EPISODE 33: MAKING FRIENDS WITH LUPUS
Guest: Jen Matos
Lauren Selfridge: Hi Jen, thank you for joining me today.
Jen Matos: I am so excited to be here with you Lauren.
L: Yeah, me too. And as, as usual I'm going to ask you to give us a summary of your health journey.
J: Alright, so I'll give you the cliff notes, I suppose. I have two disabilities. I have lupus and I have secondary pulmonary hypertension which is from the Lupus and I've had lupus for 20, almost 28 years now. That was diagnosed officially on February seventh of 91, but unofficially diagnosed by my sister who was 14 years old at the time.
L: Whoa.
J: We used to like to go to the library every weekend and research things and I had been sick. I had been losing weight. I had been really fatigued. I was losing patches of hair, I had arthritis, I was getting fevers every night and no one could tell me why and on this particular….And I had, I couldn't go to the local hospital anymore because it was such a mystery. So my mom would drive me to the University of medicine and Dentistry in Newark, New Jersey because they lived in Jersey City and they couldn't figure it out and um, so on this particular Saturday my sister said, you know, when we go to the library, I'm going to figure out what's wrong with you. And she came back with like all these copies and says, I think you have Lupus.
L: Wow.
J: And we looked together at all the, all the symptoms and I think you're right. And then Monday the doctor wanted to see me in the clinic and I'd go to the clinic every day and all day everyday at the clinic, just seeing all kinds of doctors can taking pictures and blood work. And then he sat me down and he said, you have lupus. And I looked at him and I said, so is it discoid Lupus or is it systemic lupus, am I beginning plaquenil prednisone?. And he looked at me like I’m bizarre.
*Laughter*
J: He said “How did you know?” I said, “Oh my sister and I went to the library over the weekend and figured it out.”
*Laughter*
L: Oh my gosh. So you're prepared for that diagnosis to some extent?
J: Yeah, and once I knew, because the not knowing is always the problem. So once I knew what it was and I saw there was a treatment for it, then I knew what I could do about it, you know, so I had more power versus you know, having all these doctors have power over me and it wasn't until this 20 years ago that I had a doctor who was, we share the power, you know.
L: Yeah.
J: But, so yeah, just the fatigue. But I remember the fatigue, I remember just feeling so tired and achy and just not knowing and it was sudden, it was all of a sudden. So…
L: Wow. And so, okay. So you've had a quite a while living with lupus…
J: Mmhmm.
L: And then you said you had a second diagnosis?
J: Oh yes. Uh, in 2002 I was at a guitar lesson and I was on call, I was doing res life and I was call, and the duty phone rings and I try to run up the stairs, but it was a guitar studio and I get to the top of the stairs in my head is so much pressure. I've never felt pain like that in my head. I just felt like my, if my head could pop off my shoulders, it would have and I had called a friend and said “I need to go to the hospital right now and I don't know what's happening.” And they did some tests at the local hospital again and said “No, you know what you have, we can't treat here and so we're going to ship you off to Boston.” So there I went via ambulance to Boston and the tests came. The results came with me and I met with a doctor who said, “You have secondary pulmonary hypertension, you'll never be able to live by yourself. You will be dependent on others. You can never be fully immersed in water because you’ll have a chest tube coming out of your heart.” So I asked, you know, “How, how long do I get to make a decision about surgery?” He said, “Right now because we're prepping the OR.”
L: Wow.
J: That was, you know, um... a moment.
L: Yeah, that says it all.
*Laughter*
J: You know, these moments they come to, you know…. like sometimes I feel like a jug of milk with the expiration date, so they have this, this idea of how long I can last and same thing with Lupus. It was, well here's, here's generally how long people last, right. And then with the secondary pulmonary hypertension, I was, it was supposed to be 7 years and that was 2002. So what's that...16 years ago? You know, and so I'm still here and I think that that's another thing is we could get in a place where we hear the, you know, life sentence in a sense and get stuck there…
L: Mmhmm.
J: Or say I don't, I don't believe that number.
L: Wow. Okay. So I have chills already. This is the earliest I've gotten chills in an interview!
*Laughter*
J: Record, broken.
L: You should get a ribbon for that.
*Laughter*
L: So, tell me a little bit about this concept that you just mentioned, which is we can listen to this life expiration date concept or we can….What's the, what's the other approach for you? How did you choose this other way?
J: I just, I've always felt that I have a job on the planet. I haven't figured it out yet, but I always felt like I'm here for a reason and I haven't figured it out yet and why should my disabilities stop me from doing whatever it is that I'm supposed to do here, right? And so when the first lupus doctor talked to me about my diagnosis was... I had a regular rheumatologist, he said people with Lupus can live long, healthy, happy lives like everybody else. And then I just took him at his word and said well that's a good guarantee.
*Laughter*
L: Yeah, yeah. That sounds good.
J: I'm running with it.
L: Yeah.
*Laughter*
J: And so I did. And same thing with the secondary pulmonary hypertension and I think what's funny about these things is that it seems like every time I get sick it's right when I'm going to start school.
L: Huh.
J: Yeah, so I got the Lupus diagnosis right before I started college. I got the secondary pulmonary hypertension diagnosis right before I started grad school. And then I had my second secondary pulmonary hypertension major scare when I just, before I applied for my doctoral program. And so maybe I need to stop going to school for school.
L: I was gonna say: Jen, don’t get a second doctorate.
*Laughter*
J: No more school. Any ideas about law school are now dashed, but I think it's also interesting. But then it's also for me in a way, you know, it's a grace that that happens at the same time to remind me: No, no, it's not just about being sick, you know, this idea that you're sick. And what does that even mean when I’d say that to somebody, but that I still have potential. Does it matter if I'm in a hospital bed or if I'm standing up? I still have my potential. And so I think for me it's just this, and I've always been stubborn, but for me, if you wanna... if you wanna um, if you want to encourage me, tell me I can't do something.
*Laughter*
J: It’s kind of backfired on a lot of people.
L: Oh, that's a wonderful thing. And um, yeah, I think. Hold on, I have 10 thoughts.
*Laughter*
L: So as you talk about this, I feel really excited and specifically there's something that you said about “When I'm in a hospital bed or otherwise I still have my potential.”
J: Mmhmm.
L: And I just, it resonates for me so much because to be honest, you know, sometimes I think about, I'm saying to be honest, of course I'm being honest. This is the podcast that I host.
*Laughter*
L: I’m talking about my body and my experience with it, that there are times when I am thinking about...okay, like let's, let's do a worst case scenario or a difficult case scenario where I don't have my mobility or I don't have certain physical abilities that I kind of rely on right now and I come back to that same concept of “I can still create, I can still exist.”
J: Mmhmm.
L: And still, you know, have an impact in the world. It's just that it might be different than my original plan.
J: Yeah, it changes. Yeah. It might not be, you know, might not be what we had planned on it, But we adapt. I can't, you know, my daughter plays on the playground, wants me to do all these things with her on the playground. I can't, my body can't do it, you know, probably because of the surgeries or anything else and uh, but I can do other things with her and I just think of how can I adapt what I'm doing so that I can do it or I can do something or feel good in my body and, and participate, but, but it's not like a deal breaker either, you know. It’s just part of my story and I think all of it, like having disabilities...although there's other ways to learn empathy. I didn’t have to get them to learn how to be empathetic. I think that, uh, I took the long road.
*Laughter*
J: I think it helps me to be empathetic and to look at people in a different way and be more compassionate. I think I learned a lot of compassion. So my illnesses have taught me a lot and I think folks, there's a lot of pity and which I have no tolerance for, but there's a lot of pity and poor you and you know, and then this issue of luck, like I'm lucky that I'm not sick because this has nothing to do with luck, you know? But I think that I've learned, I've been able to learn a lot. And so in the beginning when I was first diagnosed with Lupus, there was a separation. I don't like this thing, I don't know what this thing is. And, and now I call her…
L: Awww!
J: She and I have integrated. We’re friends now. And it comes….I learned about Lupus. It comes from the Latin Wolf, canis lupus. And so I would have pictures of wolves around me, you know.
L: Awww.
J: And that's not a bad thing. And uh, so trying to think of positive, positive, positive perspective and not that, you know, folk’s disabilities have to be perky rays of sunshine all the time because I'm not.
*Laughter*
J: But if I, you know, if I look at the trajectory when times when I've been really sick and haven't been positive and how my body felt in that versus when I'm saying, “No, I can do this.”, you know.
L: I love what you just said about integration and calling lupus “her” and looking at the history of like just where the word came from and the wolf and you used the word integration, which is such a, I think a really key concept when it comes to going from, you know, a new diagnosis to now. So you've had quite a few years to integrate and….Well, first off, can you talk about what you mean when you say there's been an integration?
L: So I always thought the Lupus as something that was outside of me, you know, that this is a, it's a, it's an identity. So it's like my disability is part of my identity and so I accept. I learned to accept that identity, right? Just like my race as part of my identity and it's not separate from me, it's part of me and how I move in the world and how I'm seen in the world because of the way the lupus and the secondary pulmonary hypertension presents in my life. I'm not seen as someone with a disability so I can use that sort of, um, perceived temporarily able bodied status to, to move in that space too and, and help people see that folks with disabilities are all different. That the icon in the parking lot is not “It.”. We were all different.
L: Yeah.
J: And so learning how to just accept it, accept it as part of my strength, not as part of something that I needed to read to distance myself.
L: Yes. Yes. And you know, it's such a personal thing as all of our stories are. And I just want to be clear that I am in so much support of wherever people are on their journey of integration…
J: Mmhmm.
L: Or not wanting to integrate and wanting to keep it separate.
J: Right.
L: Which has its own way of making sense as well. And when you talked about this concept of this wolf in you, it was just, I felt this empowered sense of claiming and owning.
J: Mmhmm.
L: And I think of the wolf as this very majestic and powerful animal.
J: Mmhmm.
L: And there's a, there's almost this, what's the word? It's like a distinction.
J: Mmhmm.
L: It's a very beautiful lens to look through to say I have this powerful animal within me and I liked the idea of a visualization. Almost like imagining if my MS took a form….
J: Mmhmm.
L: What would it be? Would it be an animal? Would it be a color? Would it be a shape? Would it be moving? Would it be still? Would it change over time? I just, I love that concept because it gives me a little bit of ownership over my identity.
J: Absolutely. It does. For sure. And I remember my mom, like I in college, I kept a, I had found a poster on the college campuses when the vendors come and sell posters. And I think that this one of the, of the wolf…
L: Awww.
J: Like I'd see it every day and then my mom just could not stand it. “I don't know why you have to have it in your room.” and I had to explain, “Well, it's not a bad thing, you know, she's, that's what's inside of me now.”
L: Yeah.
J: And um, so that was pretty interesting for my mom to have that...for her not to be as, as excited as I was about my little wolf.
L: Right. But it's yours. So there we have it. Yeah, and I like that you kind of advocated for it.
J: Yeah. I was like, “What? This is okay.” And then 10 years after my diagnosis I went to the tattoo parlor and I got wolf prints on my back.
L: Oh my gosh.
J: I'm going to have these, like, they're really gonna, you know, make this a part of me in you know, a permanent way, like my lupus.
L: Yeah. Like my lupus.
*Laughter*
J: So I was like, this is what I'm going to do, would honor honor what's inside too.
L: That is so cool. I know that you like talking about spirituality and how it plays into the health journey.
J: Mmhmm.
L: And this feels to me like an intentional spiritual process.
J: Mmhmm.
L: And I wonder if you'd talk a little bit about your spiritual identity and journey.
J: Mmhmm...So I was raised Catholic and I like identify as like a buffet Catholic, so I'll just, I'll take some of the liberation and I'll take some of this impairment, and I’m going to leave the sexism behind. So it says I can pick and choose what I want from the Catholic buffet.
*Laughter*
J: And so, so being raised Catholic, I got a lot of questions initially or not even questions are more like warnings. “Don't be mad at God.” I thought...anger wasn't even an option, you know what I mean? So people, that was really interesting for people who were around me saying, you know, don't be angry, which I think goes more projection because I wasn't at all angry.
L: Yeah.
J: Anger was not one of the things I remember feeling, and I just felt...because there's that adage, you know, “God doesn't give you more than you can handle.” And I thought well, cool. Okay. So lupus seems like a big bag to haul, but okay.
*Laughter*
J: But I never, you know, um, yeah, I never had that. It wasn't an instinct for me to be angry about it. I just thought this is a challenge and I thought like, again, like, okay, and I liked being the underdog and having challenges and I said, okay, well this is it. I'm gonna, I'm gonna, you know, really nail this…
*Laughter*
J: Great...not great, but I can do it. More of this, like “I can do it.” And especially since that doctor said, you know, “You can live a happy life, a long life.” And then that's what I was determined to do. I was absolutely on a mission to have that life, the life that I want and the life that I, you know, dream for myself and still daydream about too. So, so spirituality wise, I just feel grounded, I feel grounded, I feel my mom gave me a great sense of, you know, whatever happens is what's supposed to happen and you're where you're supposed to be. And so I always felt like this was part of my story and was supposed to be part of my story.
L: Mmmm.
J: And I think that's where I come at it. Um, and then I don't go to church and I don't, um, practice religion.
L: Right.
J: Don't practice it. But I, you know, I, I write every day, I journal, I take time to myself. I'm, I spend time being quiet. I like being outside and going for walks. And so I think that too is part of how I ground myself, you know?
L: Mmm, that's so important. And I think having, there's just this theme of intentionality in your story where you're kind of owning your time and space and creating opportunities for yourself to nourish your spirit, to stop and reflect or move and do what feels connected to you and in your own way. So even your spiritual identity with Catholicism is “I am taking what I love about this, integrating it into my life along with everything else that I love.”
J: Mmhmm.
L: That's so cool.
J: It's, yeah, it's so strange. And then there's also, I've read about, you know, there's tradition is where folks with disabilities are our sacred. They're considered sacred and you know, and that was...it a new concept for me to think about that, that now being just like everybody else is all sacred, right?
L: Yeah.
J: But that my, my being sacred, it's not worth less than someone else's just because my body doesn't work in the same way.
L: Yes, yes. Thank goodness that's true. And I love...I want every episode of this podcast to be a reminder of that.
J: Mmhmm.
L: And you just said it so clearly and so beautifully that there is something really important about acknowledging that on a regular basis…”I am worthy. I am whole. I am sacred.” That there is nothing about having any kind of health challenge that makes me less.
J: Mmhmm.
L: Just letting that soak in for a moment.
J: Mmhmm.
*Laughter*
L: It's very easy, you know, because it's like, it's very easy to go down the path of “I'm deficient, there’s something wrong with me. There's something missing, I need to fix this.” and it just doesn't feel good to think that way. And yet those thoughts can show up.
J: Right. I mean, even the word: DIS-ability, right? “The lack of” right there. It’s, you know, there's so many things that make me cooler because of what I've been through.
*Laughter*
J: You have a good time in a hospital, you know, I have great bedside manner. I know like, where all the nutrition stations are in the hospital.
L: Oh my gosh, I love it.
J: I can really camp out there.
*Laughter*
L: I love that. There's an episode two weeks ago that was released called “Dating with health challenges” and we talked about...
J: I saw it, I saw it on, yeah. Oh, gosh.
L: About like when you, when you share your health challenge with your person that you're dating. I was encouraging people to claim their super powers that they have as a result of their health challenges because the ones that you just mentioned.
J: Yeah.
L: Because we do, we've got the inside scoop on a lot of things about life, about hospitals and about like the deeper parts of life.
J: Yeah, I agree.
L: You like to talk about relationships too and I'm curious if you could tell me a little bit about your, your thoughts on relationships and health challenges.
J: Yeah. It takes a special person.
*Laughter*
J: I think it takes a special person to not be threatened by my superpowers, you know, or my story because, you know, I, and I, I let my story out with people just like I do like if you let air out of a balloon, like a little bit at a time because I don't want to overwhelm. But I did one time I had somebody dumped me in the ICU on the phone.
L: Come on!
J: Like the day I got out of a surgery.
L: Oh no!
J: I couldn’t believe it, you know, I mean, I don't think we had texting. Well we probably could text at that point. No, I don't think I had a phone that can text. But, but then again that was this thing, that when, when she broke up with me that night, I said, “You know what I'm gonna do, I'm gonna get a doctorate and have a good life!”
*Laughter*
J: And I was putting on this list of like, “Oh, I'm going to show you!” you know, because she had said “Your illness”, quote unquote, “Your illness freaks me out and I want to know if we could be friends.” and I thought “You can’t be my friend. This is part of…. you're saying you don't accept this part of me.”
L: Yeah.
J: So that was something.
L: That was something.
J: That was something big, yeah., I was, I was married for 10 years and my partner at the time was, we had a good, we had a really good streak. I had like 10 years of no major health problems and at the end, towards the end I ended up getting cat scratch fever, which I didn't know was a real thing, but it is. And because I had been on chemo, had chemo treatments in the past, they'd put me on chemo thinking was a lupus flare and it turns out that when you're on chemo and don't need it, your body's very unhappy with you.
L: Yeah.
J: Um, but she knew. I mean she knew all about my health and, and I didn't have really any major health things happened during my marriage, which was great. My daughter who's six now also, she's seen me a couple times in the hospital but, but hospitals aren't foreign to her. So she would see my mom in the hospital to try to make it, you know, normalize, like normalize, all the, all the stages of life, wellness and illness, right? So you can visit someone in their home and can visit someone in the hospital. Here's how you can comfort somebody if you're saying you can be with somebody.
L: Awww.
J: Teaching and I had to be in relationship with people who have disabilities or aren't feeling well and, and talking to her honestly, but you know, what does that mean? And so sometimes I say to her, you know, “My body doesn't work the same way, you know, and that's okay, all bodies are different.” And so getting her to see that.
L: Oh, I love that.
J: And then just being with folks who, my favorite folks are the folks who aren't constantly reminding me that I have disabilities, you know, it's like he wouldn’t remind wonder woman that she parked her jet somewhere else all the time. “Your jet’s parked in lot B”, you know.
*Laughter*
J: So folks who treat me as myself and recognize my power and trust that I know when enough is enough and that I won't push myself and not to say that I haven't so the reminders are good. So I think it also depends on the audience. But yeah, there are times when I'm just trying to do... I'm so excited about being alive that I just want to do all of it.
L: Mmmm.
J: And then I have to remember that if I do all of it I'm going to be really tired and it's going to set me back. So I do appreciate those. And there, there are some folks in my life that they have the delivery perfectly, absolutely deliver that and I could hear them. And then again, there are folks like you. As soon as I hear “You can't.” then I'm like, “Oh, watch me. I'm gonna climb that mountain.”
*Laughter*
J: Repel down.
L: Yes. Well, you know, when you said something “I’m so excited about life, I just want to do everything.” I thought about how the excitement is always yours. It's just learning new ways to channel it, to let it out and I mean it really is like a super power, like you have to learn how to use it the right way, right?
J: Harness your power.
L: Yeah, harness your power. But I got, I got excited when I heard you say that because I can identify with that. Like, “Oh, I just want to do everything and I want to travel and I want to run around.” and then it's like, okay, just because of my body can't do those things doesn't mean I can't experience the excitement and let it out in some ways.
J: Mmhmm.
L: And what it is is it's passion, it's joy, it's alive and you don't have to have a quote unquote “able body” in order to possess those things and embody those things.
J: Right.
L: And I'm curious when you said “Some of my friends know how to say it to me in a like in the right way, in a loving way.”
J: Yeah.
L: What's an example of how somebody might say it to you that works for you?
J: Well, they, when they ask questions like when someone asks a question, are they in a state of curiosity about why I'm making a choice versus telling me? I’m not good with the telling, like “You can't do that” versus “I'm curious as to why. You know, when you're feeling tired, you're still pushing yourself to do this”, you know, and then that's great for me because then I can think about it and maybe it's a perspective I didn't have on myself.
L: Yeah.
J: I can ask myself that question and I can then do that work for myself and it’s not this “You can’t.”
L: Yes. Right. You're in the driver's seat.
J: Mmhmm.
L: And then we need community. Actually, I'm thinking of the concept of a wolf pack where everybody, every wolf in the pack has their own vantage point and is looking out for the pack as a whole. But no one will consider the entire picture. And we kind of need each other to look out for each other.
J: Yeah.
L: So that we can do well in community and that's one of the things I love about what you just said is, “Oh, okay, maybe I've got this one area of unawareness that, okay, you're reflecting it back to me, but you're not trying to take over my process and overpower me.” and kind of do a restrictive top down kind of approach to how to move forward.
J: Right. Right. Because then that, then I get into that a discouraging mindset where now you've lit me on fire and I will be a rocket.
L: Yeah.
*Laughter*
L: It’s fuel.
J: It’s fuel for me!
L: So I love the concept of coming out with a disability, like just the…
J: Mmmm.
L: I mean, I love the use of that phrase.
J: Mmhmm.
L:Because it feels very much it, it feels very in synch with reveal it, you know, this whole concept of revealing sexuality and revealing, um, ability which both can be assumed before we quote unquote “come out”.I think of coming out actually as an issue with a culture versus an individual because why do we have to come out at all?
J: Right.
L: Why isn't it assumed that everybody could possibly be everything.
J: Right.
L: But can you tell me a little bit about your experience with that concept of coming out with disabilities?
J: So it's, so when I was first diagnosed and headed to college, when I got to college, I wasn't out about it at all and I didn't want….because I had this idea that I was already dealing with internal lot in the internalization of race and do I belong in this school and class and you know, I'm first generation and, and you know, had so many strikes against me in my mind that I wasn't going to throw on disability and have people treat me as less than, right, you know, or a pity project or anything like that. So I didn’t tell anybody for about two years and there was a moment in my first year where I wasn't feeling well and I didn't know. I didn't know where to go. So I hopped on a bus to Boston by myself and, and looking back, you know, I had friends who certainly could have helped me with that and had been there for me or even driven me to Boston or help me brainstorm, uh, but I was really afraid of of what it would mean to get sick and not able to finish school. And I actually did get really sick while I was in college. I spent three months in two different psych wards because I was on prednisone, too much prednisone.
L: Oh no.
J: And I had steroid psychosis, which no one ever told me about.
L: That sounds really scary.
*bf b
J: So it really was an interesting chapter.
L: Yeah.
J: So then even coming out about that, you know, so when people say, well, what was that like? Because my, my actual coming out story as queer is tied to the disability.
L: Awww. How interesting.
J: I was in a psychotic state when I came out to my mom and I was just, I had this penchant for telling the truth at that moment.
L: Wow.
J: And I just had. So all kinds of stories archives true. It was like Wonder Woman had the lasso of truth on me like that whole week.
*Laughter*
J: And that's how I came out there. So I actually came out during the disability or my, my, uh, certain psychosis. Yeah. So that's been, you know, in having to tell people that and, and normalize, you know, behavior and your brain and, and when I work, when I go places to new jobs, I questioned should I tell people, you know, will people be okay with it?
L: Mmhmm.
J: And I'm very lucky to work at a place where they are and I'm supported and held and they treat me as a fully, you know, as a full human being and still can hold me when I'm not doing well. So I really appreciate that. But yeah, so sometimes I have to choose who I tell. There have been times when I've been teaching, um, in, uh, colleges and I've told students and then, um, if I have a sick day or something, then it comes up in my evaluation.
L: Oh.
J: That's, “Oh, well, I know that they're sick. So maybe this is why I think.” No, no, no, no, no, no, no, no, not at all what's happening. So, careful of, and I think it's better now. I think I've, I've learned how to couch it. I teach courses on social justice basically, and the way I approach the stories to see, you know, and I teach about education. So I say, you know, teachers get sick, students get sick and as emerging teachers, let's talk about that really real thing and how vulnerable do you want to be with our students when we talk about illness because it's about our body, right? That feels that's what's the most vulnerable to be as I'm talking about my body…
L: Right.
J: Because I want to come out to someone. I'm coming out to you about my body, you know, and like my, it's like a treasure...it’s a treasure map that I make with all the scars.
L: Yeah.
J: And this is from the catheter and this is from the other catheter.
*Laughter*
J: So it makes an interesting conversation, but it's, yeah, I have to be careful just like we all have to be careful and know who's safe and who can hold us during those times.
L: Mmhmm.
J: And who's not, who doesn't deserve to hear our story is the other thing. That not everybody deserves to hear my story.
L: Yeah. It's using discernment and you know, I think of course we, we, we do our best to gauge how much I want to tell to who and sometimes I learn from experience. Oh, I've made a bad decision in that...okay, I just told someone who totally bulldozed over my story and telling me how I should live my life.
J: Mmhmm. Right.
L: And I don't feel good about that. I'm going to move onto some other conversation.
J: Right.
*Laughter*
L: We'll be talking about the weather from now on.
J: Yeah, 56 degrees.
*More laughter*
L: And I liked the idea that you just shared of it being a privilege to hear someone's story and that this is yours to tell and to decide how you tell and who you tell. And, and also I am really interested in this concept of looking at policies that in our workplace that have to do with being sick, which is this very cut and dry thing at a lot of workplaces.
J: Mmhmm.
L: And I'm curious, how do you talk about it when you're, when you're doing trainings and...Yeah, just how to think about how people can get penalized and accommodations and how to work appropriately with folks. What are your thoughts on all that?
J: I've come, I come in and going back to coming out inside to this, come out to my students when I like on the first day and say, you know, I got all my social identities so that maybe there's a social identity that they, that we share. And then I'm modeling vulnerability and normalizing like I'm a, I'm a human, you know. I'm complex like your complex.
L: Mmhmm.
J: Uh, and as far as the workplace, I mean there was, I've had some doozies that there's one place that laid me off because I was sick.
L: Mmmm.
J: And that was, uh, that was one of the hard ones. And then I, you know, work at a place like where I work now, where I felt comfortable telling them that I have disabilities and normalizing it because I did it with the students too. And last year while I was working, um, well while I was employed at the college, I still am, I had a heart attack and they've rallied. I mean they without me asking for anything, they rallied and uh, and have a, we call it our work family and that's who I'm so lucky to be with. And so, you know, what do you need? Do you need to bring up food, you know, sky's the limit. This tell us what you know.
L: Awww.
J: And it's, I think it's just the nature of this place where I also worked here years ago when life when I was diagnosed with secondary pulmonary hypertension. And when the doctor said, you know, “You can't ever take a bath again.” and went down his little list. So I think, I'm lying in the hospital thinking “I've got my apartment. I’ve gotta the shower head because I can't, you know, this is not gonna work for me.” I didn't have to say anything, when I got back to the apartment after being released from the hospital, I walked in, find my, my, my bathroom was outfitted so that I could be accommodated, didn't even have to ask.
L: Wow.
J: And so I'm so grateful that I have that. I wish that that's what folks had because it makes me work better.
L: Mmmm.
J: Like I work hard, not hard. I work hard, but I, I want to do a good job here because I know that the community has me.
L: Yes, yes. That's beautiful. And it sounds like that period of time really sparked the people who know you, work with you and care about you to get to take action.
J: Mmhmm.
L: And one of one of the things about the unfortunate events that happened with our bodies were like a heart attack, for example. That's great. That's a big deal is that it also kind of stops business as usual and allows people to express their care in a very tangible way.
J: Mmhmm.
L: Show up in a, in a very real way. And in the story that you just told, what's cool is, well, it's great that they showed up for you and the part you didn't really say, but I can kind of get from it. Is that you took it in, you actually received it?
J: Mmhmm. Yeah, I did. It's what a gift, you know, and someone told me once, “Don't deprive folks of having the joy of helping you.” And as I think about that and, and how I felt whenever someone I cared about needed something, it's like I like it would make me so happy and honored to help you in any way that I can.
L: Mmmm.
J: It doesn't take away from me or my resources or what I need for myself, but this would really. It's regenerative, right?
L: Mmhmm.
J: So it brings me joy and so I had to think I would put myself in those shoes and uh, and yeah, it was, they really showed up and I was so grateful.
L: That's so cool. Are there any questions or challenges on your health journey that you're still sitting with and kind of still figuring out?
J: I think like the diagnosis wise, I'm all set, like in that, like technically, you know, I'm all set with that. I think what I'm trying to get back in touch with who I was. I was diagnosed when I was 16 and so who I was when I was 15, where I didn't feel like, “Oh, I have to stay in this one place because my doctors here” or “I can't travel to that place because what are their hospitals like?” you know.
L: Mmmm.
J: And just that, that every day is a new chance. Every day is something I, I like, I get a second chance every day that I wake up and that I could have the adventures I want to have. And so I'm trying to reimagine that and, and not feel tethered to a doctor or tethered to a place or tethered, you know, just because of my disability.
L: Mmhmm.
J: Last year went to Cuba and um, that's about as international as I ever got. I loved it, you know, I thought, well why couldn't someone with Lupus travel to Cuba?
L: Yes, yes, yes.
J: And so now I have my bucket list because I want to stay things I want to see.
L: Yes.
J: And if I'm not living my life, what am I doing? Right?
L: Yeah.
J: So I think that that's what I'm sitting with now is, you know, uh, I feel in a way I put seven things on hold because of this narrative of well, you're sick and you need the doctor, and I can say, well, yeah, okay. But I've done it that way for almost 28 years and now I can reimagine….that it's never too late for me to reimagine what my life could look like.
L: Mmhmm. Absolutely. I love that you brought this up because I'm wondering if we can like, I dunno, just talk about it for a little while because this is a question that I've been sitting with too and actually specific to travel. So you may know that this is because season two I started doing more in person interviews and it kind of started with a trip that I planned on the east coast. And for awhile I was avoiding travelling altogether just because I knew my body would struggle from time to time with fatigue and just feeling overworked and it was easy for me to just feel like I was losing my energy. And so I kind of created this almost mental tether that's reminding me of what you're talking about, which is like trying to figure out the difference between what my mind's telling me to do what my body is asking me to do.
J: Mmhmm.
L: And I started to realize that, okay, I have several years of experience dealing with when my body does what it chooses to do without me wanting it to do that.
J: Mmhmm.
L: And maybe I can just respond to my body the same way while I'm traveling that I do when I'm at home. Which I know it's not that simple necessarily because there are limitations. You're in a different place. Um, in your case you mentioned like different hospitals could be problematic.
J: Mmhmm.
L: And in my case it was, it was more like maybe I just need to bring permission with me on the trip to not have to live like the, you know, the instagram worthy trip where everyday is a photograph of a new location and outfit and it's like, today I am staying at an Airbnb and I am not leaving the Airbnb to explore the delicious city that I'm in because my body needs to rest and I'm going to make social media graphics for the podcast. And that makes my heart full. But there's a lot inside of me that would tell me like, oh, you're wasting your time because you're on this trip and you should be out. And it's like, well, that's just not gonna happen today.
J: Mmhmm.
L: So I, I did the trip by the way.
J: Oh, good.
*Laughter*
L: I did the trip and I found that, uh, yeah, there were days where I just didn't go out and, and that was okay. And I was so glad that I was there so that I could have little excursions. And it was, it was really wild to watch myself look at the psychology of why I hadn't been traveling for the past few years.
J: Right. And knowing your body enough to know what you need in the moment. So when I traveled the summer, it's like I'm feeling tired. I should eat something. Like I should put something about it because I know I know me and I know if I don't eat this right now or this type of thing right now, tomorrow I'm not going to feel great, you know.
L: Mmmmm.
J: Trusting my own instincts and trusting, trusting my body. And that's why I'm so grateful to have a doctor who had lupus, doctor who does that. Who I would say to him, this is what I'm feeling. Can we try? Can we run a test on this or can we try this? And he always says yes and he trusts me that I know my body.
L: That’s amazing.
J: And we worked together as I call it, the team. I said I'm the. I said, “We’re the co-captains.” And so when he introduces like a kidney doctor or cardiologist, I say, “Okay, well I'll try them out for the team, we’ll have to see how they do.”
*Laughter*
J: And then he’ll ask, “Welll, how did they go?” I'm like, “They're not on the team, they can't be on the team. They're not. Obviously, they didn't make the team.”
*Laughter*
L: That is so great. I love that so much. Uh, so yeah, I mean you're, you are. I mean a lot of it. Health, living with a health challenges is improvising and travel requires improvisation anyway. Travel with a health challenge especially requires improvisation.
J: Oh yeah.
L: And one of our superpowers is health challenges is that we tend to get better at improving.
J: Mmhmm, Oh yeah.
L: Like I actually think I'm better at traveling than I was before I got MS because I have a much better attitude. I'm like, oh, everything doesn't have to be perfect. I don't have to stress myself out with, you know, thoughts about why or how I should be doing it differently because I've been living my life for the past few years in a way that's like, oh, well, things are going the way that they're going.
J: Mmhmm.
L: And then also the, the beautiful relationship that you have with your doctor. I love that concept of the team. Did you have to go through other, um, other doctors to find your lupus doctor?
J:I had. So, when I moved to Massachusetts, I found him about maybe a four years after I moved here so I would keep going back to New Jersey to see my doctor in New Jersey and that just wasn't sustainable. And then I think he was recommended by a student at the college who also had lupus and said he was great. And it was funny because when I, I like to joke around a lot and my doctor's appointment, so my joy, you know, if you shut the exam room, doesn't mean my joys been like out in the waiting room, I take it with me. So, it travels. So I remember meeting with him the first time he was super serious. I thought, oh no, this is not gonna work out. Like I thought I'd loosen this guy up a bit. Now we get to the point where, you know, if I bring someone with me, they have to say, “Can we get to the exam now? Like, can you guys stop laughing and telling jokes?”
*Laughter*
J: Um, but, so yeah, so he and I, I've, I consider him a friend, you know.
L: Mmhmm.
J: Um, I consider him a friend and, and even he'll hug me and he'll say, I love you. And I'll say, I love you too because we're, this is our thing. Like, this is our thing, you know.
L: Yes.
J: And if folks want to join the team, they've gotta, they've got to be cool. So yeah.
L: Oh my gosh, I want you guys to be co-captains on some team that I'm a part of. Even if it's just volleyball, you know, like I'm game, I'm ready because that's the thing is like you, you are both creating this.
J: Mmhmm.
L: We don't have control over so much about our bodies, but we do have control over, like you said, don't leave your joy in the waiting room. You bring all of yourself with you and you apply all of the lessons that you've learned in life to your health journey so that you can make it this amazing, unique thing. I think people are going to hear this part of the story and be like, oh my gosh, this is a vision for me to hold for myself. Like I want to have that kind of relationship with my doctor.
J: Mmhmm.
L: And you created that.
J: Well, I mean, he's like, he literally has his life, my life in his hands, like literally right? What he prescribes, how he responds, all of it.
L: Yeah.
J: And I'm trusted this man with my life and so if he can't be part of the joyful part of my life, he just can't stick around.
L: Yeah.
J: You know? So doctors, people don’t see doctors when they're feeling great. Your doctor, your lawyer, don’t show up just cause.
L: Right.
*Laughter*
J: And he meets my joy.
L: Yeah. Oh, that's gorgeous. Alright. Thank you for that. Almost...it's not an, you didn't intentionally invite us all to do that, but I feel invited. So thanks for the invitation.
J: Welcome aboard.
*Laughter*
L: What does it mean to you to live a fulfilling life and has your definition of a fulfillment changed on your health journey?
J: I think my idea of a fulfilling life is to feel everything. So feel at all....like I want to. I can't. I can't, you know, understand the heights of happiness if I don't understand the depths of sorrow, right. I can’t appreciate it the same. And so I want to feel all of it, you know, I want to experience it. So everything that life has to offer on the table, I want to do it all. I want to, that's what it means to me to put it. But for me it's all inside of myself. So it doesn't mean like I know I'm not going to climb Mount Kilimanjaro. Does it mean that it means, yeah, I want to, like, I don't want to have my heart broken, but you know, but I'm glad that I've had those moments because then when I've been in love, those are even more special and, and sweeter and yeah, I want to understand what is to have a disappointment because then when I have a success, I really know what that means. And so I think the way my disability has helped with that is that it's, it's kind of didn't really give me a choice. Well, and it didn't, it didn't. I didn't ask for Lupus and pulmonary hypertension. I got it, but I also have to make a choice every day as to what do I want to do with it, you know, do I want to risk it? Risk things and risk vulnerability. And every time I followed my instincts on it, it's always worked out. And so I, I've never regretted following my instinct on that.
L: Mmmm.
J: Being in the hospital and all the times I've been in the hospital, it's taught me how to be with someone in the hospital. Right. And that's not always a great time or a pleasant thing to witness, but it's powerful too to have someone in that vulnerable position. And so I think all of that, that's what it means to need to be fulfilled. Just to be open to all of it.
L: Mmmm. And that your focus is on that inward journey and saying, I'm available for joy and heartbreak. Bring it on. And the external adventures are fun, but that's not how I'm going to choose to define my fulfillment in my life.
J: Right. Because there was, if there was a reason knew I couldn't travel, then it's like, it's not game over. Right. Did I still, I still have thoughts and feelings and experiences that I can still have in myself. You know, there's a, there's a whole trip right here.
L: Yes, exactly! You're pointing to your body as you say this right here.
J: Yeah.
*Laughter*
L: I love that. So do you have any funny stories from your health journey that you can share?
J: Oh boy. Uh, they typically. Oh, Fran. Okay. Francis...Francis. Um, that when I was in a Mass General in Boston, there was, they have, because they have new training folks, training nurses are training doctors and I usually get because I'm an educator, the doctor of record will come in the room and say, we've got this student, what do you mind if they come in? I'm like, okay, of course not, come on in, you know, I'm a teacher do. So I had this young nurse, and he was very handy. He has to draw blood here to insert an IV. And getting an IV is not my favorite thing even though I have, I have like five tattoos, but if you come at me with a needle like that, I'm fixing to run away.
*Laughter*
J: He's trying to get this IV. And my mom was a phlebotomist and so she and she would accompany me to the hospital. And so she's watching this young nurse and his hands are shaking.
L: Mmhmm.
J: He's this terrified and I'm now sweating. I can now feel myself sweating. This dude has a needle. Right? And my mom's watching and my mom is now coaching him. She's like, “Francis, here's what you do.” And she starts slapping my vein. I’m like “Slap harder, make that vein pop!”
*Laughter*
J: He's shaking and, and, and he hands her, like he moves toward her with all the, the needle and the alcohol swab. And he's like, “You do it” he’s like asking my mom like, “You do it, you do it.” She goes, “No, Francis, you have to do it.” I'm like, “No, mom, you do it. Everybody wants you to do this mom.”
L: Right? We all do.
J: We are all wanting it. And so my mom is now coaching this guy who had it get in, and it worked out, but it was this, you know, “No Francis, you have to do it.” Like no, don’t be his mom right now , be my mom right now!
*Laughter*
L: Right. Oh my gosh. I'm trying to imagine myself in that position. I would have said the exact same thing. Like this is not a subtle message.
J: He is shaking like even telling the story. Like I remember that day sweating. I could feel my back. I'm feeling warm. Just remembering Francis is really shaky hands and all his fear coming at me.
L: Francis, if you're listening, I hope it all worked out.
J: I forgive you Francis. Hope you're better.
*Laughter*
L: Oh my gosh. That is so sweet. I love that story and it does make a really good story. Like in the moment, these stories are usually not very fun.
J: No, no. Afterwards, it feels great.
L: Like this will make a great story. What do you have now that you might not have had without your two diagnoses?
J: I have a lot more now than I had in 1990. My mother and I got really close. She passed away two years ago, but we got really close over my being sick and she was the strongest person I ever knew and one day she said to me, and this is the greatest compliment I think I've ever gotten. She said, “You're strong like me.”
L: Oh Wow. That's incredible.
J: But the late night conversations we would have and the this being together and she taught me how to take care of someone when they're sick because that's what she could do for a living. So when I go, you know, I just. The comfort it is to have someone you love take care of you versus not that nurses and doctors that can't be loving, but there's something different about the home touch.
L: Oh yeah.
J: I think that's something that I didn't have before. I think perspective is something I didn't have before. Um, I think I wasn't really in touch with all my power before and you know, like I can do a lot of things. I could do a lot of things. I can make my dreams come true and just because I'm quote “sick” doesn't mean that I have to give anything out of it. Don't have to give anything up, you know, I can adapt what I want, but I don't have to give it up.
L: Mmmm.
J: I think that's the other thing. Community and really knowing who my friends are and how to choose friends and maintain friends. I think that's the other thing. Um, have people show up. I said I'd tell my students that allies and co-conspirators, they're not just the people who show up when you invite them to the party. They’re the people who help you clean up after the party.
L: Yeah.
J: And so I've had so many people show up to help me clean up after the party say, and not even say, what do you need? Just -- I noticed this, you know, I'm gonna help you with that.
L: Mmmm.
J: I've, I've gotten a lot out of this.
L: Yeah, I was just about to say. One small thing.
*Laughter*
J: It was just, yeah, it hasn't taken. It hasn't diminished, you know, even even the worst times or even when I've been really, really sick, there are still things that I remember learning from those, too. And so it's always a lesson and that's the gift of that I think is that I get, I get to learn about myself and what I'm capable of…
L: Mmmm.
J: And always thinking about what do I...not that, you know, I have to think about like what happens when I leave. But I think every human thinks, “What do I leave behind?” you know?
L: Yeah.
J: And I hope what I leave behind is, is this idea of, you know, it doesn't matter how big you are or how little you are, how healthy you are how, you know, if you're feeling not feeling well and you're still a fully potent person. Potent potable.
L: Ending with a jeopardy reference.
J: Right.
L: There's something I want to leave you with is a jeopardy category, potent potables.
J: Yeah.
*Laughter*
L: I just love how how I ask this one question, what do you have now that you wouldn’t have had, and you’re like “Here’s my list of 1000 things that I've gotten from these adversities.” And and also whenever people answer this question, I think it is in fact a reflection of your ability to create something very beautiful with limitation.
J: Mmhmm.
L: And that's something to celebrate and that's so awesome.
J: Mmhmm.
L: Finish this sentence. This is not what I ordered…
J: I was looking for more flavor.
*Laughter*
L: Oh my gosh. I love it. So provocative. Bring it on.
J: Yeah.
L: That's great. Well, thank you so much for joining me, Jen.
J: Thank you, Lauren. It was so great to talk to you and talk about this and I hope that folks find something in it that inspires them or makes them smile or makes them think further about all of it. Yeah.
L: I think that's definitely gonna happen.