Clare talks cochlear implants, EDS, epilepsy and thoracic surgery.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Before getting started, I want to say a huge thank you to David Laurin, who helped me with the transcript this week. I release a full transcript with each episode because I think accessibility is important and because I think it’s rad to have searchable versions of these stories. And even though I use Amazon Web Services to transcribe each episode, it takes a lot of time to edit each transcript. So you’ll be hearing from Dave a few episodes from now, but today I wanted to thank him for his transcript help!
Today I’m talking to Clare about a wide variety of health things. Clare has a cochlear implant after experiencing progressive hearing loss, and she’s been diagnosed with EDS and epilepsy. Clare also had major thoracic surgery as a teenager, so we really do talk about all sorts of body things.
As a quick content note, I want to mention that we do briefly discuss body image, weight and diet near the end of the interview, and I briefly talk about eating disorders during the wrap-up.
And before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: It sounds like you’ve read the transcripts, so you kind of know. And you’ve seen me on twitter. So you know what I’m up to. To get started I like to ask people, were you healthy as a kid?
Clare: Okay. First. This might be awkward because I don’t like to talk. You know, I’m very shy. So, yes, I was very healthy as a kid. Not so much as a baby, I was born by emergency c section, because there was massive. I weighed ten pounds. I was 24 inches long. So I was like a full sized human basically, trying to come out of my mother, backwards. So my Apgar scores were very low in the beginning. Apgar, do you know what that is? It’s a score of how a baby is doing, whether they’re crying, breathing, blue, moving, and they do it at two minutes and five minutes.
Clare: So that got better. And then I was just a massive child. Until I was about three or four, then I surged to being very tall and skinny and other than the occasional ear infection, you know, I was never sick.
Brianne: Things seemed pretty good. I mean, as a kid, you probably don’t think about it. But in retrospect, things seemed pretty good. Normal?
Clare: Yeah. I didn’t actually start getting sick until I was in high school, and then I would just get sick over and over and over.
Brianne: Okay and so when you say sick, what kind of stuff was happening?
Clare: I had a bunch of ear infections that are not related to my hearing loss at all. So I would just get an ear infection, and it would just stick around. So I was always at the pediatrician, you know? Age 14, 15, with an ear infection and that’s about it.
Brianne: And then, were you taking a lot of antibiotics?
Clare: Yes. Every time I had an ear infection, it was before the wait and see. But now since I have a cochlear implant, when I get an infection I’m on a month of antibiotics, so there’s no more wait and see. I guess I should say I’m deaf.
Clare: And I have a cochlear implant.
Brianne: Okay. And when did you get a cochlear implant?
Clare: Four years ago.
Clare: Right before I defended my graduate thesis, which is just the best time to have a major surgery and learn to hear.
Brianne: Yeah, it sounds like a good time to do something massively, massively changing like that. And so…
Clare: Yeah, it was.
Brianne: So, as a kid, you, or sorry, as a teenager, it sounds like high school, you had a lot of ear infections, but they didn’t seem related to anything else. And how was your hearing at that time? You said that wasn’t related to your hearing loss.
Clare: I wasn’t. I had progressive hearing loss, so I’m, I went to a very small school and there would be like, four other kids in the class. So I got along pretty well, and nobody ever thought anything was wrong with my hearing, even though it was incredibly easy to sneak up on me. And I would like, you know, be yelled at for, “Why didn’t you let the cat in? He’s been screaming.” I’m like, “Seriously, no I don’t hear the cat.” But I guess one thing that happened when I was a teenager is I had major surgery.
Brianne: Okay, and so tell me about that. Expected, Unexpected?
Clare: It was planned. I guess I don’t count this is being sick because it was all I ever knew. My sternum had grown in, so my heart was being sort of crushed.
Clare: It was shoved into my left chest. I mean it’s already supposed to be in your left chest but…
Brianne: But more so?
Clare: It was like all the way over there, and my right lung was not able to inflate all the way so I had constant palpitations. You know, my heart would just go funky. And my mom noticed one time when I was like, 12 or 13, and she’s a nurse, and she was like, “That’s not right.” So I went to the doctor, went to get CT scans and everything. I found out that there is 1.3 centimeters, I think between, the anterior part of my spine and the posterior part of my sternum.
Clare: So, like, not much.
Brianne: A very… Not enough for the things that are supposed to be there.
Clare: Yeah. I’m a medical nerd. So that also compressed my stomach. So I would always, like, be full. And I guess that’s part of the reason why I was such a skinny kid, like I was ridiculously skinny. So I guess one other thing, I know I’m all over the place.
Brianne: That’s okay, it’s hard to put this back in order.
Clare: Yeah. I was put on a diet of peanut butter chocolate milkshakes every night.
Brianne: Like a weight gain diet?
Clare: Yeah, it was just the worst thing ever, and it had, like, you know, extra carbs put in. They did the same thing at college. I was required to eat ice cream at every meal, and I was like, “I guess I’ll do it.”
Brianne: Yeah, and it was probably uncomfortable if part of what was happening was that there wasn’t enough room or your stomach was compressed, right?
Brianne: So you had surgery?
Clare: Yes, which was awful, because they went and broke every rib in my body and put a bar in and just shoved everything around. So I had an epidural at age 13 and that didn’t work, and it turns out that my hair color, reddish, has this weird, lucky gene, where Lidocaine doesn’t work.
Brianne: Okay, so the epidural didn’t work?
Clare: No. I could still feel, I could feel my feet. And they’re like, “Oh it’s just, it’s not too bad, you’ll feel some stuff.” I’m like, “No, I can feel you touching my toe.” I was in the hospital a week. That’s not the first time I had the problem with Lidocaine. A few years ago, I had shoulder surgery, and they did a nerve block with Lidocaine and when I woke up from surgery, my mom was there of course because she’s a nurse, and she’s my mom. I said, “I can feel my arm.” And she distracted me and touched part of my arm and asked, “Well what am I touching?” I was like, “Right through my fingers.” And the nurses didn’t believe me until I saw an article.
And so now I’m telling people, red hair and strawberry blonde, you might have this weird gene.
Brianne: Watch out for Lidocaine.
Clare: Yeah, it explains why I hate the dentist but I’ve never had a cavity.
Brianne: So that’s good. So it was an awful surgery. Did it help with what it was supposed to help with?
Clare: Yeah, it was awful in terms of major thoracic surgery.
Brianne: Which would be awful no matter what.
Clare: Yes. So, like sitting up for myself took a few weeks. It kills you. I spent the whole summer recovering. It was about six months before I could sneeze without cursing and my school’s a religious school so we had chapel everyday and I sneezed during the prayers once and might have said “oh fuck” sort of loudly. But I didn’t get in trouble though.
Brianne: That’s good!
Clare: I’m pretty sure I got away with that, but the surgery did help with the heart palpitations. Haven’t had those since then, ever. My lungs were done growing, so they work fine, just asthma.
Brianne: Gotcha. Yeah, they’re just doing their own thing.
Clare: Yes, but I still won’t eat a huge meal. I’d rather eat a little bit, you know, every half hour or something.
Brianne: You’re used to pacing your food.
Brianne: So that was in high school. Did anything else happen, health wise? That would be tough to not be numb when you’re supposed to be numb.
Clare: Yeah. I was diagnosed with Ehlers-Danlos syndrome.
Clare: Which everybody in the world thinks they have and it’s actually incredibly rare. There our eight types but I dislocated my shoulder during Habitat for Humanity, you know, helping people. I dislocated my shoulder and the doctors said, “Wow it’s really loose.” And then he tested all my joints and everything is really loose. So he decided that I had hypermobility type Ehlers-Danlos. And that was about all he ever said about it.
Brianne: And was that in high school?
Clare: Yeah, that was the after the surgery.
Clare: And that was grade ten.
Brianne: Yeah. So you were told that you had Ehlers-Danlos. The internet was very young at that time, it sounds like your doctor didn’t know much about it or think much about it. So then, did you think about it or do you feel like it impacted you?
Clare: I thought about it, because he said, “You’re going to want to watch out when you have kids.” And at the time I was thinking about eugenics like dude, don’t tell me not to have kids. But it turns out there’s a type of Ehler-Danlos that has spontaneous uterine rupture.
Clare: So he was giving me good advice just in a bad way.
Brianne: Yeah, that happens.
Clare: So I took it as a, “This, just don’t do it, don’t procreate.” That’s the only reason I thought about it. I’m still not sure if I have it or not.
Brianne: That’s interesting. I actually just talked to somebody who has Ehlers-Danlos with hypermobility and she was misdiagnosed with lupus first and her diagnosis was partly based on just the x rays. All of her connective tissue is probably gone. That’s exaggerating, but her bones are grinding together because it’s a connective tissue disorder. But I know different people manifest differently. So it sounds like it’s not something that’s recurred for you or caused other ongoing issues that you notice.
Clare: I mean it has, my joints hurt all the time. But to me that’s normal.
Brianne: You’re used to it.
Clare: Yeah, and I played sports, varsity soccer, track and lacrosse. So I’m used to something always hurting so I don’t ascribe it necessarily to Ehlers-Danlos. It could be, but then it could also be that time I went over a hurdle the wong way.
Brianne: And just injury.
Brianne: Yeah. Okay. And so then you went to college.
Clare: I did. With you!
Brianne: You were eating a lot of ice cream. Yeah, with me! And you are eating a lot of ice cream.
Clare: Yes. I went to college, I guess this whole time, since I began menstruating, I would get awful headache. But my mom always called them once a month headaches because they happen every 28 days. So those have probably been the worst part of anything, it’s just a migraine for five days. So during college, I’d go to class and come back to my room and sleep and go to work, and then sleep. And those suck.
Brianne: Yeah, yeah. I do not get migraines, but I do get debilitating cramping. Like I black out if I try to get up. And it’s really, it’s really something to navigate the world when you’re like, I have a really regular schedule for this one symptom that I cannot work around. Basically.
Clare: Yeah. But luckily right now I work in a lab where I can call to say, “Look, I have a migraine, I’ll come in later in the week.” And that’s been nice because they’ve gotten worse and worse and worse.
Brianne: Okay, so the migraines probably started at least high school, but they’ve been getting worse over time as something that you’re basically managing, right? And if it’s probably hormonal, then who knows what might be able to improve that? Have you tried anything? I don’t know what that would look like.
Clare: The normal first line treatment would be something that interacts with an SSRI, which my family we’re Irish, we’re depressed. So I’ve actually taken antidepressants for anxiety since high school, just because I was always an anxious kid and you know, and then in high school. One of my best friends killed herself. So lots of depression and anxiety.
Brianne: Yeah. Incredibly tough.
Clare: Yeah, it sucked. I think a lot of times people forget that mental health can have an impact on your physical health. So being anxious all the time, I wouldn’t want to eat. So anyway for migraines, the drugs interact and that’s bad.
Brianne: Yeah, you have to choose which one feels more important for you.
Clare: Yeah. Dying versus having a migraine. So I usually go with having a migraine. Because serotonin syndrome is very bad.
Brianne: Yeah, it’s important. Serotonin.
Clare: Well, having too much. You can look it up. I won’t give you a biology lecture, although I would love to.
Brianne: How about biology lecture light?
Clare: It’s just basically you get a high fever and malignant hyperthermia.
Brianne: So you’re too hot.
Clare: You’re too hot, yeah. Not like oh, she’s so hot! Literally too hot. And they can kill you easily, so that’s something I’m working on. Mostly, I just take advil. Advil and benadryl and try to sleep.
Brianne: Yeah, because being awake with pain is also awful.
Brianne: Yeah, so was anything else going on in college for you physically around that age?
Clare: I got pneumonia twice in college. Just kind of weird. The second time was senior year or fourth year. Whatever. I got it from the kids at the preschool where I worked. Because kids are germ factories. I love kids and everything, but…
Brianne: But they have a lot of germs.
Clare: They do. And in the town where we went to college town the doctors didn’t treat me right, like correctly. And I also refused to be admitted to the hospital. They wanted just one night. “We’ll give you some IV antibiotics” and I said no. I’m taking a bunch of hard classes.
Brianne: You can’t lose that night.
Clare: Yeah. So they give me an antibiotic that’s basically ineffective and I had a fever so high that well, I was an SA, so I had my own room.
Brianne: Which is like a student of staff person just for context. Like an RA in the rest of the world.
Clare: It’s like an RA but way cooler. So people on my floor were complaining about my coughing so much. So I had jugs of this cough syrup. And I was taking that and had such a high fever that I remember laying in bed and trying to figure out what kind of car I would want for a zombie apocalypse. Because some friends and I had been talking about, you know things you talk about in the dining hall, like a zombie apocalypse.
Brianne: That’s what you talk about in the dining hall for sure.
Clare: Yes. So I got sick in October, late October, and stayed sick until January. I came home for winter break and I was still sick and went to see my doctor and was actually given good antibiotics. And then I could climb a flight of stairs. Or go from my dorm to Bob’s Underground, the cafe on campus, without stopping.
Brianne: That’s a victory.
Clare: So that was pretty exciting.
Brianne: And abnormal, maybe, immune function. But something that could happen to anybody or maybe wouldn’t happen to anybody. It’s hard to say, right?
Clare: Yeah. A lot of kids got sick, but I think I was the only adult who worked at the preschool who got pneumonia. And it turned into full-blown pneumonia. And that’s how I met my ex-husband.
Brianne: There you go! As a pneumoniac. That’s definitely not the word for that. And then okay, so from there, is that the college chapter, or is there more in there would you say?
Clare: Well, I think since we’re getting close to graduate school, and post-graduate school, my whole life I’ve always had really intense deja vu. Or I don’t know, you’re Canadian, jamais vu. Like I’ve never been here. I took latin. Yeah. So, like, I remember being in kindergarten and just freaking out on the playground because I had been there before. And I was so sure. And then people think you’re just weird. But it turns out I was having petit mal seizures. So I didn’t find out about that until right after, literally right after the World Cup ended in 2014. Perfect timing. So I had just graduated from graduate school, had a masters in science, and watched every game in the World Cup because I’m a soccer fanatic. And then one night I had a series of seizures, like major seizures.
Brianne: Okay. And you didn’t know that was what was happening?
Clare: No. And I mean, I just felt weird. My ex-husband was in a different room. I somehow managed to walk to that room. And I told him, “Something’s wrong.” And apparently the way I said it, he was like, “Oh God, something’s wrong.” And so we went to sit on the couch. And then a few minutes later, there’s some hunky firefighters walking through the door.
Brianne: So he called EMS.
Clare: He did, yes.
Brianne: And you were not super aware of it ?
Clare: I was… no, they were grand mal seizures. So the whole fish flapping on the ground looking thing.
Brianne: And that’s… just for context a grand mal seizure is the thing that we see in media and stuff, right? And that’s what you’re describing. But when an average person thinks of a seizure, they’re probably thinking of a grand mal seizure. Is that true? You think so?
Brianne: Are their other kinds, or is it basically the two classifications?
Clare: There are. There’s grand mal, which is now supposed to be “generalized.”
Brianne: Partly because that means “big evil,” because it comes from when they thought people were possessed, right? Something like that?
Clare: I don’t know about that. I don’t worry about that.
Brianne: I’ll look it up.
Clare: I mean, if I’m possessed…
Brianne: Maybe you are?
Clare: Yeah, I might be, but generalized seizures are the whole brain misfiring, and focal seizures are one portion of your brain misfiring. So when I had the feelings of “I’ve been here before,” that was a focal seizure. And sometimes those can spread to the rest of your brain. And that’s what happened that fateful night.
Brianne: Gotcha. And so that was the first time that it had expanded in that way.
Clare: Yeah, first and hopefully last. Because I ended up being put in the ICU and I remember looking at the monitors and telling the nurse, I didn’t know is was my monitor, so I was like, “You should probably give that person some fluid. They’re tachycardic and hypotensive. So, you know, I’m not telling you how do your job, but…” And then the my ex told me it was me, and I was like, “Oh, why don’t they give me some fluid?” But they kept giving me ativan, which is a benzodiazepine. Like the date rape drug, I guess. But it’s the first line when you have a grand mal seizure, the first way to stop it. Usually you just give it to somebody in their veins and the seizure stops, hopefully.
Brianne: It stops whatever brain thing is happening. I’m not a scientist, obviously.
Clare: Yes. I am. So they kept giving me that every time I’d have another seizure. And the bad thing about benzodiazepines is they repress your breathing. So the seizure would stop, but I would also stop breathing. And then a big giant nurse would rub my chest, a sternal rub where you rub right there. You can try it on yourself, it hurts. So they just… they didn’t switch to a different tactic or anything. They just yelled at me and asked if I was going to breathe in thick southern accents.
Brianne: Okay. It’s a tactic.
Clare: This was Georgia. So ICU and then a few days in the hospital, and then, “Hey, you have epilepsy.”
Brianne: Okay. And is that, this is just my own ignorance, so is that an automatic diagnosis if you have a generalized seizure? That you’re epileptic?
Clare: No. So lots of kids get febrile seizures. So it’s not about how high the fever is, febrile means fever, it’s just how fast the temperature changes. And a kid who’s like two or three, will have a seizure, like a generalized seizure, and usually they don’t develop epilepsy. Though what happened with me is I had seizures that wouldn’t stop. And they happened in a row. Like, I don’t know how many in a row, where I didn’t come back to baseline. You know, back to me making jokes and being weird. So that was considered status epilepticus, which is a fun name for seizures that won’t stop.
Brianne: An epileptic state.
Clare: Yep. Good job!
Brianne: I’m not a scientist.
Clare: Yeah, you can have status asthmaticus, like an asthmatic state that won’t stop. That’s scary, seeing patients with that. But so eventually, the seizure stopped.
Brianne: How long were you there for?
Clare: I think four days. Three or four days. My mother-in-law wanted to fly in and I was like, “What the hell? You’re not a nurse. You know nothing about medicine, why would you come?”
Brianne: Like what are you going to do?
Clare: Yeah. And my mom wanted to come, but it was like a seven-hour drive. And I was actually probably not able to make decisions. So I said, “No, I’m fine!”
Brianne: Right. You think you’re fine, kind of. Or you would adapt to these things.
Clare: Yeah, it was good times.
Brianne: So you were there for three or four days, you were diagnosed with epilepsy, and eventually they were able to… either they did it or your body did it, or somehow you leave the epileptic state.
Clare: Keppra. It’s a medication that is wonderful. they finally in the ICU gave me what’s called a bolus of keppra, which is just the loading dose into my IV. And then no more seizures. So I take keppra twice a day and nothing has happened.
Brianne: No seizures since. And how long ago was that?
Clare: That was four years ago. July 2014.
Brianne: Okay, so almost exactly. So this is something that basically is totally managed for now by this medication.
Clare: Yeah. And the only thing they found weird in my blood was my magnesium was low and my blood sugar was low, which was weird because I had just eaten. So having low magnesium or low sodium can cause a seizure in just a normal person.
Brianne: Yeah. Electrolytes are important.
Clare: They’re important. They’re good. In the right amounts. So now I try to make sure my electrolytes are where there should be.
Brianne: Do you supplement electrolytes? Like magnesium is hard to get in your diet.
Clare: I take magnesium actually for migraines. Sometimes, when I remember. Because my doctor said a certain amount was good, but I forgot what the amount is, I need to ask him. And so sometimes I do that. And if I’m out sweating a lot then I try to drink gatorade or, you know, a better electrolyte replacement.
Brianne: Right, one with less sugar.
Clare: Well, like pedialyte is great. I know it has the right balance.
Brianne: Yeah, gatorade doesn’t have magnesium I think, it’s just potassium and sodium. Anyway, I do think about electrolytes sometimes.
Clare: Well, you’ve got two of them. So that’s that’s pretty good.
Brianne: It’s on the way. Okay, so that’s something to think about in terms of preventing them. And then also around the same time. So if that’s when you were in grad school, we must be somewhere near when you decided to have surgery for the cochlear implant.
Clare: That was after. I had surgery for the cochlear implant in January 2014.
Brianne: Okay, so that was before the seizures.
Clare: Yeah. And one doctor asked, “Is the cochlear implant causing the seizures?” I was like, “No, shut up.” Because he thought that it went into the brain. And I’m like, “No, you’re dumb.” I’m usually nice to people. It’s just that was a really dumb thing for him to say. So it does not go in your brain. It goes into your cochlea, with is the inner part of the ear.
Brianne: That’s why it’s called that.
Clare: It’s brain adjacent, but not brain.
Brianne: And so okay, so that was January 2014. And had you been thinking about that for a long time? You’d had some interesting surgical experiences earlier, so what was it like deciding to… I guess it’s voluntary surgery compared to something that happens in an emergency.
Clare: You mean the cochlear implant?
Clare: It was something I put off for years. Partially because my audiologists, the hearing doctors, said that I wasn’t a candidate.
Brianne: Oh, how come?
Clare: And then I found out that they were just trying to sell hearing aids.
Clare: And once you get past a certain amount of hearing loss, there’s no way to make… It’s not just quiet. It’s not like my glasses, where I can put glasses on and everything’s clear.
Brianne: You could never amplify it enough.
Clare: And it’s not about amplification. It’s more that the sound is degraded. So there’s distortion. I think of it as a tv with snow on the screen. Do they still have snow on the screen? I don’t think that happens anymore.
Brianne: You know, I don’t know, but I know what you mean, but I’m not sure if that happens with digital cable. It sputters instead, it glitches. But so putting on glasses won’t fix the signal.
Clare: No. A hearing aid won’t fix your hearing.
Brianne: So as your hearing had been degrading. So at some point you said when you were much younger you were easy to sneak up on. But you didn’t necessarily think anything was going on. And at some point that had kind of crossed over and your doctor was recommending hearing aids, but they didn’t help.
Clare: I wore hearing aids from 17 to however old I was, 27, I guess, 26. And I had to keep getting stronger ones. And at the time during graduate school, I was actually deaf with hearing aids.
Brianne: How was that? Hard?
Clare: Yeah, but also you can just read the book.
Brianne: That’s true. It depends on the program, I’m sure.
Clare: Yeah. This was medical stuff, so I could just read the book, usually. But when I was taking a class in advanced biochemistry, and I’m terrible at chemistry, I was doing that at the local university and I just popped into the disability office and said, “Hey, I have profound hearing loss.” And they’re like, “Okay, we’ll give you two interpreters.” And I was like, “Seriously, that’s all I have to do?” So I had interpreters.
Brianne: So they had good accommodations?
Clare: Yeah, like, accommodation was made easily. And that was mind blowing. But their interpreters don’t know the word for alkyne, or sino-whatever.
Brianne: Like super medical stuff. I could see their being some specialization problems.
Clare: Yeah, these are words that most people don’t know.
Brianne: Right, I couldn’t spell them, so if I needed to know, and were they signing?
Clare: They were fingerspelling.
Brianne: Yeah, like I couldn’t spell that. So that would be and obstacle.
Clare: So I’m just giving these poor ladies, they’re all women, I’m just giving them carpal tunnel. We figured out some ways around some basic words, but for graduate school taking infectious diseases that would have been… they would have had to spell brucellosis and just hard words.
Brianne: Long and unfamiliar words. And then for you, since it had been a gradual process, when did you learn sign language? Or did you already know the sign alphabet?
Clare: I actually was lucky enough that my local school just down the street from me was the city’s deaf and hard of hearing integrated school. So I learned sign language in kindergarten.
Brianne: Oh, wow. So as it happens, because I can imagine asking for an interpreter if signing is difficult, wouldn’t be a very helpful accommodation. And that must happen to people all the time.
Clare: No. I’m sure. But from kindergarten to grade six I knew sign language. And that’s part of the reason why I wasn’t diagnosed when I had mild hearing loss or moderate hearing loss. Because there was always an interpreter in the room. And I could just watch them.
Brianne: Yeah, you were already being accommodated without anybody realizing it basically.
Clare: Yeah, and I was sneaky. I cheated on the hearing test. It was like, raise your arm on whatever side you hear the sound. And I noticed that it was the same for everybody. So I just memorized it. And when it was my turn I raised, counted 1,2,3, raised. So you know, being a smart kid can get you in trouble.
Brianne: Yeah, well you want to fit in more. That’s my experience with other related things. Being like everybody else feels important. And if you can figure out how to do that, then it’s like you’ve solved the problem. Which may not always be true.
Clare: Yeah. And despite being able to hear better, when I switched to the private school St. Mary’s, I didn’t didn’t catch any jokes or anything. It’s an all girls school and girls are mean, we’re awful.
Brianne: Yeah, well, teenage girls, there’s a lot happening.
Clare: So I ate alone every day from grade seven to 12.
Brianne: That would be really hard.
Clare: Or I’d eat with a teacher or something. But it’s also I think, I mean looking back now, I know that obviously my brain was stressed from trying to understand everything. So I was just tired.
Brianne: Yeah. Working overtime.
Clare: Yeah. So by the time I was diagnosed with hearing loss it was moderate to severe. There’s mild, moderate, severe and profound. And by the time I graduated from college it was profound, and it just kept getting worse. You think you can’t get worse than profound, but eventually I was exceeding the limits of the test equipment because they can only make sounds up to 120 decibels. Which is like a jet plane taking off and I didn’t hear it.
Brianne: So in grad school you were able to ask for interpreters?
Clare: No, that was a post-bac, just taking some classes that I needed because I didn’t do well at a small liberal arts college. So I took it at a large university, and it was much easier.
Brianne: And they accommodated. And then grad school. And then in grad school, you got the cochlear implant. Gotcha.
Clare: During the end of grad school. But the second year I was on the clinical track, so we had, like, ten people in the class, and the professors were the same every day, and they would repeat what other people said. And they didn’t write on boards, which is great, because people writing on board and lecturing is incredibly hard to lip read because they’re back is to you. So in college I luckily had one professor in physics where there’s p and d and e and g all in the same equation. So I was like, “Look, this isn’t working.” And we figured out that if he learned the finger spelling for the letter, then I would get the rest.
Brianne: But those are all the same mouth movement.
Clare: Yeah, and they sound the same. So he would hold up a p if it was whatever, a v for vector, so it kind of looked like flashing gang signs. I don’t know.
Brianne: But it worked.
Clare: Yeah. It worked really well. He’s still my favorite professor.
Brianne: That is good. So okay, so from there, you had the surgery, and this hopefully was a better surgery experience. For the implant.
Brianne: You’re thinking about it.
Clare: It was.
Brianne: No trauma there?
Clare: Well, they wouldn’t let my mom into the recovery room, and my mom had my glasses, and she kept trying to explain, “No, she’s deaf, she can’t hear you. And without her glasses, she got 2,200 vision so she can’t see you even if you’re in her face. So you might be asking her a question like, ‘Do you feel good enough to leave?’ And she won’t know what you’re saying.” So I was in the recovery room from, like, 2pm until midnight, and they decided to just admit me. But the doctor forgot to leave orders for pain control because he didn’t expect me to still be there. And nobody could get ahold of him. And that was when the pain started.
Brianne: When everything else wore off.
Clare: Yes. And my mom just decided to… my mom had driven in to stay with me because she’s awesome. And she kind of sprung me from the hospital after watching them give me a shot of the pain medicine. I’m surprised she didn’t say it to the nurse’s face that, “You did that wrong.” But they did it wrong. It didn’t actually go into the muscle. So it wasn’t helping. So we navigated downtown Atlanta at midnight and found a CVS and got the prescriptions filled. I had this big head bandage, and the pharmacist saw that and was like, “They’ll be right out. We’re not going to make you wait 30 minutes.”
Brianne: So you got the home care, the prescription stuff?
Brianne: And then I guess it’s probably all covered by a bandage. But do you notice a difference right away?
Clare: Well, the surgery is just to put the inside parts in.
Brianne: Oh! And then there’s a… I used to know more about them than I know now.
Clare: How do you forget that?
Brianne: No, I used to know more about how they worked. I think I took a class, like a disability class in college, someone who did disability studies. And it was broad spectrum, but that was now over ten years ago. So I know the point of cochlear implants, and I do not remember the details of how they work anymore.
Clare: Yeah, I wanted to take that class and it’s funny because actually being a person with a disability that’s talked about in the class, I was rejected. So…
Brianne: So who knows.
Clare: Whatever. So a month later I got the outside part. Mine is bright blue. And then I could hear-ish. It was like Donald Duck, Daffy Duck, I don’t know. Some sort of duck sounding.
Brianne: It’s like vibrational?
Clare: It was at the very beginning. But I couldn’t tell men from women. Just that somebody was talking, I don’t know what they’re saying, but talking is happening. And then over the course of a few weeks, I just had dvds on, I was writing my thesis. So I put on dvds and had them playing all the time. And then one day I laughed at a joke, and I wasn’t watching the captions. And I was like, “Oh my god, I heard a joke.” And it was Modern Family. I don’t know which character said it. It could have been anybody, male or female, but they said something funny.
Brianne: Yeah, and you got it.
Clare: Yeah. Real people took a long time, and then music took a lot longer. But, you know, I’m ready to get another one.
Brianne: Hey. Do you get two, or can you get two?
Clare: Yeah. Unless you’re in Canada.
Brianne: They won’t cover it, is that why?
Clare: Yeah. You can get one! But hearing out of one ear is… you know, if I wanted to go for a jog, which has happened from time to time, a car could come up from my left side and I would have no clue it’s there. And I’d prefer not be run over.
Brianne: Sure. Yeah, I could see that. And so that was three and a bit years ago, basically. And so it takes some time to adapt. But so now, your joints hurt. But it’s not something you think about very much. And then you’re, like, sensitive to electrolytes. I’m just thinking through the cognitive overhead. So you pay attention to electrolytes for migraines and as a seizure trigger. But otherwise, you’re on medication for seizures, which seems to be working. And then are we pretty much caught up to the present? Has anything else… what else has happened?
Clare: I guess this is sort of a weird chronic illness, or more just a bunch of… like a series of unfortunate events or something like that. But I’m pretty sure they’re all connected. Because I’ve always been the kid who could fall asleep at the sleepover. And now I come home from work, and I’m probably tired from trying to understand people with very thick accents in addition to my job, which is studying drunk worms, literally, studying alcohol intoxication in worms. But I come home and usually fall asleep on the couch around eight. Then I could sleep all day. So I’ve always been like that. And it was awful playing varsity sports because I’d have practice and then have to do homework, and my high school was very rigorous as nuns tend to be.
Brianne: They’re known for it.
Clare: So yeah, so I’d come home and have to read a whole Dostoevsky book, or half of one, and stay awake, and then be back at school at seven in the morning. So, wow, this has been a long time.
Brianne: That’s part of it. I think once you start to think about your health as a story or something, you realize how many pieces there are going really far back sometimes.
Clare: Yeah. And one thing that just hit me was when muscles, like I was a rock climber in college and I was good because I’m long, like you. But after a while of any aerobic exercise, like running, I was a sprinter. Anything over 200 meters, I would just be like, “No, that’s way too far to run.”
Brianne: Yeah, your body rejects it.
Clare: Yeah. Like I could feel my muscles just stop working. And one time, during a very emotional time when my husband left, I got mono from the bastard. And I couldn’t go up two or three stairs without my muscles just aching. And I was trying to wash my hair and my arms just felt so heavy. And that’s when I thought, “Oh my god, I’m going to die.”
Brianne: That’s why I cut all my hair off. Like I don’t have hair anymore. And it’s because last year I was so sick that physically washing my hair was so awful.
Clare: I got my hair cut two days ago.
Brianne: You have nice clean ends? But yeah, that’s a real… fatigue. I think I end up talking with people a lot right now about how we don’t have good words for what that feels like. Because it is tired, but you’re heavy, there’s something else. It hurts, even though it’s not how we think about pain normally.
Clare: Yeah, to me it always felt like zapped.
Brianne: Yeah, I’ll say I’m melting. Like “I’m melting right now.”
Clare: That’s a good word. Unless you’re in the South. And then sometime, you might be melting.
Brianne: Sure. Yeah, if it’s really heat related. It’s cold here right now. I’m wearing a lot of warm things.
Clare: It’s cold here too, for, you know, relatively.
Brianne: Yeah, for where you are. Do you have, so you said you kind of think everything’s connected in a way. Do you have any of your own pet theories about what’s going on? Even if they aren’t super scientific? You might not. Like how do you explain it to yourself, or do you? I don’t think everyone does.
Clare: I mean the sleeping a lot and the muscle fatigue… instead of thinking of one grand theory, I would say it’s probably two or three different things. Like medication side effect. And maybe some sort of hyperflexibility problem that causes joint pain. And then maybe some misuse of… not me misusing my body, misusing carbohydrates. So, you know, I reach a point where I just dead end. There are disorders that some doctors who I work with have pointed out and I’m like, “But it’s not that bad.” My problem is I’m always thinking that whatever I have isn’t that bad.
Brianne: Right. Which is objectively true that it could be worse. But not always helpful. Have you, with talking about carbohydrates and just kind of metabolism. Do you ever play around with your diet? Is that, especially I guess if you were told to eat a lot of peanut butter and chocolate and ice cream as a kid, that would be really different. That’s really different than what I need right now for example. So how does that stuff play out for you?
Clare: I seem to need, physically need, a lot of protein, but I can’t forget about carbohydrates. And so, like greek yogurt, I think it’s kept me alive.
Brianne: Fair. It’s higher protein.
Clare: And it has probiotics. And it’s easy to eat when you don’t want to eat, which has always been a problem with me. I don’t want to eat or I forget about eating.
Brianne: Right. Well, and it must have been uncomfortable when you were younger.
Clare: Yeah, and now, post divorce, obviously I’ve gained some weight so I’m not super skinny anymore. Which, you know, is life.
Brianne: Yeah. Bodies are something that we have to reconcile with all of the time, I feel like.
Clare: Yeah, as a kid I hated my body when I was skinny because I was like literally a stick figure. And now I hate my body because it’s sort of curvy. And it’s one of those like, “Clare, you just need to get over it.”
Brianne: Right. And it’s easy to think like, “Women should just be at peace with their bodies! It would be really great. All women, whatever you’re shaped like!” And then when it comes to your own body, you’re like, “Okay, but my body…” It’s hard.
Clare: Yeah, I see people who are similar in size to me and think, “Wow, she looks great!” And then I look down and I’m like, “And I look like shit.” It’s probably because I’m usually wearing scrubs. You know, working in hospitals and labs.
Brianne: Yeah, they’re known for being flattering.
Clare: So very flattering.
Brianne: Yeah. Bodies, they’re tough. Yeah. So there’s just some different things going on, and you pay attention. What else was I going to ask? I feel like because we’ve gone through piece by piece, you’ve talked about how it impacts your day to day and what it’s been like with doctors. Is there anything else that you’ve thought about either from looking at other episodes or hearing other people’s stories or as we’ve been talking? Has anything else come up for you around health stuff?
Clare: Reading other episodes, a big thing that just has angered me is the way doctors treat people. And as somebody who’s actively trying to be a doctor, I’m like, “Why would you say that to somebody? They have legitimate concerns. Why would you say it’s just depression?”
Brianne: Oh my god, it happens so much.
Clare: So, and like I have depression. It didn’t make my hair fall out or anything. It’s just, I felt kind of sad.
Brianne: Yeah, because it’s not… I think depression is real. And I’m really mad that many doctors use it as crutch diagnosis at the same time.
Clare: Yeah. So I’ve sort of taken these and thought about ways I can in the future, when I’m a doctor, not be a jackass.
Brianne: That’s… I think that’s great.
Clare: So I mean, recognizing how people are feeling, and you know, sometimes it’s okay to say “That sucks.” Like, “Wow, that really sucks. How can I help you?”
Brianne: Yeah, even right now. I think that’s great, because that’s part of it. I think most people so far, people that I’ve talked to, when their health is a mystery, they get to a point where they understand that. They understand that it’s complicated for a doctor to navigate. But there’s still a difference between someone ignoring you and someone just saying exactly that, “That sucks. Let’s see what we can do about it.”
Clare: Yeah. Unfortunately, I want to go into emergency medicine, so there won’t be so much of the figuring stuff out. But you know, you can break an arm and have somebody say, “That really sucks. It looks like it hurts.” And you feel just a little bit better.
Brianne: They’re like, “Yeah. Fix it.”
Clare: Yeah. So that’s one thing and autoimmune diseases run in my family like wildfire. So I’ve been around people who have been chronically ill for, like, 40 years. And just knowing that it sucks and it’s not cool, it’s not fun, is something I think I’ve been aware of. You know, my favorite aunt has crohn’s disease, and I call her, she’s all chipper and happy. And then, “Oh yeah, I had to have another blood transfusion.”
Brianne: Yeah, “By the way…”
Clare: One time I got fired from a job and I called this aunt and her son answered, my cousin, and he let me get the whole crying story out before he said, “So I guess you heard about mom’s car accident.” And I was like… “Wait, you should have said ‘Shut up, Clare.’” But he’s a college professor, so he’s listening. Very empathetic. And then, “Oh yeah, mom was just in a car accident.”
Brianne: Yeah. It really helps to know people and to be exposed to different kinds of health situations and ways of being in the world. Which I guess not everybody is. I mean, I don’t think I was when I was younger.
Clare: Yeah. My mom worked at a kid’s hospital when I was a kid. So I was always there. She was one of the head nurses. So I’ve sort of always been around people who are not well. And then I worked at camps for kids with autism and different diagnoses. So I mean, everybody’s different. It sounds weird, but that’s always been the normal for me, “Okay, so this person is flapping their hands because it makes him feel better. Okay. They’re not weird.”
Brianne: “Whatever works!”
Clare: Yeah. And hey, at college that tire swing, I loved it. Did you ever live on south campus?
Brianne: No I did not.
Clare: There was a tire swing in between Haines and Read. And I lived in Read three of the four years, so I was in love with that tire swing. Because there’s something about moving back and forward. That’s why it helps babies.
Brianne: Well, thank you so much for talking to me. And talking me through all of the different things. I think it’s super important to share this stuff. And you did talk! At the beginning you said you didn’t like talking, but you did it.
Clare: I know that’s weird. It’s the most I’ve talked in years.
Brianne: Well, I am honored.
Thank you for listening to episode 9 of No End In Sight! After our interview, Clare also mentioned that she experienced a lot of doctors accusing her of being anorexic. She was underweight when she was younger, as she described in the interview, and doctors and therapists would often ask directly or indirectly about her eating habits and self image. So she was asked questions like “Do you think you’re big?” and also asked to monitor her caloric intake.
In Clare’s case, she told me that doctor’s kept asking her about disordered eating or an eating disorder, without necessarily acknowledging or responding to the anxiety and the literal compression of her stomach and esophagus that were causing her to be underweight.
If these stories have been resonating with you, then I’d love to hear your story. At this point I’ve interviewed a lot of straight cis white women, and I’d particularly love to talk to people with other perspectives. You can get in touch by visiting NoEndInSight.co or by contacting me @bennessb on Instagram and Twitter.
Plus I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we dig into all the questions about working and running a business while prioritizing your health.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I just picked out the colors for my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.