear it and does it get easier over time?

Mariann  44:56

It does, it does. I developed really quick answers to what do you have that on for? If a little kid is asking, I just say it helps me breathe. And you know, that's usually good enough for them. If their parent asks, I usually say I have many allergies. And so this helps me leave the house. I can't leave the house without it. If someone's really interesting, I'll give them the full spiel. But usually just that it's helping me breathe is helpful enough for for curious people. I also make eye contact with anyone who's staring and give them a smile, and that that calms everybody down. I had people say, really odd comments about me being an alien. And so I just said, Live long and prosper. Because that's something Spock says on Star Trek, and it made them laugh, and then they were fine. Stuff like that. So but it's, it's I'm talking 19 years of using this that I've learned those check techniques.

Aaron Goodman  45:55

Yeah, yeah.

Mariann  45:56

I do think other people would benefit from it. And I'm sad that more people don't try it. But it does. I do know that in order for people to be to the point where they would like to do this, they've all tried everything else when their money is gone. And it's like $2000 bucks or so. 

Aaron Goodman  46:14

Yeah. 

Mariann  46:15

A lot of people.


Aaron Goodman  46:16

The cost, right, the cost, be an issue. And I always feel like if I had to do it to be in the classroom, as an educator, I'd probably ask my employer to cover the cost.

Mariann  46:29

Yeah. No price to pay for freedom. It's a small price to pay for freedom. But it's still a lot of money. 

Mariann  46:37

Yeah.

Kyle  46:38

When I was buying my setup, you cannot buy one filter at a time you buy a case of filters. So the filters are what $50 a piece, something like that. The hoods you can buy one hood, you have to buy a case of hoods. So between the machine itself, and then getting the additional equipment and the spare battery and getting you know, all additional costs. So yeah, it was about $2500 I think, for the whole setup. Now I've got a lot of filters, and I've got the backup batteries, and I've got a lot of it. So I don't need to buy anything more for a while. But that's a big outlay for a lot of people. 

Kyle  47:23

And I am very lucky and grateful that I have financial support from from my parents to help me some of these situations because, you know, I lost my job. And my husband's been very supportive. You know, he's been, do what you need to do to heal. But it allows me to be out there. And yeah, I think it's yes, it's hard. It's hard to get over the barriers of the emotional and the psychological and the physical. It's a much better physical barrier than you'll ever find this it's really the only physical barrier that's truly going to help people. 

Kyle  48:04

But I would like to warn people that if you have asthma if you have any breathing issues, please do not wear a respirator without medical support. Make sure your your doctor clears you physically to wear a respirator because it is hard on your lungs to pull the air through the respirator filters. The PAPR is supplying there is no pressure on your lung system whatsoever. It's a positive air, but the half face can cause stress on your body to breathe through it and do not run through an airport as I did was wearing it you're not supposed to do that. But I know that and I did it anyway to try and catch a plane. But please, please be careful your own health if you decide to try a half face respirator.

Mariann  48:56

Yeah, I do have asthma and I found the half face respirator was really hard to pull in the air through especially fast enough if I was walking or something like that. And with this one where it's you know, sending the air to you. You it's very easy breathing.

Aaron Goodman  49:14

Understood, may ask you do you think the technology will evolve? You know, you know, Mariann, you've been wearing it for h years. Kyle for a number of years. It seems like the technology hasn't really progressed but we know more and more people are going to develop MCS and other issues there's wildfire smoke increasingly becoming an issue. Pollution. You know, I think someone some a company is going to ultimately and hopefully soon develop a product that will be that won't be as heavy that will do a really great job that will filter the air for us, and we'll be attractive looking, more attractively and I'm actually, you know, surprised in a way that the masks you wear. It's really, you know, they don't look like a big deal at all. You know, I know there's a lot involved. But in a way again, they're less visible to my eye than the half respirator. But do you have any thoughts on like how you wish or think the technology may evolve as we go forward.

Kyle  50:29

It will evolve I saw, I saw the respirator that was an actually my dermatologist told me of this one. It's a like a half facemask half face respirator, it covers your nose and mouth, but it came around to the neck. And it was all built in kind of like a ring that you wore around your neck. And it was self contained. And I was very close to getting one until I found out that you cannot recharge the batteries. And it's all. So you have to plug in the unit to recharge it, which means I can't wear it while it's recharging. So you know it visually, less of an impact, talking would still be an issue because you're talking through that face. But I think there's as the need for people to have have the public to have this kind of equipment, I think they will evolve. I'm afraid it will be a long time just because there's not enough of us out there. Because our disability is not recognized by the mainstream medical field. Because air pollution is not so bad yet, that we can't leave our apartments to go outside. For normal people. It was I don't think there's enough of an industry yet for them to really march at that quickly. But I think it will happen but it's gonna be a while I think.

Mariann  51:55

I was very excited over COVID to see all the experimentation with masks. I was like this hopefully will lead to something really good. I did not see any masks that was good for COVID that I could wear because the filters were never strong enough. But just the fact that someone was looking at that and looking at something for people to wear every day to go to work and such made me excited. I hope that it it has. It has a future.

Aaron Goodman  52:23

It's been wonderful talking with you. Thank you again for taking time and for everything you've shared. I think it's going to be really valuable for people.

Mariann  52:29

Thanks for doing the podcast. 

Kyle  52:31

Yeah.

Aaron Goodman  52:31

it's a pleasure. It's a labor of love. That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Kyle Higgins and Marianne Martin for speaking with me. The podcast is produced by me Aaron Goodman and Raynee Novak. We release new episodes twice a month. Please subscribe wherever you get your podcasts. If you like the podcast and want to support it, please find links on the website and in the show notes. Your help allows us to continue making the podcast and create greater awareness about MCS. Thank you very much. I really appreciate it. 

Aaron Goodman  53:07

And find us on social media. Just search for the Chemical Sensitivity Podcast, or podcasting MCS. Leave your comments about anything you hear on the podcast and please share the podcast with others. If you'd like to read transcripts of the podcast, you can go to the podcast website, chemicalsensitivitypodcast.org. Click on the episode you want and then click on transcript. Or you can find the Chemical Sensitivity Podcast on YouTube and read captions and any language you like. Please leave a review on Apple podcasts. It's a great way to help others learn about the podcast. And if there's someone you'd like to hear interviewed on the podcast or topic you'd like us to explore, just let us know email info@chemicalsensitivitypodcast.org Thanks for listening