WFB Live! - Elizabeth & Maria
Elizabeth and Scott tried for over a year to conceive before becoming instant parents of 3 girls after his sister got sick. When the girls moved away, they started trying again and years of frustration followed. Maria and Kevin were barely 25 when they landed at a fertility specialist, with options they weren't interested in. After randomly meeting in DC, they combined their passions and conceived of something to help everyone going through what they were. Our live episode was recorded on stage at our launch party in Philadelphia on August 9th, 2017 at We Work in Northern Liberties.
The ART of Infertility is an international arts organization based in the U.S. Founded in 2014, we curate innovative and emotionally provoking art exhibits to portray the realities, pains and joys of living with IF. We also design engaging curriculums to host art and writing workshops. We plan educational, outreach events. We advocate for infertility rights. Most of all, we provide support for those living in the shadows of infertility. Through art, we break the silence around reproductive grief and push back against common misconceptions. We invite you to join us in our fight to make infertility visible.
Photos from the WFB Live Event and Launch Party - August 9th, 2017
Transcript
(transcripts are for purposes of searching and are approximations at best)
Hey everyone, this is Steven Mavros and this is a special edition of Waiting for Babies recorded live at our launch party on August 9th at We Work in Northern Liberties in Philadelphia. I was joined onstage by our associate producer Laura Mullin and our guests for the evening were Elizabeth Walker and Maria Novotny who are the co-directors of the art of infertility an arts organization that curates innovative and emotionally provocative art exhibitions to portray the realities pains and joys of living with infertility. Elizabeth founded the organization back in 2014 after going through a long struggle with infertility. And Maria joined soon after. This is the story of how they got their.
So I kind of want to first of all thank you all so much for being here. You guys are fantastic my family my friends are here and it's awesome. So I'm very very thankful to have with me as our guest Elizabeth Walker and Maria Novotny who came all the way from Michigan and Wisconsin to be here. And I'd like to bring Elizabeth up on the stage now.
You just have to turn the microphone on and I will. Welcome.
Thank you. Thanks for being here. So excited to be here.
Essentially we are going to go through this like I would normally on the podcast I'm going to just ask a lot of questions. We're going to start with basics and kind of work from there. I like to start back in the beginning when you first started trying to get pregnant and trying to conceive and you got married when you were 26. And you waited a few years before I actually started to try. But I know you're a planner. So even before you started physically trying you already had some books and even had a funny idea of like when your timing should be. Yes so my husband I got married and we knew we didn't want to try.
To add to our family right away we were pretty content adjusting to marriage and just doing our thing. And I think I was ready probably a couple years before my husband was and we talk about it pretty regularly. And his solution because he didn't really feel like making a decision about it was for me to just decide when I felt the time was right and I would just go off birth control and not tell him and that he would just be happy like just be surprised and happy when it happened. So I didn't think that was a good idea at all. That's something terrible to me. So we didn't go with that plan but I did. I started doing some research and reading some books and talked
to my doctor and took prenatal vitamins and you know figured out all the things I needed to do before we would start trying to conceive. So the kind of the last plan was that my favorite tampons were being discontinued like they were no longer going to be available. And when I realized this I thought I better stock up because they're not going to be Bill any more. And I bought a couple of cases online and had them shipped to my house and then I thought OK well how long will these last me like maybe my plan should be when the tampons are gone. That would be a good time to start trying to have that baby. So I kind of did the math and I told my husband I think this is a good plan and he kind of looked
at me like I was completely crazy. But he's like OK so that's what happened when the two months were gone in less Fox's open. Like OK when he is gone we'll try. I feel like.
I feel like some women I know like some women have kind of a background of fear that they're going to have trouble getting pregnant but that doesn't sound like it was you know it wasn't at all.
I really felt like I would be some kind of like pregnancy overachiever like I would just decide to try and it would happen. I think I in my life I'm used to being able to set goals and work hard to make you know those goals reality and I thought that pregnancy would be the same. And it turned out that it was not at all.
So you started tracking your cycle and you started doing that for like about six months or so and you started noticing that something was a little off.
I did and I figured you know from my research I knew that I could take some time. Going off birth control before my cycles would regulate but it was pretty clear from charting that my charts were all over the place and they're supposed to kind of follow this nice pretty steady path and then spike and then stay up. Mine didn't. None of that. They were just kind of all over the place. So I knew pretty soon that something was wrong. It didn't feel right to me. And also the time between elation and my next period started or the luteal phase was shorter than it should be. So I would
start my period before any potential embryos that had been created would have time to implant essentially. So I feel like right around the time that you were maybe thinking or contemplating about finding a specialist or at least seeing your g y then life kind of took a little bit of a turn on you and.
Your sister and I got sick and suddenly you found yourself thrust into parenthood.
Exactly. So my sister in law got sick and I remember when I was out of town visiting my sister and my husband called and said Shelly says she's dying and I was like that's completely ridiculous she's not dying like she's being completely dramatic. She was always very dramatic anyway and I was like whatever it's fine I'll come back for my vacation I'll figure this out. She's not dying. That was Halloween and by her birthday on December 1st she was essentially in a medically induced coma. So she was right unfortunately and she had just gotten divorced
and her ex-husband worked midnight so with their 50/50 custody split the girls she had three young girls who were just four six and nine at the time came to live with us on her days along with their dog. So we went from being this you know. Couple carefree with a couple of cats to parenting and having a dog overnight. And well that was a horrible horrible circumstance that. It was still is one of the best experiences in my life having the girls in the house for those months and parenting them and and doing all the things that I want to do as a parent you
know. Tell them to brush their teeth and comforting them after a nightmare and all those things the small things that are so important to me.
How long. So they leave and how long did it take for you guys to get back to it like did that make you want to pause or did that make you want to keep trying.
Yes so Shirley ended up dying and the girls ended up moving to Minnesota which is about 600 miles from where we live in Michigan. So it was completely devastating. Natalie was my sister in law gone. The girls were gone. I couldn't get pregnant. And a lot of people's solution for me to deal with my grief was. Oh we'll just just have a baby like you just need to have a baby of your own and it'll be a happy thing. And they didn't know that we are. We've been struggling that we've been trying to conceive for at this time already.
At least a full year. And it was it was a struggle so we needed to take some time from that to regroup and grieve and figure things out. So it was about two years into dealing with infertility that we finally did go and get tested.
You were you know you were basically dealing with the grief of all of that you were dealing with the grief of infertility you were dealing with the grief of losing your sister in law and losing your girls essentially.
So you make it to a fertility specialist and they come up with the idea that they have a plan for you was there. It sounds like you guys went kind of into treatment you started doing some basic medications like coma pain and then you started doing insemination.
What happened. Yes I started off with my gonna ecologist again I probably would have gone to a specialist sooner but we were still kind of recovering. So I did five cycles of Clomid which was hopefully going to make my relations stronger because my obligation was weak it was weight weak it was not going to result in a baby. So the hope was that if I went on this medication we'd get my. My ambulation date moving sooner and my cycle instead of leader. And make it a stronger better cycle. Did it work for you. It did not work. So my doctor
really wanted us to try six times but I was like it's been five it's not going to happen let's just move on to the next step but we were ready to go see a specialist. So we moved on to a reproductive and technologist and tried some inner inseminations interviewed or inseminations with a hybrid cycle so I was taking oral medications along with injectable medications.
How did you do with the hormones and all the medication.
I honestly didn't have a problem I think I was pretty easy going and we did talk and confirm that with my husband a couple of weeks ago he said I was OK. So really I felt like it wasn't a big deal.
I was going to say husbands don't always say that but I usually just tell them to shut up. So I really felt like it really wasn't.
That much of a problem for me being on the medications. Right. But you were also.
Dealing with other things and there was not only the mental cost of using these hormones but there was a physical cost for you.
Right. So I was diagnosed with fibromyalgia about the same time I was diagnosed with infertility and it's a central sensitisation disorder which basically means like all of your signals are on overdrive. So any pain signal is amplified. And he's and he's of your senses are amplified. So I was dealing with a lot of chronic pain and fatigue. And the solution to deal with that was to start taking some medications that I could not take because I was trying to get pregnant so I couldn't take the medication to make me feel better. But. I needed these other medications to try to get me pregnant. And those medications
were making me feel worse. So it was kind of this vicious cycle of dealing with pain and not getting pregnant and just trying to manage all of that.
Now you had one fun coping mechanism which is that you know this thing takes time every time you try to cycle the month. And at the end of the month when you get your period it can be devastating.
And you had a little trick that yeah it worked OK for a while. But I would go every time my my period started I would go shopping and I would buy a new piece of clothing. And usually it was a top that because I didn't want to buy pants because the goal was that I didn't want to be able to fit into my pants but a sweater might give you a little more time to wear for the first trimester.
So I would go and buy usually a new sweater because it was winter at that time when it started doing this and soon I swear my drawers were just overflowing with sweaters. There were just too many clothes to contain. But I did find it was helpful because it was kind of like my reward for failing every month. In some ways and giving me something to look forward to if I didn't have a baby at least I would look cute. Mine is water I guess.
So at this point did they start talking about moving on and going yeah yeah.
After we finished the for you guys the next step would be IVF. My doctor did did say that if I wanted to we could do an exploratory laparoscopy to do a surgery and look around and check things out before we moved on to IVF. And I felt for me that would give me the most information to make a decision about moving forward and possibly eliminate any problems that could exist that might affect IVF in a negative way. So before moving on to IVF I wanted to do that.
Did they find anything with the exploratory surgery.
They did. They confirmed that I had endometriosis which can also cause problems with conceiving and I found a couple of polyps but basically it was the endometriosis and clean that out and didn't find any other issues so with everything cleaned up and ready to go. And the thought that I would move on to IVF when I was ready wasn't quite ready at that time. But that would be the next step if we decided to move on.
Now you were in recovery for a few weeks from the surgery. Normally you can take like a week or two for people to kind of get back on their feet. You seem like you had a unique way to deal with that and to get you through the time.
Yes so normally I would have been off for a week from work but because of my fibro my fibromyalgia my doctor wanted to give me more time to recover. So I was off work for three weeks and home. And you know you start to feel better but your can't do anything still and it's kind of frustrating. So I really felt like I needed something to do. And my solution for that was to go and buy some art supplies. And so I had my husband drive me to the art supply store because I couldn't drive. And I picked up some papers and some canvases and some paints and thought I'll just go home and like make something. So I took everything home and I started ripping up paper and take apposing and onto
canvas and painting and like using beads and it was just a really great release for me because it just felt like something I could do when I was waiting. And it was helpful and it feels really good to rip a paper. I highly recommend ripping out paper.
So was it at this point that you had an idea that art would be a good thing to keep doing or to help other people.
Yeah when I made that first piece it kind of became something that like an extra tool in my toolbox I tried to rely on a much different tools through out dealing with infertility. So it was a new tool I had. And I really felt well dealing with infertility that it's so invisible you know it was impacting me in such a huge way it was something that was rocking my world and consuming my every thought. But there was nothing that was showing that on the outside. There was no way to to show that. And I felt that art was a way that I could create something that would be tangible and that would be something that was physical proof of my infertility experience.
And at first it was just kind of for myself and then I realized it could be a really great tool for sharing with my friends and family to kind of give them a clue as to what was going on in my life too. So I just started creating some pieces around my experience.
At this point. You're about to go through IVF and they put you on hormones. You do all the injectable medications they basically take your ovaries and turn them from peas to you know golf balls and they. Go in they take the fall they take the eggs out and that is a surgical procedure like basically you're under anesthesia. They're taking a needle kind of piercing through the uterine wall. Fine. Yeah I'm like a good time right. And most of the time people go home and lay on the couch for a day maybe two days and are OK. But you didn't necessarily have that happen.
You know that's happened to me. I I left and I was feeling ok. I remember waking up her man decision saying like yeah this was so easy I could do that again no problem. But we actually had decided already that we were only going to do one one IVF cycle even though we knew that wasn't the best. You know like a recommended plan because it's likely not to succeed and one cycle for our family we felt like it was the best fit. So we had already decided that we would do one cycle and any embryos that resulted from the cycle we would transfer and then our paths at least to genetic Parenthood would be done.
So we had already decided one was it but it was pretty good. However as the day wore on I was feeling really like a lot of increased pressure and a lot of pain and I thought it was just like Gask. They can say I can be a problem after the procedure. But it was pretty clear by the evening that that was not the case. And I ended up in the E.R.. With internal bleeding and ovarian. Oh very in 2000.
And when I explain what I know what I know for sure.
Yeah. So basically you like your your ovaries here and the tubes here and it's supposed to be in a certain spot and it just kind of like it was surrounded like flops over. So it's. Well and that's what I envisioned like I'm a visual person like in my mind my ovary was like flopped over. Well probably because my doctor also said she said later because they had to go in and remove the blood. And by that point actually my ovary had gone back into the right position. But she said there was one one follicle that was kind of bigger and it kind of flopped over. So that's I mean I don't know maybe she didn't know that I was
recovering. Who knows. That was pretty drugs and had done a lot of pain.
So how long did it take to like did the pain go away immediately or were you the really severe pain went away as soon as the surgery was over.
But it was a pretty rough recovery because my stomach was so enlarged from all of the blood that was in my abdomen that I had a lot of bruising and it took me a really long time to recover from that.
Right now just so everyone has an idea this is not a normal thing that happens around. IVF it is a really rare complication. You just happen to have all the luck. I'm very lucky. So how long after that. Did we. Did you feel like you were actually ready to go to the next step of IVF or they actually put the.
Yes. I mean they were treat the eggs and they created embryos and we had. Three beautiful day five blastocysts that were gorgeous and wonderful. We ended up doing a transfer a couple months later so we didn't have to wait too long. Just give me a couple of months to recover and then transferred two of our three embryos and I surprisingly got pregnant. I was not at all prepared to get pregnant because that had never happened before I'd never seen a positive test. I never I took Actually I took a more pregnancy test when I was on birth control than I did when I was trying to
conceive because I was I thought it like when when you were younger and you were trying not to get pregnant. Even when I was married and trying not to get pregnant I was like I was afraid I would be one of those people who got pregnant and didn't know. And so I would get freaked out and by tests every now and then and be really like OK I'm I'm not pregnant. So I actually took more tests before I tried to you know have that baby than I did after that came out right. So my husband I were shocked that it was actually positive and I had maybe to the next day which is the blood test to confirm pregnancy. And it was confirmed my numbers were at a 30 which were
low but not crazy crazy low so we just we're going to wait for the next test and see how things went and hopefully that would increase and double and unfortunately that wasn't the case when I had my next blood draw the numbers had gone down. So it was clear at that point that the pregnancy was ending.
And sometimes what they do afterward is kind of to go in and explore basically to see how the uterus is doing after a miscarriage. And for you it sounds like something they found things that made it even harder.
So I had my my history Scobie which was to check out my uterus to make sure I was good to go for my next transfer to transfer the final embryo. And at that point we found out. That. When my doctor was looking around the screen she was like oh. I'm surprised to see this and I was like oh what is it a surprise that doesn't seem like a good thing. But it was leftover products of conception was essentially a pregnancy tissue. So my doctor was surprised she said Oh you must have been a little further along than we thought you were. Here's this leftover tissue. And then she kind of rounded the
corner and there was more. So. It was not 100 percent evident but likely I asked you know does the fact that there's tissue in two different spots of my uterus mean that it was twins that actually both embryos implanted. And she said well we can't say hundred percent but yes likely that is the case. And to me seeing that on the screen just totally rocks me just having that visual look at the burn and to my memory seeing what that looked like. And from there I really felt like I needed to take time and recover. So I went home and I told my husband you know we can either stop treatment totally altogether and be done
or I need to take a break. So we ended up taking a break.
And during that break you you had been doing art before. And I think at that point you kind of had an idea for turning that art into something more. And created what sounds like you were. Enough are to actually show and create an expedition.
Yeah I it was making more and more pieces especially around the miscarriage and other things that had happened and I knew from starting to attend that support group that there were some other people doing the same thing. So I reached out to a local museum where I live in Jackson Michigan called Elish Art Museum and asked if they would be interested in doing an infertility art exhibit. The idea being that it would contain artwork created by people at different stages of their journey along with some portraits and interviews to explain what the infertility experience is about. And they said yes so we went ahead to move forward with that.
Did that help a lot just in terms of give you something to look forward to. Did that make you want to go back and and keep treating like that.
I really felt like I needed some time so we took we took a whole year off. And then when we well almost a year and when we were back actually transfer the last embryo the month before the exhibit opened and that final transfer was unsuccessful. So at that point you know I was putting things a bit together and really at a time when I wanted to crawl up and crawl on my couch and not talk to anyone I had to like create this exhibit and collect artwork and like talk to people and those really horrible. But in the end it was really the best best thing I could have been doing at that time.
So you brought up that you had a support group.
And what was was that something you organized or was that something that was or it was a pure lead support group by resolve the National Infertility Association. And I was initially going to the group and then later hosted it when the person who was hosting took over or actually need to leave. So I was attending and running support groups and I had the opportunity to go to Advocacy Day in Washington D.C. which is an annual event to lobby on Capitol Hill for improvements to infertility legislation that will help people build their families either via treatment or
adoption.
So I decided to make the trip to D.C. with their what with what was about advocacy day that really spoke to you like why did you want to advocate or why did you want to.
I just feel like you know through doing the art and doing the community event I just felt like there was so much more that I could be doing I really just wanted to be in the community once I was comfortable talking about my own experience through creating art around it and joining with other people and kind of figuring out what infertility meant to me. I wanted to raise awareness and other people and just make it you know kind of bring it out of the shadows so it's not so. So closeted and so so isolating. So we're going to take a pause here and switch over and I'm going to bring up Laura Mullen and Marina Vonni.
So I'm going to assume that compared to the majority of the people here in this room you and your husband actually met in high school. Yeah.
I met my husband when we were both 15. So I've known him for now a little bit more than my whole life. And trust me. I'm not really always proud of being high school sweethearts like it's like a secret thing. I'm like yeah we're high school sweethearts it's kind of like I never thought I would be that person. To be honest with you because he was just this annoying 15 year old boy at the time but the kind of a joke that it's been around in my family a little bit and has been when I turned 18 my parents came home from their anniversary and told me my sisters and I that they were pregnant and that they were going have a baby. So there's an 18 year old
difference between me and my little brother and my husband kind of grew up seeing my mother pregnant and then the birth of my brother and everything like that. And we all come from really large families so Kevin is a large Catholic family.
He's the oldest of four.
And so at what age did you all get married.
We got married when we were 24 years old. So pretty much right out of college. And when we got married essentially my husband took a new job. We were both from Wisconsin and it moved us to Michigan. So at that time we decided to buy a house. We made sure that the House had multiple rooms because really our plan was right away to try and get pregnant. That was something that we kind of grew up it was part of our culture. Like I said his parents got married they had kids right away. My parents got married they kids right away. That was kind of something we were supposed to do.
And so how long we all trying to get pregnant until you realize that you should seek medical advice. Yeah.
So like the little bad Catholics we were we actually tried it before we're married. I know my parents will die. They hear this now. But we did it and it was you know unsuccessful right away. And that actually remember like three months after our wedding I was like wow this is weird that I'm still not pregnant but we kind of just were like oh whatever we're moving we'll figure it out. And so about a little bit over a year we started to think maybe something's up something totally right.
And what was the relationship like during that first year of marriage and then trying with your husband. Yeah.
So actually for the first six months we lived in a hotel which was hell. And I honestly feel like if we got there that we could. That's how we got there and fertility. I mean it was a one bedroom hotel and he was kind of doing this training thing for his job. So that was really hard and stressful. We were trying to get pregnant nothing was happening. We did not have our own space whatsoever. And then we finally moved and got our house. But it was also really isolating because we moved to this new state. We didn't know anybody and our family didn't get it. I mean we didn't even know how to talk to them about this because it was always assumed we would just get knocked up like that's what would happen.
So it was really kind of scary. And I remember a lot of different times just driving back after going the grocery store and seeing like ladies there in the middle of day I was there in the day you know either pregnant or with their kids and I would just be really devastated and upset. And I remember one time actually came home and I left all the groceries in the car and Kevin was in the kitchen and I went to the bathroom quickly and I got my period and I came out and I literally just collapsed on the floor and just started crying and bawling and was so upset that my body couldn't work and was not doing what I had always wanted it to do. And
I actually ended up out of that experience creating a peace that over there called the House that kind of talks a little bit more about how he bought this house and how it always had images of this extra bedroom being this baby's bedroom and having Kevin come home and make dinner. And we had a little playroom actually set up. Off to the kitchen and not knowing any more what that it would mean for us. And what that would mean for us especially living in a place that's totally new and we didn't really have anyone to go to or talk to about.
So at the age of 25 you then went to a fertility clinic. What was that like.
Yeah. So around that time actually I think right after I had this like little breakdown Kevin was like we need to go make an appointment. So we actually started going to the gynecologist said first like maybe midway when we were trying to get pregnant I was using our relation test everything was coming back fine. I was getting my period nearly like on the day all the time. Kevin when we went to the gynecologist they set him up with a urologist appointment and he got his sperm tested everything came back for that pretty inconclusive. So then we were recommended to go to our local
fertility clinic and we did that. And I remember in that consultation it was pretty much recommended that because those are ovulating so regularly at the time and because of his sperm test being inconclusive that we should move right away to IUI and her and it's in motion which we just learned about. So. From that experience we kind of left that meeting. And I remember driving back to our house it was only about 10 minutes. And I remember thinking it was quiet right away if I should talk to him about what he was thinking. We were kind of just trying to
process what that actually meant to do I you I. And without even going through clomid or hormonal treatments or anything like that. And. I think right away I said I don't want to do that. And he looked at me and he said Oh good I don't want to do it either. And I was like oh god thank god it feels that way for us. I think it was just like we were only been married for about a year and a half. We had always thought that this is what it was going to be and we now didn't know what our life was going to be like what we wanted to do with it. And even if treatment was right we were never really anti treatment. We just didn't
know if that's what we wanted to do. And we just didn't feel like at 25 we could make that decision. So we kind of decided to just walk away from that at that moment.
And so I feel like a lot of people have a difficult time understanding that. So when you tell people that you are not going to go to treatment they don't really know what to say. Yeah. Have you had many. Situations with family or friends strangers and how they react.
Yeah I mean that's something that continually comes up. So we put the paws on treatment and we still put the paws on treatment. We haven't really done anything about it. And instead we really try to work on ourselves and on our relationship with each other. And also just figure out I mean honestly do we want to be married to each other. I mean we got married to have a family. So what does this mean now. And so explaining that to other people has been challenging recently in fact we had recently told one of our really good family friends that we were maybe thinking kind of about adoption and immediately what they said was Oh that's so great honey you know you'll
finally know what it's like to be a parent you know. I know you guys think you're great dog parents but to parents a kid it's just something totally different. And we came we came home and Kevin was like I know she means well but gosh that really hurt. And so those comments still really hurt in lots of different ways. Being the oldest of children on both sides of the family I mean my brother is 12. He comes up with us he has like little getaways in lots of ways we feel like we're raising him especially with my parents being older we know that we're going to be involved in his lives very differently when they get older as well.
And my husband's also a guardian of one of my cousins who has special needs. And so we're also being parents in different ways. And so sometimes it gets difficult to kind of translate the ways in which parenting is not always visible but alternative parenting really does exist. You mentioned the word treatment and having an issue with.
Foregoing treatment what's part of that word that doesn't sit well with you. Yeah.
I'm I'm not anti treatment and I think I said that a little bit. I mean and neither is my husband. I think for us more so a lot of the narratives around infertility are focused around infertility treatment what treatment people did how people went through and really struggled tried to beat their infertility in lots of different ways. And for us I think that does a disservice to really treating the other issues that kind of surround the experience of infertility itself. We really felt like our marriage had to be a lot stronger and we actually kind of thought it was a good thing not to necessarily be able to get pregnant right away because if we brought a kid into
everything it might have just collapsed some things instead of gave us a chance to really work on what we wanted and build a new foundation. But I think treatment also has some connotations where when we go in we do legislation there's a lot of legislation around treatment and advocating for treatment and while that's great and that work needs to be done sometimes it doesn't really make space or options for other sources of resolving your infertility. So the idea that you can choose being childfree and that's a valid and legitimate choice that should be recognized or adoption or surrogacy or other forms of family building.
So during this time of not going to treatment you kind of found it as a time to rediscover yourself and to understand now where you are going with your life. What was that like.
Yeah. So like I said we stopped me so kind of stops were like weird still pods kind of limbo phase.
But we decided to work on our careers and kind of go full forward on that. So I actually ended up enrolling in graduate school and my first initial idea was that I was going to go and learn how to be a teacher and teach writing at a college level. So when I got my master's and during that time my whole plan was kind of like to secretly still get pregnant like I still didn't believe that I couldn't get pregnant so I was just going to go for it without you know thinking about it like that. Two years passed and I was still not pregnant. And then there was this
option. What do we do. Should we just stop now. Maybe we can go and do treatment and you can I can teach or do I do something else. And around this time I was starting to do a lot of reading. I was in a queer like Barry Tepic class and I was making a lot of connections between the ways in which your body kind of becomes reoriented. There's a lot of re-orientation scholarship to clear scholarship and the ways in which I felt my own body and my own sexuality be even be re-oriented because of my infertility and because of that I decided maybe I want to continue this and think a little bit more about
other ways that people are composing new meanings for their bodies through infertility experiences. So I decided to enroll and get my Ph.D. doing something around what I was trying to call rhetoric's of infertility which took me a while to figure out. But we'll get to that part later I'm sure. Yeah.
And then so during this time me you and your husband were also trying to look for a community like a support group for families and couples in that area.
Yeah. So that was part of taking this break was to not figure out how to fix us but to figure out how to build the community and fix this marriage that we had together. So we decided there wasn't a support group in our area to run a couple support group. Now this is. Kind of Different. More support groups the one that lives to an also ran. We're mainly focused towards women but we really wanted a space where we can meet and network other people and to really understand what they are choosing how they are going through different options and kind of as a way to figure out maybe what to do. So we started it and it was great couples
came out. We developed great friendships with them but slowly it got to be a little bit of a challenge because most will be doing treatment and then it was kind of awkward to figure out how I could be a leader of a group of someone who never did treatment herself. So it was a little bit difficult and a little bit of a challenge but we got through it by kind of networking and allowing other people to come in and talk to that group.
And then so what brought you and your husband then to go to Washington.
Yeah that was a lot of what brought us to Washington is that I felt like we were running this group and we needed to figure out how it is that we could connect them to other people who had similar stories because we didn't have those stories.
So we decided that we would go and try and figure out if there were other people that people in our group could talk to.
And so that's how we kind of ended up in D.C. everybody. So you guys met in D.C. at Advocacy Day for the day. So tell me about that.
Yes. So I traveled with a friend of mine from my support group and I had heard rumors about Kevin Imrie and these people on the west side of Michigan who were running this group. But I didn't know that they were going to be AVCs it or not. And it turned out that they were. And we all met up and I pretty quickly connected with Maria. We seemed to have a lot in common talking. We realized that we at one point in our infertility journey is both like chopped up all of our hair and I mean like I shaved my head. I it was part of him the impressive grieving the loss of my sister and I just felt like I
needed some outside present like again a visual representation that I had changed and I was different and it was a theme for Maria and in some our way so we connected on that and the fact that we were both using creative outlets for our infertility journeys. And it was really pretty incredible that we met up in D.C..
Yeah. And when I met this oh that's Mike doesn't like me. When I met Liz I was really like I said looking for someone to kind of be a support system for me.
I have been a support leader yourself lots of times you think oh they don't need their own support systems. But I really connected with Liz with everything she was going through with running her own support groups and then through all the creative outlets that she was exploring through art. I was doing it through creative writing that we just kind of clicked. So this was around the same time that you had your art exhibition back in Michigan.
And you after advocacy day there was a little bit of time you actually were able to get there and you got to see this artwork. What what kept you guys coming back to each other like what kept you guys wanting to do more.
I mean so I really enjoyed advocacy day. But I was kind of more curious after leaving there to learn more about who this girl was in Jackson Michigan which if you don't really know Jackson Michigan it's like a place you drive through to either go to Detroit or go to Lansing you don't really stop in Jackson. It's not really a go to location. So what you're going to be whole there is this person doing is a huge art exhibit featuring like over 50 pieces of art and stories that she collected while like mourning the loss of her failed cycles and field treatment. So
what basically happened is that at that same time I decided finally by the date the last last day I was going to go to that exhibit. So it's about like a two hour drive for me so I scheduled it in and then I decided OK well then I should maybe try and also meet with her. So I was made at like at about four o'clock. The exhibit closed at 5:00 was totally blown away totally. And then I think around 5:30 or so I went to meet Liz for coffee to see and actually have her participate in an interview that I was doing as part of an oral history methodology class tied
to my Ph.D. program and she'll take it from there. So we meet for coffee and Marie was pretty much like Well where do you do now the exhibits over and I was like yeah I know that it's over and I really feel like it was effective in not only like my main goal at first was educating my community and bringing awareness my community but it was really amazing about the experience with the way that people who have.
Infertility are dealing with infertility use the exhibit whether they participated as an artist or as a person who was interviewed or not use the exhibit as a way to talk to their families about the experiences of infertility. So I was really amazed by that. I don't know why that should have made sense to me I guess but it was not at all clear.
So I said to her I don't know like it seems like this is a really great thing and I'd like to continue doing it but I don't really know how. But it was just lucky that Marie at the exact same time was wanting to continue or start actually developing a methodology for collecting oral history. And what would this look like. And so we were like OK well maybe this is something we can do together. So Maria was basically at that point like I'm going to make this the topic of my dissertation and we can work together on this. And it seemed like a good fit. So we just started to do it. So now how did you take. That.
Conversation and turned it into an organization that has essentially grown in scope and taking it out of Michigan. I'm going to travel.
Yes so I think actually during that oh god that interview I'm not going to look at you. I asked the question. Something about diversity. And do you remember what I asked.
She didn't even have to say it. She looked at me and she said well what about.
And I said diversity because the first exhibit was very much what we hear and see in the media. A lot of times not so much now but definitely you know five or six years ago was you know the heterosexual white couple or the women who waited too long in quotes to start or start her family which is also a term I hate because I think a family of two is a family.
But we just were talking about that and they said issues like you should just go to California and I said yeah why don't I just go to California. So I decided to go to California. And it happens to be that resolve has. They have these walks of hope that are fundraising walks to raise money for infertility. So I made arrangements to go out to California and spent about 10 days between Northern and have other northern and southern California collecting stories and a little pop up exhibit at the walk. And it was a really great experience.
Yeah and when she came back I said so how was it at this time we were meeting like in a dorm cafeteria. After I was done teaching and she was on from work and she said it was great. Like I met so many people they had such great stories. I want to go back and I said that's great. But we have no money right now. So what happened is that we've actually found a medical humanities conference that was in Iowa and we decided to go and kind of bring the exhibit there and share some stories. And that was a great kind of moment where we could figure out a way that I could wrap that into my dissertation research and that could
also be another way that that project could continue exhibiting and sharing stories.
So now this has grown tremendously and you guys have been doing it for the last couple of years and how I met the two of you was even I had heard about it because you brought this exhibit to Seattle and I was at a conference in Vancouver and had heard about this and I was like What am I doing I need to go check this out.
And I drove down left the conference a day early which I would do anyway acupuncture conferences are not my thing. And I drove down just to see and check it out. And you guys are really.
Essentially given birth to something. And I feel like that's kind of a weird thing to say but at the same time like you guys have been trying to conceive for so long and you kind of did. One of the interesting questions that always comes to my mind just like how do your husbands feel about that.
Yes. So we definitely feel like this is something that we can see. You know we can't create a baby but we created our baby nonprofit. We're co-parenting our baby nonprofit. So that's definitely been something that's been amazing for us because we have this really close friendship out of this and we work so closely together and it's been amazing for us.
Yeah I mean Lisbon's and I are sometimes just like can you imagine like not knowing each other and immediately we're like no there's no way we're totally brought together and going through our experiences together has been invaluable. But that does. Create not problems but just tension sometimes with husbands because basically we're here because of them too. I mean our infertility. Our infertility experiences aren't just because of us. They're kind of experiences in some ways. And so it's always kind of fun to say hey
we're going to go to Philadelphia now just loads and I can do this podcast.
See I literally I just moved yesterday and I said See maybe you can come back my office and I just got a text that he did that so he's been a great supportive husband Liz's birth is a very great supportive husband as well. But you know we just try to make sure we can bring him once in a while.
We always invite them we always invite them straight but they are very supportive and we can do it without them. There's no way we could do this and it's been so important to our healing. I feel like this without this. I honestly don't know if I would still be married or still be at all coping because it's been that important to me. One of the things we talked about earlier was the word treatment and I feel like there are things about the words that we use around infertility like it not only just struggle but like finding success or battling or like the same thing with cancer these days where suddenly how strong you fight or how strong you battle cancer is going to
have a direct correlation to whether or not you survive and it just doesn't seem to add up in my mind and it just seems wrong.
Given where the two of you are now. Like how does that make you guys feel.
Yeah I think I used to use those words a lot too. But dealing with infertility has really made me think about the words that we use and how we choose to use them. And that's something we're always very careful of and mindful of in the act in the organization. Is that the word we use to matter even something as simple as embryo adoption versus embryo donation. And there are people that use it both ways for different reasons but for us it's very important that we use donation versus adoption for a variety of reasons legislative but also just the idea of redefining success. Just.
To say we know you just because you choose another path. Doesn't mean you give I think a lot of times we hear those words you know oh don't stop biting don't give up. And it's really OK to do that. You know sometimes we have. Physical or financial or emotional limitations that don't allow us to reach the initial goal that we had. And that's completely devastating in so many ways. But it's not the only way to find success after infertility is you know having a baby isn't the only way. So we're really interested in looking at the ways that we can redefine
success in successful outcomes of infertility and also share those with with others.
I think it's a really unique experience. You both have with the support group that you have but you both have been a part of the arts organization and just all the stories and the people that you meet. And I'm curious if there's ever been an issue or a moment of something that you've that has changed your mind. Like after talking to someone after seeing one of their art pieces has any of those moments influenced a change in a decision or a change.
Yeah not so much a total change in decision but one of the most things is that we've collected has been the story of a transgender who essentially was preparing to transition from female to male and went to the doctor's appointment that was supposed to be his first appointment to start testosterone injections. So he was supposed to start that day transitioning and was super excited about it and had done so much work to get to that point. And he sat down in the chair and the nurse kind of like nonchalantly handed him a
brochure and said Oh you might want to think about fertility and I like having some eggs frozen before you do this like I'm supposed to get the first injection. Like now I can't. So it to us that was just incredible that no one brought that up to him until that moment. And he ended up choosing to delay starting testosterone in order to have the opportunity to free the male so that if one day he decided he would like to present potentially be a genetic parent he could have that opportunity. And so we got to know Cole and his family
a couple of years ago and what was really also incredible. His story is that his parents dealt with infertility and it took them a really long time to find him. They actually adopted him as a private domestic adoption and just spending time with them and hearing both of their stories that really hit home to us. The reason why we do this. You know it affects so many people in so many different ways and it's so important that these stories are told that we don't hear as often because. If we don't tell them who is. And I know you know you were telling them and there are other people telling them but it's so important that those become the norm and not just you know the
unusual story that we hear. So. Kind of coming back around to a close you guys have.
A couple of options ahead of you in terms of your path to parenthood or your path to not Parenthood which is now your choice. What are what are your obstacles like what are the things that are kind of in your way and with helping you make decisions about what to do next. Yeah I think.
The path not to parenthood is a little bit difficult in terms of that that life choices and always supported or always easily acceptable.
And I think there's some decisions that we're trying to figure out with that but also the path not to parenthood is also exciting I think for Elizabeth tonight as well because it's a chance to really continue this project which we really do feel like we're co-parenting and developing and constantly growing. So it's a different choice for parents. I would say and then also on the other hand though choosing Parenthood also comes at a cost with this project as well and figuring out how it is that we can continue traveling with if we do have a child with us or what that means. On top of the additional stresses we have between the project
and then the child and then our husbands as well. How do we balance all that. I think to just continue a life choices.
I would say that the same I think that there's a lot of stigma still around people who move on especially who work to don't have children especially those who tried. And you know supposedly really wanted it and they give up again. Choose another path. People it's much better. But I think that that's that's. Although I'm comfortable with that for my family. But I feel like I kind of have age against me at this point too I mean to be 40 in February. And I you know 10 years ago would have thought it would be completely ridiculous to try to have a baby at 40. I'll be honest like and maybe in 10 years I would think that at 50 it's ok where
now I'm like no I don't want that for myself. And I think it's great when people do that. If that's right for them but it's certainly not right for me. So I'm feeling the pressure of time now and making a decision about what to do. And what does that look like. You know for for myself for my my family of two home for my art of infertility family not only Marie and Kevin but all of the extended family that we've made over time it's been really incredible and I can't imagine my life any different way. And a friend of mine said recently like talking about her baby like oh it's fine it's all going to be worth it when it's over. And I felt like it's not pretty.
It really is already worth it. Like I I wouldn't change it. And I already feel like either way whether I move forward and give treatment warm or try or we move along to adoption. I feel like I'll be ok either way. There are pros and cons to both and I think we'll find find our way.
So I normally like to end every interview with asking whoever we are speaking to. If you could link in three to five words just kind of recap.
The journey that you've had. How would you explain we've been through.
So I only have one word and it would be real re-orientation. I had to really reorient myself to happiness and what happiness is for myself. Well the test that I was really unhappy for a while like when I was first going through infertility and actually just accepting that maybe I'm just going to be infertile and that's that.
And that's going to be my body and I'll never experience pregnancy. And that's that's just the path that's laid for it. I was really angry. I was upset and I was not a happy person and my marriage wasn't happy because of that. And eventually I think after meeting people maybe people at advocacy day meeting people through my infertility support group meeting Liz meaning the people to the project. I was able to kind of reorient myself to a new definition of happiness and really be ok with the idea that maybe I won't have children maybe I will. But right now I'm happy. And that's what really matters.
And I miraculously came up with exactly three words and they are access to care. I think that that is the most important thing. It is so much harder. Infertility forces you to make a million decisions every step of the way. There's always something to decide. And. If you don't have the access to care that you need to treat your infertility those decisions are made so much harder. It's not just financial it's emotional it's physical. There's still the ways that people run out of resources before they get to a point where they are able to have the family that they want or even just if they
move forward without effort without growing their family just being so exhausted and completely drained by the time it's over. But if we have access to care. To make the decisions that are right for us that are informed by our doctors that are recommended. If we can actually have that access to care by having insurance coverage or whatever it is that makes that possible. I think that the journey will be so much easier for everyone. I mean someone with with coverage can go to a clinic and have a baby a year old. A year later where it doesn't always happen of course but that's a
possibility. And without that access to care you're looking at years of years upon years essentially. I met a woman the other day who just broke down who said you know we've been trying for so long and we can't even afford to get tested to find out what's going on going on. So I really feel like that's those are the three words that I would. Say.
Thank you guys so much. Wonderful.
So I want to thank Elizabeth and Maria for coming all this way just to be here. I have so many people to thank for getting this podcast started. I want to thank them. I want to thank Laura for. joining and being on this journey with me. And I want to thank my parents and my family and my friends who are up at the front here who literally I just would not be here without them and they have been so tremendously supportive and have listened and you know one of the reasons that I was sitting in a coffee shop I was telling a Joe’s in Rittenhouse Square the other day and David walks up to me and he's got his headphones in and he's like Steven you're in my ear as of right
now. And like aside from the fact that David is Canadian and is probably more advanced than most guys like he's that he's a person I never thought I would reach with talking about this and trying to share these stories. And that's so exactly why I'm here and what I'm trying to do. So I just want to say thank you thank you to my staff who are with me all the way and who help me and to all of my patients and to all of the people who have been willing to let us interview them and are willing to share their stories because it is their stories and it's that's what I'm really trying to get out as much as I can. All right thank you guys.
Thanks again to Elizabeth and Maria for sharing their story. If you'd like to find out more information on their exhibitions you can find them online at artofinfertility.org. And if you want to see one of their exhibitions we'll be coming to Philadelphia for the month of November. It's the old city Jewish art center. Check out our Web site at waitingforbabies.com or waiting for babies on Facebook. For more info. To Lauren and Caitlin from Team624communications for providing us with an amazing space we have so much fun doing this live and seeing everyone's reactions to this story. If you have a story you want to tell would be interested in being interviewed on stage in your town.
Reach out to us via the contact form on our site and we'll bring the show to you. We'll be back in a few weeks with another interview into the human side of the world and infertility. Till then I'm Steven Mavros. See you next time.
This audio features the songs "Bayou Farewell" by US Army Blues and "California Lullaby (Instrumental Version)" by Josh Woodward, all available under a Creative Commons Attribution license.