Rebekah talks about seeking accommodations on a college campus while managing Ehlers-Danlos Syndrome, POTS, fibro & a service dog named Zoey.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
First off, I want to send a huge thank you to MissMeredi, who recently left this heart-bursting review on American iTunes:
“I consistently find things I can relate to in these interviews. In a way they help to validate the emotions and experiences I’ve had on my own very challenging chronic illness journey, and help me feel less alone and anomalous. Brianne is a wonderful, grounded interviewer and much to my own surprise I have really enjoyed the amount of detail people go into when describing their paths. I’m so grateful this pod exists ?”
These reviews completely warm my heart, and I’m so glad to hear that the stories are connecting with people because I felt really alone when I started this podcast and my main goal is to hopefully make people feel less isolated. So it’s great to hear this, thank you!
And second, I have a brief personal update. Basically, I still haven’t bounced back to my pre-holiday energy levels and I don’t know why. So, I’m back on the doctor circuit right now, and I want to give myself a little preemptive grace by saying that I may be releasing episodes every other week for a while. The transcript for this episode took me a lot longer than usual, and if I stay slow for a while then I’ll also be releasing episodes slowly. I know you guys get it, that’s life wth chronic illness.
Now that that’s out of the way we can get to the episode! This week I’m talking to Rebekah about her experience living on a college campus with EDS, POTS and a service dog named Zoey. Rebekah talks a lot about how hard it’s been to get professors to honor her accommodation needs and her story has definitely given me a lot to think about. I certainly think that professors have a tendency to justify this kind of behavior by telling themselves that they’re “preparing students for the real world,” and it’s just such bullshit. Anyway. Rebekah also knows a lot about service dogs and service dog training, and that was really cool to hear about.
I also want to add a quick content note that this story includes the loss of a parent and implied suicide. There’s absolutely nothing graphic, but we do talk about grief and loss in the middle of everything.
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.
[guitar riff]
Brianne: I just like to start with: Were you healthy as a kid?
Rebekah: So I was considered healthy, but then looking back we can see some of the things that were happening, So I have a diagnosis of EDS, which is Ehlers-Danlos Syndrome, and POTS, along with fibromyalgia and what they think is probably mast cell but they’re not going to diagnose. So looking back, I played sports all my life, and there were times I got injured, and it was really weird because I would go from a pain scale of like 10 back down to five and playable within a few minutes. And we realize now that it was a dislocation being relocated and feeling better.
Brianne: Right. That’s actually, I’m so interested… So many people that I talk to are like, “Oh, yeah, I was really into sports as a kid and weird stuff happened?” But it worked at the time, like that was functional. Um, and dislocations. Definitely. So, okay, so you didn’t know what they were then. Is there a time when things started to change? Like, I so hear you on the “in retrospect, everything looks different.” But when did it start to become like “something’s not right now.” You know what I mean?
Rebekah: Yeah. So I started having some knee problems in high school. But once again, I was like “I’ve played sports all my life. I played basketball, softball. That’s not unusual.” But freshman year of college, I was playing division three softball and we found out my knees were dislocating. At the time we had no clue why or anything. So we were just kind of taping them to finish the season. And by the end of the season, I was like, “I’ve gotta get surgery to fix this. I can’t play like this.” They were dislocating multiple times a day. And so we went to, I played softball on the other side of Ohio, but then I live in Cincinnati so we went to a doctor back here in Cincinnati over the summer, and we were discussing my options. They were like, “Yeah, we can break your knees to help them not dislocate.” And then I don’t know what caused the doctor to ask, but she was like, “Are you flexible?” And I was like, “Yeah, I think so.” And she’s like, “Can we run a few tests on you?” And I said yeah sure, I’m a pretty easy patient. And she was like, “Can you touch your thumb to your wrist?” And I was like, “Oh, yeah, sure.” And I did it. And she was like, “Okay, that’s one point.” And the competitive side of me was like, “Oh, we’re earning points now? Let’s go!”
Brianne: Yeah. How flexible am I?!
Rebekah: Yeah, and so she’s like, “Do your other thumb.” And I did that. And then she asked me to do my pinkies, and they ended up taking pictures of how far my pinkies moved because no one else’s have moved that far, I guess. So I got four points that way. Hyperextension of the elbows wa another two. Hyperextension of the knees. And then the last test is if you’re standing with your feet flat and your knees not bent, can you put your palms flat on the floor? And I could do that too. She goes “You just earned nine out of nine on the scale, we’re pretty sure you have EDS.” And I was like, “Oh, so the points were not a good thing?”
Brianne: Yeah, it wasn’t like how healthy are you?
Rebekah: Right. And so they decided not to go ahead with the surgery because there were other problems going on. And we scheduled with a geneticist, but they couldn’t get me in for, like seven months or something. So I was still playing softball that summer, just for my travel team at home. And it got to the point one day that I couldn’t band on the field without crying because I was in so much pain. So my mom took me to the ER. She was like, “We’ve gotta do something for her, I can’t watch this.” And the ER said they couldn’t do anything. But they recommended trying to get into a rheumatologist instead of a geneticist, because they can also diagnose it. And so I ended up getting into a rheumatologist and she diagnosed me. Then I went into PT and OT for about a year. To see how much it improved and stuff, they were hoping that would help with my knee pain, just strengthening and what not. And I kept telling them “No, my knees still really hurt. Something’s not okay.” And so they ran more tests. They said, “There’s nothing torn, your meniscus is fine.” And I kept telling them, “No, you’ve got to keep looking. Something’s not okay.”
Brianne: Yeah, something’s not fine.
Rebekah: They finally realized that my femur was rotated 40 degrees in and my tibia was rotated 40 degrees out, so I had 80 degrees of torque on my knee.
Brianne: That’s a lot of torque. I feel like ugh just thinking about it.
Rebekah: Yeah. So they gave me… I don’t want to say experimental surgery, but not something they do very frequently. And they couldn’t guarantee that it would help. But the surgery was them breaking my femur and my tibia and realigning them. And they said, “So you’ve got to really consider what…” And I was like, “Well, I feel like straightening my leg isn’t gonna hurt anything. And I can’t live with what I’m dealing with right now.” So I opted to do it. And they did my right leg first, and that was in December, so two years ago.
Brianne: Okay. 2016, is that right?
Rebekah: Yeah, I think so.
Brianne: I know about math!
Rebekah: And the surgery went well. I mean, I came through and I was having an allergic reaction to something, they don’t know what, I have it every time I have surgery. But it’s nothing bad, it’s just like a rash and itchiness.
Brianne: Like flushing.
Rebekah: Yeah. But when you’re barely conscious because of drugs and you itch, that’s the worst feeling on Earth.
Brianne: Is it like your only sensation?
Rebekah: Yes! And they’re like, “It’s okay, don’t itch. It’s alright, we’ll figure it out.” And I was like, “No! You need to figure this out now. I can’t even focus on anything.” And they’re trying to ask me about my pain. I’m like, “I’m not in any pain. I just itch, please!” And so the first thing they do after surgery is they have you transfer to a chair on your own, like, on one leg obviously. And sit there for about an hour, just your first round of PT, basically. And I was like, “Okay, no problem.” I did it and I was having lunch on the way, and I was like “It’ll be fine. I’ll just eat my lunch. Then I’ll finish my movie and go back to bed.” And I was there for about 15 minutes, and all of a sudden I was like, “Mom, I’ve got to get back in bed. I’ve got to get back in bed now.” And my mom’s an occupational therapist, so she asked, “Do you want me to get the PT?” And I was like, “No, you. I need to move now.” And so she tried to help move me, and I was like, “No, this isn’t working. I don’t know what’s wrong but it’s not working.” So she called the PT and she tried, and I was like, “No, it’s not working, you guys can’t move me. This hurts so bad.” So they ended up calling the lift team, which would’ve been fine except the lift ended right on my break. But when they lifted me, all of my weight went through my break to my leg. So there’s a bar that holds the lift. So I just physically pulled myself up on that bar until they got me over to the bed. So then I was in a wheelchair for the next semester on campus. I go to a really small campus that is very hilly and has brick roads all throughout.
Brianne: That would be so hard.
Rebekah: Yeah, not very fun in a wheelchair. And I’m also a biochem major, which, the scientists are the least accommodating.
Brianne: Yeah, like just being in a lab, I would think having to do lab stuff.
Rebekah: Yeah. So we actually didn’t have any handicap lab benches, so I was at eye level with our benches all through an entire semester. So I would have to hang my materials off the bench to do it and then put them back up there. I can tell you I got an arm workout in that semester.
Brianne: Yeah, I bet, I bet. And how… One, I have not used a wheelchair often and I went to a small school and it has railroad tracks through the middle, and I used one only very, very briefly, so I have no idea what it would be like. But I had surgery on my foot and used a wheelchair literally for a weekend before I was able to switch to crutches. And the accessible housing was on the opposite side of the railroad tracks from any of the class buildings. And I was just like, “Okay, cool. Thank you. I understand that when you built this you didn’t think about it. But like…” I heard recently that the ADA is about to turn 30, so it’s time. Anyway.
Rebekah: And I actually had an issue with that. We recently just got a new office on campus for diversity and inclusion. And I went to their meeting, and they never once mentioned those with disabilities. And I was like, “You realize that we’re the most underrepresented minority there is?” And they were like, “Yeah, we do. But we were afraid to touch that subject.” And I was like…
Brianne: That’s not better!
Rebekah: Like we’re not contagious. I don’t know why you’re afraid. And so I sat down with them and they were like, “Yeah, yeah, we hear what you’re saying. But the college is grandfathered so we don’t have to put elevators in.” And I was like, “I’m not trying to be rude, but you know when this was built black people weren’t allowed to come here, right? But that’s changed. Why can’t me being able to get into buildings change also?”
Brianne: Grandfathering in bad policies, or not even policy but practice I guess, isn’t really an excuse. And you don’t necessarily have to install an elevator, there are other ways to create accessibility. Like moving things or whatever.
Rebekah: Right. Yeah. I remember I had just gotten back on campus and I got an email from financial aid, and they were like, “We need you to come in.” And it’s in a building without an elevator, and it has 17 steps up to the front door. And I was like, “I’m in a wheelchair, can you meet me somewhere else?” And they were like, “No, you have to come here.” And I was like, “I don’t think you understand. I’m in a wheelchair. I have a broken leg. I cannot get up those stairs.” And they were like, “You really need to come in here.” So at the time my boyfriend was on the basketball team and he had class, so he just texted his entire basketball team “Who’s free right now?” And luckily, it was someone I really knew. I worked for the basketball team, so it wasn’t like I wouldn’t have known any of them, but he shows up and he’s like, “What am I gonna do?” Because he’s smaller than me. And I’m like, “I can get up the stairs by myself if you could just get my wheelchair up there.” Annyway, I get into this building finally, and they just had to have me sign a paper.
Brianne: You’re like, “That did not have to happen there.”
Rebekah: I was so mad.
Brianne: There is literally no reason that that had to happen there. That… I would… Oh my god. I would’ve lost my shit.
Rebekah: I think I was just so tired from, you know, climbing up steps with one leg to even process “Did you really just do that to me?”
Brianne: Yeah. And I think it’s one of the things in this chronic illness/disability overlap space that’s really hard. Is that advocacy is obviously so important, but when you’re dealing with low energy and pain all the time, you’re like, “Someone else needs to be an advocate right now, because I am just trying to fucking live my life.” And that’s okay, like it’s totally valid. But you can see this stuff and you’re like, “Can’t wait til one day when I have the energy to yell about it because it matters.”
Rebekah: And this year, I’ve really convinced myself… I was like, “You’ve seen problems and yes, they’re not gonna get fixed for you. But you don’t want anyone else to have to deal with it.” Because I love my school, I’m 100% still in love with my school. But there’s just so many policies and politics and little things that could just make it so much better. So I’ve met with Safety Services, I’ve met with the fire department, I’ve met with our president and I gave him a list of stuff that’s wrong. Well, I met with our president last year before we left, and he was like, “Yeah, yeah. I took all this down.” I was really excited to get back on campus to see what had been fixed. We got a new football field and a new soccer field, but none of my requests had been fixed. So I was a little bit upset about that, and I met with him again. Well I ended up… I meet with Disability Services all the time, but I met with her and she was like, “Well, they can’t say no to me.” So I gave her a list of stuff. Because a lot of buttons on campus didn’t work, handicap buttons. And one time I brought it up with Safety Services. They were like, “You just have to hit it really hard.”
Brianne: Which is like, also an accessibility issue.
Rebekah: Yeah, I was like, “I have a illness that if I hit something really hard, I will dislocate my wrist.” And they were like, “Huh.” And then just never fixed it. And I was like… okay. Or we now have a lift into the financial aid building, which is great, I’m happy we have that. But you can’t access it by yourself. If you need the lift you have to call somebody to come out and unlock the lift. And I’m like, “I can press the button. It’s just like an elevator, get me up there.” Accessible by definition is me doing it by myself. So, our campus police is really helpful because there was no way I was going to be able to wheel myself around campus. So they have my class schedule and I would call them and they would come pick me up and take me to class and stuff. Sometimes you just want to be able to take yourself to class.
Brianne: Yeah, yeah, totally. And so for you specifically, because it sounds like at this point the wheelchair was related to… you were using it as you healed from the surgery. But I know lots of people with EDS use mobility aids on and off all the time because it helps.
Rebekah: Yeah, and there’s days I definitely should use them and I’m just still not in the mental space where I can do that and not have people be like, “Well, why did you use that yesterday and not today?” And I’m really working to get to that point. But it takes a lot to go from a healthy 18 year old who’s playing sports to “I need a wheelchair some days because I can’t get out of bed.” So it’s a learning curve, definitely. Luckily Michael, my boyfriend, he’s my rock. He’ll help me put my shoes on some days, he’ll help me get to the bathroom some days. But people don’t get sometimes it’s not easy. He put his first rib back in place for me the other day. It was funny because he’s very much… he doesn’t like stuff like that. But when I pop and stuff it freaks him out. But I was like, “Well, I can’t do this by myself.” And he was like, “Alright. How do I do it?” And I told him and he started dancing when he did it, he was so proud of himself. There you go, welcome to the dark side!
Brianne: You got this. Just a light popping a joint back into place.
Rebekah: No problem.
Brianne: It’s easy. That’s awesome. And so you’re still in school right now, right?
Rebekah: Yeah, I actually just got the news I have to stay an extra year.
Brianne: Oh, that sounds like fun.
Rebekah: Yeah. Like I said, I’m a biochem major. And we have the option to do a bio or a chem capstone. And a lot of what I want to do was more on the chem side, so I decided to to a chem capstone. We start that three semesters before we graduate. And they ended up medically withdrawing me from the first semester because all of our classes are discussion based. So when I have accommodations that day, I’m not gonna make class, they just don’t accept that.
Brianne: Oh. Like there’s no way to work around it in their model.
Rebekah: Exactly. So when I’m not in class I get a zero for the day, so that really set me behind. And then his semester was my second semester of it. They let me go ahead and do the second semester, and I was just going to do the first semester along with the third semester so that I could graduate on time, and I had a B in the class at midterm. And right when we got back after a break, I had kidney stone. [Brianne groans.] Which really set me back, because they still are not 100% sure I passed the stone. After three weeks I was still having symptoms, and they actually thought I had an infected kidney so I was missing quite a bit of class because…
Brianne: Yeah, and that’s painful.
Rebekah: And so I was talking to Disability Services the whole time just keeping them updated, blah blah blah. And I was having a hard time talking to my professors, because I was constantly getting emails like, “Why didn’t you turn this in? We gave you an extra week to do it.” And I’m like, “Okay, but I didn’t heal in a week.”
Brianne: Yeah. “I can’t actually predict the timeline for this.”
Rebekah: Exactly. So I was staying up for three weeks on end I stayed up till 5 am doing homework, trying to catch up, which didn’t help me heal because I was sitting there not getting sleep.
Brianne: Yeah, sleep’s important.
Rebekah: Yeah, I was working so hard to get caught up. And right before Thanksgiving break, I met with my… we have a lot of capstone professors, but the person in charge of capstone. And I was like, “You just sent out a thing about picture day, is that required for capstone? Am I gonna lose points if I’m not there? I already planned on going home today.” And he was like, “No, no, it’s fine.” I was like, “Okay.” And I get back on campus. We have presentations twice a semester. And for my first presentation I was week one, there’s eight of us who present a day. So logically I was like, “Okay, I’m week two next presentation.” Which I admit, I probably shouldn’t have assumed that. But the other reason I assumed it is because I was never assigned an article to present on. And I just had this really bad feeling. I checked my syllabus and I presented week one. So I emailed my professor, and I was like, “Look, you never assigned me an article, so I don’t know how you expect me to present tomorrow.” And they were like, “Oh, we assumed you dropped the class.”
Brianne: Cool. Cool.
Rebekah: And I was like, “Well, I didn’t. Can you send me an article and I’ll stay up all night getting ready to present it?” And they were like, “No, you didn’t meet with us 48 hours ahead of time so you’re not allowed to present. And if you don’t present, you automatically fail.”
Brianne: Cool. Cool.
Rebekah: I was like, “So because you assumed I dropped the class, I’m not allowed to present?”
Brianne: And apparently… or get an alternate option.
Rebekah: Yeah. And they were like, “Yep, pretty much.” And they said things like, “We warned you your health would be a problem.” And I was like, “I’m pretty sure that screams lawsuit right there.” So I’ve been working with a disability specialist as long as I’ve been diagnosed and everything. And she’s like, “I have a really hard time forcing these accommodations because I can’t alter the class.” But I’ve offered solutions. They were like, “Well, if you can’t be in class can you skype in?” I was like, “Yeah, if it’s a mobility issue day. But if it’s me throwing up in the bathroom or being unconscious kind of day then no, not really. Sorry.” But I was like, “I could meet with you one on one and have the discussion, and that’s a lot more difficult than me discussing with my peers, discussing with someone who’s supposed to know the information enough to teach it.” And they were like, “No, no. We really want it to be with your peers.” And I said, “Okay, can you record the class? And then I will do a dialogue along with the class in text format.” And they were like, “No, we want it to be impromptu.” And I was like, “Listen, I’m trying to meet you in the middle here. And, you’re not given any leeway.” So I ended up just not worrying about the class, they said there was no way I was gonna pass. So I was like, “Okay, I might as well focus on my other classes.”
Brianne: Right, like the amount of headspace that that will take obsessing over isn’t worth it right now.
Rebekah: Exactly. And so I got my final grade, and I saw that I had an F in my capstone class and I said, “Why is that not a medical withdrawal?”
Brianne: Yeah, and that’s the one where they assumed that you dropped it anyway, like they’re treating you like you have withdrawn from the class.
Rebekah: Exactly. And so I emailed the disability specialist because it got to the point with these professors where I was scared to walk into our science building, which is ridiculous. I was missing other classes because of it because they said things like, “Well we see you on campus, we see you walking around. We don’t understand why you can’t get your homework done. We see you at work.” And so it got to the point where I was afraid to do those other things because they might see me and make those judgments.
Brianne: People talk about this in so many different contexts. But it’s like you have to perform being ill all the time or people don’t believe you, which is a huge awareness problem around most chronic illness. Because it doesn’t work that way. You’re not… I mean, some people are, but you aren’t necessarily sick in bed 24/7. Sometimes you have good days. Sometimes you are pushing through in anyway because you want to live your life. So much happens. But you can’t choose when you feel bad.
Rebekah: Exactly. And especially on campus. I’m like, “Yeah you see me around campus. I live here. I have to go get food still.”
Brianne: “I leave my room when I can.”
Rebekah: So it ended up that I had to appeal this grade through the academic standards committee, that was the only way I could ever change a final grade. And I did. I wrote a letter. The disability specialist actually went in and appealed my case for me, she said she gave several reasons why it should be a W and stated that it was because of my medical circumstances that I couldn’t control, that I was not able to perform in the class. And I just got the letter yesterday saying that they denied my appeal.
Brianne: That is so frustrating.
Rebekah: And so I sent the disability specialist an email again asking is there anything I can do? And she said, “No this is final. I don’t understand because I went in myself but apparently that’s not enough.” I was like, “Why do we have a disability specialist if you’re just going to ignore her?” So I’m actually thinking about meeting with the president again and just being like, “Listen, these are the things I have had happened, and I love your campus. And you’ve asked me before why you don’t have more people with disabilities on campus. This is why. Because it’s just not possible in any way.”
Brianne: Yeah, and the very specific circumstance of like, “We assumed that you withdrew, so we didn’t give you something you needed to succeed. And then when you asked us about it, we wouldn’t give it to you. So now you’re failing.” It’s a double bind there, and obviously I’m sure there’s so much more circling, especially in the larger conversation. But yeah, of course, this isn’t working! And I wonder, because I talk about this with people about work and career stuff. And I just wonder… you did just describe a lot of workarounds. But what are the ways that this could work for people? Like what would be your ideal class setup?
Rebekah: Honestly now, it would probably have to be online. Just where my health is, because people don’t understand that it’s very random. It’s not like I know on Tuesday at this time, I’m gonna be sick. So I actually had a professor, I went in and I show my accommodations every time I have class. And I tell them, “This is what it is, this is reality. I’m hoping I’m not gonna miss, but the reality is I’m probably going to.” And he was really on board with me all semester. He was doing great. And then I was studying for my final exam, I had a high C in the class. And I was like, “Oh, there’s actually a chance that I’ll end up with the B in this class, that’s pretty exciting.” And I was just looking over my grades, and I see this little note next to my final exams that hadn’t been entered yet. It said “You’ve missed 13 classes, that’s ten unexcused absences, automatic -40 points on the exam.”
Brianne: You’re like, “What? What constitutes excused versus unexcused when you come in at the beginning with that information?”
Rebekah: Right. And I was just freaking out because I was like, “Okay, so I’ve gone from maybe I could get a B in this class to if I miss more than ten points I have a D in this class.” And I was like, “That’s ridiculous.” And so I emailed my disability specialist and she was like, “Yeah, I’m gonna figure this out for you because this is one of the things we talk about every year.” That’s what’s been so frustrating for me and her is every semester we sit down, we show our accommodations. Every semester we have teachers sign it and agree to it. And then every semester, we have this issue of “Well, she missed more classes than I expected.” And I’m like, “Well sorry? It was more than I expected too.” And so he was like, “Well, I’m just kind of tired of accommodating to her.”
Brianne: That’s not a thing! It’s not up to you! If you agree to work, first of all, in a place that is actually obligated to provide accommodations then it doesn’t matter if it’s work for you. And sure it would be nice if it was really easy because we had designed them that way the first time. But the problem is that we didn’t. We didn’t design things to be accommodating.
Rebekah: Yeah. And my big thing is: How much work is it for you to not take away points from me? I’m confused. Is that an actual lot of work that I didn’t know about, you not taking points away from me? That takes a lot of your time? I’m sorry.”
Brianne: Yeah, like, what is it? It’s just vindictive, that would feel vindictive. You’re mad that I didn’t come to class, and that’s fine. But you knew, and that’s why we had this setup.
Rebekah: And a couple of years ago, we had the problem where teachers were like, “Well, I want a doctor’s note.” And my disability specialist was like, “She can’t go to the ER every time she has dislocations, that would be thousands and thousands of dollars. She’s trained to put her own joints back in place. But if she has to dislocated knee, she’s not coming to class. Sorry not sorry.” And they didn’t understand that for so long. I actually had, I passed out the night before while studying for a midterm I guess it was, literally on top of my friend. And I just never really recovered from it. I was drinking lots of fluids, lots of salt, everything I’m supposed to do. And I got up that next morning, and I could barely stand. I told my professor what was going on, that I was going to get an IV. But they couldn’t get me in until the evening. Whatever. But I had… they blew two veins and they stuck me six times. But I had pictures because our Health and Wellness does not give excused absences no matter what. So I took pictures of everything and I brought them in and I was like, “Is this enough?” And I showed her pictures of my busted veins and everything, “Is this enough?” She goes, “No. You can’t retake the exam.”
Brianne: It’s like who… Why are you… Who is this for? When like you’re saying, it’s not really extra work. I mean, maybe someone has to proctor or oversee the exam, but there’s not more to it. Or I mean, I know with retaking exams I guess they’re worried about people knowing the questions in advance because other people have taken it. But even then, like it’s just not… Yes, that sounds extremely frustrating.
Rebekah: Yeah, and so it’s just like I sit down with my disability specialist and I’ll come up there just sobbing. She’s like, “You’ve earned this. It’s so bad that you have to fight every single day to earn a degree that you’ve worked harder for than anybody else on campus.”
Brianne: Right. It’s not like you’re not trying to learn this content.
Rebekah: Yeah, and the fact that I’m keeping up. I actually was passing biochemistry with missing probably half the classes this year until the final. I’m not a good tester, the final exam went bad and I ended up failing it. But I wasn’t mad about that. Because this professor’s worked with me the entire time and actually, she’s one of my capstone professors also. And when the capstone thing all started going down, all the other professors were like, “It’s not us that are upset, it’s really Dr. Carson. She’s really upset, she doesn’t understand.” I was like, “That’s really weird. She hasn’t said a single thing to me, and I have another class with her, you would think she would say something.” And then at one point I was asking her about something, and she answered, and I just never emailed her back. And she came to class and she was like, “Are we Okay? I really didn’t mean to upset you. I just didn’t really see any other option.” And I was like, “No, no, we’re good. I just totally forgot to email you back and just say that was good.” And she was like, “I thought you were mad at me. I really don’t want that.” And I was like, “Yeah, she’s the one who’s mad, you’re right.”
Brianne: Yeah, she’s the only human in this situation, apparently.
Rebekah: And I’m like, how are you going to throw another teacher under the bus just because you don’t want to take the blame of not wanting to be accommodating. So it’s been so frustrating. And especially I recently decided to open my own business of training service dogs And I thought it would be really cool to get a program started on campus where students could foster these service dogs in training. It would help bring awareness on campus of what srvice dogs are, what chronic illnesses are. It would help me out because I wouldn’t have to have, like, eight dogs in my house when I graduate. So I started working on that this semester and it was going really well. I actually had the program proposal approved by Housing and then by someone else. And then I had to meet with someone above all of them. And he took like four weeks to get back to me. And the idea was I was gonna be starting it this semester at the beginning of the semester. And it was getting toward the end of the semester, and I was like, “I really want to start this semester, one of the things you said you guys were concerned about was getting into somebody else’s schedule once they’ve established a routine. So the longer you take, the longer I’m going to get into somebody else’s routine.” And so he was like, “Well, I’ll bring this to the cabinet.” After they had an hour discussion with me about it. And so then I emailed yesterday and was like, “Hey, has there been any progress on this?” And he said, “Oh, no, we haven’t sent it anywhere.”
Brianne: You’re like, “Thank you, great. So… you’re just going to hope that I forget.”
Rebekah: Yeah, I’ve been putting in a lot of work to meet what you guys wanted from me.
I pull my hair when I get anxious. So when I mess with my earbuds, [Zoey the service dog] thinks I’m going to pull my hair and she’s alerting to it.
Brianne: Yeah, you’re like, “Don’t worry. I’m just worked up in a normal way. It’s explained.”
Rebekah: And so I’m like, “What do you want me to do? Because I actually had a client lined up who was supposed to bring their dog from Florida to here for me to train. Now I have to deny someone their service dog because you just don’t want to put work in for me. Isn’t that the idea, that the school is preparing me for my career?”
Brianne: Yeah. Like I have a tangible thing that I want to build and I would like support.
Rebekah: Yeah, and it’s going to bring a lot of awareness on campus. The first person I talked to was very onboard with it because he’s been struggling a lot with our current ESA service dog policy is from 2011, and he said it needs a lot of updates and so we’ve been working hand in hand and getting those updates and making sure that everyone’s rights are protected but also people aren’t taking advantage of it and stuff. So he’s like, “I think this is great. That there will be more dogs on campus that people can actually understand and talk to people about and whatnot.” And I was like, “I’ll make presentations for you on the idea, on what you can and can’t do and stuff.” And so he was all on board, and then it just stopped as soon as it hit the next individual. I have one thing that’s keeping me going at this school, and of course you don’t want to be supportive of that.
Brianne: Yeah. Yeah, that sounds also super frustrating. I think this is… now I want to think so much more and ask so much more about the way that chronic illnesses and disability work within institutions like this. I know my alma mater, my old college, they just recently got somebody in to handle disability. I assume there’s been somebody for a long time, but I think they expanded the position or something. And now they’re just completely overwhelmed. And it’s a small college. I want to say it’s 1600 people.
Rebekah: Yeah, we’re only 1200.
Brianne: Yeah so it’s at that scale and they’re totally overwhelmed because, I mean, I think a part of it is a lack of awareness. My understanding is that some of it is people who have mental health stuff going on and are asking for accommodations. And there just isn’t a lot of precedent for how this all works. And I think that kind of sounds like what you’re running into too, differently. It’s like professors who have been teaching, maybe for you know 50 years or something, and they’re like, “Well, I’ve never had to do this before, so you must be taking advantage of me!”
Rebekah: Right, exactly.
Brianne: And you’re like, “Okay, well, maybe. But don’t you think this would be a weird way to do that?”
Rebekah: Yeah, when I’m sending you ER visits all the time, don’t you think that’s not enjoyable for me to just go to the ER?
Brianne: Yeah, and it’s one thing I know, I remember from being in college, certainly I’m sure professors get a lot of emails about fake grandparent deaths, right? Like people are like, “Oh, my grandparent just died.” And they didn’t. It’s because they want to turn a paper in late. So I understand why there would be a baseline level of skepticism. But when you’re like, “I am fully immersed in this system. I have advocates that I’m working with. I’m talking to people.”
Rebekah: And it’s been difficult because one of the individual professors who has been giving me a hard time is actually my academic advisor.
Brianne: Oh, and it’s someone that should be on your team.
Rebekah: Right. And it’s really hard because let me just give you a quick rundown of my college career. I came in healthy as a 17 year old, I started at age 17 playing softball, and I just had my birthday in September. My dad came to watch me play. It was great. We were having a good time. And my mom mentioned that my dad was really struggling. And my dad, I know you never met him, but he’s an ex-marine, but he’s just so full of life. Like he would give the shirt off his back for anybody, just full of life, smiling all the time, everything. And I was like, “My dad? Okay.” And she said, “Coming up to see you really helps. And he loves talking to you so maybe give him some extra phone calls this week or whatever.” The next Thursday I was feeling really really really sick. I made it to my first class, but after that I ended up going to Health and Wellness and they thought it was early signs of flu, they would have me come back in 48 hours if it wasn’t better. So I went back to my room and was lying down, taking a nap, and I guess my coach was trying to get ahold of me but couldn’t so she came to my room. And so I wake up with my roommate answering the door, and my coach, a police officer and a strange lady I didn’t know walk into the room. My first thought was, “I’m getting kicked out of school. I don’t even know what I did, but I’m out of school.” And my coach was like, “You really need to call your mom right now.” And I was like, “Well, I tried to call my dad earlier.” Trying to avoid the subject. And she was like, “No, you need to call your mom.” I was like, “Alright…” So I called my mom, trying to be all sly like, “Hey, Ma, what’s up?”
Brianne: Just a regular call!
Rebekah: Yeah. And all she says is, “Dad’s gone.” And I broke down. I fell to the ground screaming, crying. just like a movie scene. And so he was about to turn 41. And so my coach ended up driving me four hours home, my cousins met us there and they finished the drive. And I stayed in my grandparents’ house with my mom for a month while we were under investigation and everything. And so my freshman year started off with that.
Brianne: That sounds really, really hard.
Rebekah: Yeah, and so I was set back by that and then I got a concussion later that year and then that summer is when I got diagnosed with EDS.
Brianne: After your first year, right?
Rebekah: Yep.And then in the winter I have the first surgery. And then I got diagnosed with POTS. That next summer I had the second surgery.
Brianne: Okay, so you have had both also.
Rebekah: Yep. So then I was starting my junior year. Everything was going really well, and second semester hit and I started not to be able to walk again. There was a lot of pain in my left leg, and we met with the doctors and they were like, “Well, we really doubt you’re rejecting the hardware, it’s titanium. It’s very rare to be rejected.” I was like, “Okay…” I kept trying to push through, I ended up going back on crutches because I couldn’t walk. I was crying, just taking steps around my dorm room. And I ended up having surgery last summer to remove the hardware and they said there were visible signs of rejection. And so after that, I was walking, it was amazing. So that’s been the three years of my high school career. So then it’s really frustrating when all these big events that I’ve powered through, but then there’s these small events that they just keep throwing at me, and I’m like, “Look, I have enough going on on the side. Can we just… I don’t even care if I have a 2.0. Just give me a D and let me pass.” And it’s not like I’m not doing the work. I’m just not doing the work on the time that they think is acceptable.
Brianne: Yeah. It’s really hard when all of these things pack together, right, which I feel like is what you’re describing. And you’re like, “I just want a break. I just want a year where everything is the way that it seems to be for everybody else. Where it just works.”
Rebekah: Yeah. And that’s like, so when I found out I’m not graduating this year. I was like, “Well, alright.” Because me and my boyfriend have been together, it’ll be three years on the 10th. And he gets to graduate this year, which is great for him, that’s really exciting. But if he doesn’t end up around Marietta, I don’t know what I’m gonna do.
Brianne: Right. It totally changes your relationship, but your support system as well.
Rebekah: Exactly. I’m trying to open this business and we have a business competition, which is really exciting, we can earn up to $10,000 to help start our business. But we have to stay in Marietta. And so I’m competing in hopes that we could stay in Marietta. We both love Marietta, but if he doesn’t get a job in Marietta, there’s no way I can support myself with my health and trying to open my own business and everything. So just say I won, I would have to end up turning down the money which is just another “Oh, it could have been…” kind of thing.
Brianne: Yeah, like this stuff keeps getting in the way of stuff that I know that I want to do and can do. But with support, it’s okay to need support. And I guess it’s one of those things that you you just have to wait and see what happens this year. But like, you’re waiting and seeing a lot, probably and that is super aggravating.
Rebekah: Yeah. And I remember being with my counselor and they’re like, “You’ve got to learn to accept the things you can’t control and do things about the things you can control. And I get that, but 95% of my life is stuff I can’t control right now, which just makes me frustrated about how little control I have.
Brianne: Yeah, Yeah. And for me at least, one of the things that can be really hard is you’re like, “Okay, I get it. I get that I’m allowed to be angry and I am allowed to grieve about losses, like real losses and the loss of the functional body that I thought that I would have.” On the one hand, it’s totally okay to have all of those feelings about that. But on the other hand, you can’t have those feelings all the time because you have to learn to process them. But then you get mad that you’re like, “Why am I looking around at all these people who haven’t even had to deal with any of this shit yet?” Like, losing a parent is really fucking hard, chronic illness aside. And when you are in college, I know that you know this so I’m sorry for ranting at you about it but I feel strongly about this. Most people in that age group have never experienced anything like it. And they do not know, at all, how to even fucking respond. And it’s the same with bodies failing.
Rebekah:Yeah, it’s so frustrating. When I was learning to grieve, I like to talk about stuff a lot, that’s just who I am. And people you could see were visibly uncomfortable with it. They just stopped coming around. And I was like, “That’s not what I need in this moment. I need you to be here. I don’t expect you to say anything, I don’t expect you to get it. I just expect you to listen.”
Brianne: Yeah. You don’t have to know what to say. That’s okay.
Rebekah: Yeah. And I remember, you know, I trained Zoey myself, she’s a rescue dog. And a lot of people think I got her and labelled her a service dog just because I wanted a dog. But no that’s not what it is. Do you know how hard it is to admit as a 20 year old, “I need help.” I need help on a daily basis. And so I got her and she goes to work with me all the time. She works at the basketball games. And you’ve been to basketball games, they’re blaring, people screaming. She falls asleep. She falls asleep, she wakes up to alert, she goes back to sleep. But I have an individual who I kind of had a hard time with before, but I give everyone the benefit of the doubt with every single interaction. And so at halftime she was alerting, so she got up and did deep pressure therapy like she’s supposed to do. But she’s a 65-pound dog. She’s not very little. But that’s kind of what I need. And the person comes back and we’re pretty crowded at the table. Like I admit it, but we’ve always been crowded at the table. But I was shoulder to shoulder with the person on my left. She was on my right. There was a good foot and a half of room between us, and she goes, “Um, the dog or the bag is gonna have to move.” And I was like, “First off, the bag isn’t mine. You can move it, I don’t care. And second off, the dog is my service dog and she cannot move. She’s tasking at the moment. And she laughed and she goes “That’s a joke.” And walked away.
Brianne: You’re like, “Cool! Thanks for your informed opinion! Glad that I had you here to share it with me.”
Rebekah: And ‘m training a diabetic alert dog on campus right now. My boyfriend’s diabetic, so that’s convenient. We got her at three months old, so she’s very much a puppy. But I don’t know if you know this, 70% of service dogs that go into training do not pass. They’ll actually fail out. So that’s a pretty high fail rate. So one of the main reasons they end up failing is because they just get so frustrated with not understanding what we’re asking of them, and then we get frustrated, and it’s just this big cycle. And so they end up just stop trying, because they’re like, “I’m failing anyways, I might as well not.”
Brianne: Yeah, like none of it makes sense.
Rebekah: Yeah. So one of the things we do to kind of help combat that is called play to eat, and they work for everything they do. So we have a ball that has holes in it that you put their food in. And when they bat it around or throw it, food comes out, but not every time does the food come out. So it gets them used to failure, but it also gets them working for everyday things. And so I was doing this in the hallway with the puppy and our RA came up. She picked up the ball, poured the food out and handed it to the dog. I was like, “Okay, maybe she doesn’t understand.” Like I said, I like to give people the benefit of the doubt. And so I just explained everything I just said to you. And she goes, “I really doubt that that much goes into it.”
Brianne: Okay? Like…
Rebekah: I was like, “You’re right, they cost $20,000 because you can just pick them up off the street.”
Brianne: Like… what?
Rebekah: I don’t even know how to respond to people sometimes. And it’s pressuring when you have a bad relationship with your RA because you have to deal with them. I had Zoey out at work one day, and Zoey has a release command. Like when I’m not worried about me dropping or anything, even though I know she will still alert on her release command. But she was a release command where she can go greet people. She’s still on a leash and everything, it’s very controlled. But so I was in the mail room because I’m getting a job in the mail room and students were coming up, teachers were coming up to get their packages and I was allowing Zoey to go greet them. And of course, my RA came up, and I released Zoey to go greet her and she goes, “Zoey, stop. You’re working. I’m not allowed to talk to you.” And I was like, “Actually, I gave her the command, it’s my decision whether or not she approaches people.” And she goes, “I wasn’t talking to you.” But you were talking to my dog…
Brianne: Yeah, and obviously making a statement about me.
Rebekah: Right. And my thing was, if she had been like, “Oh, I’m not allowed to pet you.” That would have been different. But no, she made it like Zoey had done something wrong. And I was like, “No, actually, she was given a command to be allowed to come see you.”
Brianne: Yeah, to be friendly. And like in theory, it’s good if you recognize that when you see a service dog, you should not go and get down on your knees and try to cuddle with them. That’s not an appropriate response to a service dog, but also confusing them isn’t either.
Rebekah: Right, and if you’re worried about distracting her, you talking to her like that is very confusing and distracting.
Brianne: Yeah. You could talk to me and just be like, “Hey, is this okay? I thought that she couldn’t come and talk to me.” And then you would just answer, like a person.
Rebekah: Right, I get that all the time. People are like, “Oh, are we allowed to pet?” I’m like, “With her I have no problem. But I do suggest with other teams that you ask, or we have patches on our dogs a lot. Read those. If they say ‘Do not pet’ then don’t ask, it gets frustrating.” And so I take time to educate people. I was at church one day, and at church you shouldn’t even be talking in the first place. It’s church, it’s mass.
Brianne: You don’t need to.
Rebekah: And so I was a row ahead of this lady. IAnd I could tell she was like, “Oh, dog!” Yeah, I have a dog, thanks. And so I’m giving her commands and stuff, like having her sit, having her tuck under the pew. And this lady’s sitting back there like, “Oh, I know I can’t talk to her.” I’m like, “Okay, good. Leave her alone.”
Brianne: Cool!
Rebekah: And I’m trying to focus, you know, this is mass, I’m here for a reason. And then I keep hearing her go [tongue clicking]. And I’m trying to ignore her. I gave Zoey the focus command, she focused on me. And I was making it very obvious I did not want Zoey looking at her. And she keeps doing it. She starts giving kissing noises. Well then Zoey starts alerting that I’m about to pass out, which is pretty common in church because I don’t stand for very long before passing out. So she gives the alert. I was like, “Okay, okay.” I’m waiting for a good time to walk out because I hate walking out in the middle of a reading. And so I walk out, not two minutes pass by, and this lady follows me out.
Brianne: Cool. Cool.
Rebekah: Alright, whatever. So I’m sitting on the ground with Zoey on top of me doing deep pressure therapy, and she goes, “I could tell you were about to pass out. I’m a registered nurse.” And I was like, “Oh, so distracting my service dog felt like the right reaction to me about to pass out?” And first off, you were behind me. How the hell did you know I was about to pass out? And she was like, “Do you want me to stay with you?” And I’m like, “No, no, not really. I’m good.”
Brianne: “This is normal.”
Rebekah: I don’t know you! And so it was just one of those things. Like, I don’t normally have a lot of problems. I don’t really mind if people ask questions. But where’s the logic in this interaction at all?
Brianne: Yeah, there are just moments where you’re like, “I would just like a lot of handouts to give to people. Like pamphlets to just be like, ‘Read this. Don’t talk to me until you have.’ And like, internalize it. Thank you.”
Rebekah: It’s so funny because I’ve actually had service dog teams, a lot of them will come and be like, “Hey, I don’t know what to do in this situation, do you have any suggestions?” And a lot of psychiatric teams have a really hard time with how much attention they get as a team. They don’t like it when people come asking questions, it induces their anxiety, their PTSD, whatever. And I said you can make pamphlets or little cards that say, “Hi, my mom feels anxious when meeting new people. Here’s some information. If you have any questions, you can contact us at…” and list their social media. Because a lot of times people don’t have as many problems over the screen versus face to face. And people thought it was a good idea. And then I had a team who did that like I had suggested, and they were like, “Another team just attacked me for having an ID.” And I was like, “You don’t have an ID. It’s handmade.” Because service dogs actually have zero registration or ID. It’s actually not a thing.
Brianne: Right. And isn’t there something about, there’s some fraudulent stuff around it, which is also why it could be controversial?
Rebekah: Yeah. And so the team attacked this other team, which I hate. Half the community is super supportive and half of them are extremely judgmental. And so I reached out to this other team and I was like, “Hey, IDs are not legit, but that doesn’t mean someone can’t carry information about their team. It’s not illegal to have identification, just like vests aren’t required for service dogs but that doesn’t make us illegal for using them. We don’t give each other a hard time about the vest. Don’t give each other a hard time about an ID or a pamphlet.” And they were like, “Well, it just gives us other teams a harder time.” Well, if you would just take a few seconds to educate people and say “No, it’s not required. Some people carry one.” It’s not that difficult. So then they just started attacking me, and they were like, “Well, I can tell you’re a fake.” And I was like, “Okay.”
Brianne: Cool, thanks.
Rebekah: They were like, “Your vest is very generalized. My daughter made a good point the other day that when people are in it for the long run and they’re seriously sick they have customized stuff.” And I was like, “You know, maybe you shouldn’t teach your daughter to judge on appearance. A lot of us can’t actually afford custom gear because we’re too busy paying our medical bills.”
Brianne: Yeah, and because it’s nutty expensive, isn’t it?
Rebekah: Yeah. No, I got a new setup for her because I obviously want a custom setup because they’re custom for a reason. But it took me a year of saving to get because it ended up being like, $80.
Brianne: Yeah. Just not your first priority when you have regular ER visits and surgery and recovery and your own mobility aids.
Rebekah: And like, college.
Brianne: Yeah, right, and college!
Rebekah: And they’re just like, “Oh, don’t tell me how to raise my daughter.” And I’m like, “Don’t tell your daughter it’s okay to judge people!”
Brianne: Yeah. The gatekeeping culture in disability, chronic illness and then service dogs in general is so… I mean, I’m sure you must see it more on Instagram, too, because it definitely… Instagram feeds it in a way, which isn’t a problem with Instagram, but just the way that it’s set up.
Rebekah: And we’ve had a lot of issues where we’ve reported people for doing something and Instagram’s like “We don’t see it! It doesn’t count!” And we’re like, “Okay, when you have eight people reporting the same thing, you can see there’s an issue.” And it’s so frustrating because we have the same thing with our school, we have teachers who are like, “Um, I don’t know.” But you can’t actually say no to me. I’m bringing my dog. I was just asking out of politeness.
Brianne: Yeah, I’m warning you.
Rebekah: Yeah. But I do remember for like the second class I brought Zoey to, I emailed all my professors, I was so prepared. I was like, “Hey, just a heads up. There might be a service dog in here. ARC knows about it, blah blah blah.” And I walk in and I was like, “That’s not the professor I emailed. Oh shit.” And so I met with him after. I’m like, “I’m really sorry. I emailed everyone in advance, I don’t know what happened, my schedule just said the wrong person.” And he was like, “ I was confused because a dog walked in. But then I saw she was obviously a service dog and I was like, ‘Alright, she’s here to do her job.’ And I ignored her.” I was like, “Well, that’s the right response. Thank you.”
Brianne: Like sure, if someone brings in a hyperactive puppy, that is jumping all over everybody and barking. You’d be like, “This is a weird thing to bring to a class.” But if someone brings in a quiet dog that just lies down and looks at the person they’re with, you’d be like, “Okay, there’s probably something else going on here.”
Rebekah: It was funny because, like I said, I’m training that puppy this year and so many people are like, “Why didn’t you bring the puppy?” And I’m like, “So many reasons. First off, it’s not for me, I’m not diabetic. So her being in class with me would not be useful for anybody. And second, she’s four months old and not potty trained.”
Brianne: Yeah, she’s not ready for that kind of pressure.
Rebekah: So taking her to hours of class. Yes. Yes, that seems legit. They’re like, “But she’s so cute!” That doesn’t matter!
Brianne: That’s not what’s happening here. Yeah. God, I feel like there’s probably so many more things to be said about service dogs. But yes, what a world. Okay, we are at right about an hour, so I want to get into the whatever else you want to talk about phase of things. Yeah, it’s the exciting part. It’s not really exciting. But mostly I feel like we’ve covered the chronological, and then a lot of the details around both being in an institution, which I’m super fired up about and now probably want to read even more about after talking to you because I haven’t talked to anybody who is currently in school yet. And also about service dogs, which is awesome, and if you want to talk more about what you’re doing, or maybe even when you know more because I can link to your stuff. But is there anything else that we haven’t covered yet that you feel like is also an important part of this? Or that’s come up all we’ve been talking. It’s okay If the answer is no.
Rebekah: I mean, I can discuss some of the doctor things I’ve run into. So like I said, I have very regular ER visits. But I actually went. I’ve gone twice for this now. I have a chest pain that happens when I’m breathing, at random. Very scary, like it hurts to breathe. And so I went in one time, and they ran all these tests, and they were like, “There’s nothing we can do for you. Go home.” And I looked up at my monitor and my breaths per minute was two. And my boyfriend was like, “Um, what? You can’t release her when she’s breathing twice per minute.” And they were like, “Come back if it happens again.” And my boyfriend’s like, “It’s still happening.”
Brianne: “It’s happening right now.”
Rebekah: “Do you want us to walk to the parking lot and then back in? I’m confused.” And so we ended up thinking whenever, they’re not gonna do anything for us. But it’s gotten to the point that that’s happened so many times with different things, like I’ve gone in with pain and they’re like, “Well, we can’t find anything wrong. Go home.” So when I have pain, I was literally sobbing on my bed, and my boyfriend’s like, “We’ve gotta go to the ER. Something’s not okay.” And I was like, “I don’t want to. They won’t do anything.” And he’s like, “Well, I don’t know what else to do. I can’t do anything for you. So we’re going to take you anyway.” And the entire time I’m like, “This is a waste of money, it’s a waste of time.” And luckily they actually did something for it that time. But they ended up putting me on a medication that lowers my blood pressure, which with POTS I can’t have. So the next three days, I couldn’t sit up in bed without passing out, let alone stand. And so I got t urology, and I was like, “Listen, I know kidney stones can be intense but something’s not okay. I can’t stand up.” And she was like, “You can’t be on that medication.” Like, thanks for you finding it! Because when they give it to you at the ER they give it in a little baggie, it doesn’t have any side effects or anything, they’re just like, “Here, take this.” Okay. But, yeah, it was just so… they’ve always asked, “What are your preexisting conditions?” One time I said, “I have EDS. It’s a connective tissue disorder.” Because I know we’re a small town, people probably haven’t heard of it. And they were like, “Well, what’s that have to do with anything?” And I was like, “Connective tissue is literally everywhere in your body. What do you mean ‘What does it have to do with anything?’”
Brianne: Yeah, it has to do with everything that happens in my body.
Rebekah: Yeah, I was like, “Um, a lot?” I don’t know what you want me to say to you. And so when they messed up with the POTS thing, like I had mentioned I had POTS and they still gave that to me. It’s so frustrating because what if they end up giving me something that puts me at risk? I was at serious risk when I was passing out every day. I ended up going to Health and Wellness and I was like, “Listen, something’s not right. I need my IV.” And they were like, “Well, your vitals are normal. We can’t give you an IV.” And I was like, “It’s not morphine. I’m asking for you to put saline solution in my body. You’re right. It’s very risky.” And I was like, “Not really, just give me the IV!” And they said my vitals were normal. But my heart beat was 98 when I was laying down. That’s not normal. I said, “What’s happening is my blood pressure is fine. But my blood volume is too low.” And they’re like, “Well, we can’t.” So they refused to give me an IV.
Brianne: Yeah. You’re like, “I don’t have a lot of options here!”
Rebekah: Yeah, so now I’ve been discussing with all of my doctors back here. I’m like, “Is there anything I can do, like get a note from you or something that says if I come in and ask for an IV they’ll give it to me?” And they’re having a hard time. They’re like, “Uh, not really.” I’m like, “Okay, but I don’t want to go to the ER because the ER’s going to do the same thing.”
Brianne: Yeah. Having people that aren’t informed or don’t recognize things. The ER thing I think is really interesting, because I think a lot of people with chronic pain went into this. We were like, “I’m not obsessed with getting pain medication in and of itself, which is what the ER stigma is, it’s so hard to fight. But I would like to not be in pain anymore. And/or I would like you to tell me what is causing my pain.” That’s not an unreasonable thing to be looking for. And if they’re like, “Well, your tests are normal, so go home!” And you’re like, “This hasn’t solved anything. What do you want me to do?”
Rebekah: I had one actual doctor who sat down with me and he was like, “I’m so sorry.” Because I was screaming in pain. And I was like, “I don’t think you understand. I handle pain very well. I’ve had my femur and tibia broken in both legs and not had this much pain.” He was like, “No, I can really tell and I’m sorry. It’s our policy that if it’s not life threatening we send you home so that we can open up the bed.” And okay, at least someone apologized. At least they realized I’m a human being. And I don’t know if you’re involved with the webe warriors at all.
Brianne: I’m not. I know about them a little bit, but I’ve barely scratched the surface.
Rebekah: Yeah, so I actually just got invited to be a member, which I’m hoping when I get back on campus, the package will be there and everything. But they’re very much trying to make health care human care. Because we’re not numbers, we’re not just symptoms on a piece of paper. We are humans and we want to be treated that way. So they’re getting our stories out there, just like you, and just trying to get stuff changed. But they have segments called “What the fuck, Doctor?” So it’s like, “What the fuck, doc?” And it’s just all these stories of like, what were you thinking in this situation? So they’re pretty cool, and I’m hoping to learn more once I actually get the packet and get involved. They have different pods. Like for those with EDS, those with diabetes, those with undiagnosed but know something’s wrong, so it’s pretty cool.
Brianne: Yeah, yeah. there’s just so much. There’s so many arms to what can be done to make people’s lives better in terms of intervening with the medical system, on the insurance side and also on the doctor awareness side to remind doctors that they could have empathy. And then also friends and family and telling them, “Hey, chronic illness is different than what you think. Here are some ways that you could be better about it.”
Rebekah: Yeah. I think there’s, like you said, just so much to it. And you mentioned insurance. Service dogs aren’t covered under insurance at all. Families are paying the $20,000 out of their pocket because they’re considered an option. So like say someone with diabetes. Well they have the option of just having a BTM and all this other stuff. But that doesn’t work for everybody. There’s not just one option for everybody, and service dogs are normally a last resort. So when someone’s asking for them, it’s normally pretty drastic that they’re going to need them. So it can get really frustrating, because I’ve met with so many families who are like, “My daughter or my son could really use this service dog. Here’s what they’re going through.” And I said, “Okay. I’ll write up what tasks I could help you with and how I could train them. And then I would give you an estimated cost.” And I actually offer a lot of different programs where I could do assisted owner training where they can just skype me and tell me, “Okay, this is the problem we’re having or this is where we’re at, what’s our next step?” And I do partial spring where they do the basic obedience at their house, and then they send the dog to me so that they’re not paying for the entire two years, it’s a little less. So it’s just ways I can help them. We can get rescue dogs, we don’t have to go to the $3000 breeder or they could send it to me. But there’s so many people, I still give them those options and they’re like, “I just can’t afford it. I can’t do it. We’re paying for surgeries, we’re paying for ports, we’re paying for liquids everyday.” And I’m like, “I get it.” And that’s what I’m really hoping to bring to the service dog community. And the service dog training community specifically, is that you look at a lot of these programs and their head trainers don’t have a disability. They don’t understand the need. The absolute… it’s not like “I want a service dog.” It’s “I need a service dog to survive.” And I feel like I get to bring this unique perspective of like, “I’ve been where you are. I know that you’re in this dark place, but there is a light at the end of the tunnel and we’ll get you there together.” So I’m hoping that could make a little bit of a difference.
Brianne: Yeah. Yeah, that’s so important. Having people involved who understand what the value is. That was very removed language, But, you know, Yeah. You know about it in a way that a lot of people don’t.
Rebekah: It’s not just a job to me.
Brianne: I mean, that sounds like it will be a very good thing, even if it takes you a while to get the details ironed out on your campus for now. But you have your whole life also, post campus too. That part is great. Thank you for talking to me. I so appreciate getting to talk to people about all of this stuff. It’s like we’re all going through these things that are overlapping, so everyone’s story is so different. But also, some of the elements are so similar and I really, really appreciate being shared with because I know that showing up to a skype call with a stranger, an unshowered stranger today.
Rebekah: I’m unshowered too, don’t let me fool you.
[guitar riff]
Thank you for listening to episode 15 of No End In Sight! In the next episode I’ll be talking to a woman who lived with undiagnosed Crohn’s Disease well into her 30s and is still trying to nail down a treatment protocol that works for her body. Make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts to find out when new episodes are released.
I finally made a dedicated instagram account for the show if you want to give it a follow. Right now I’m posting about all of our back episodes with notable quotes and other details, and I’m sure it will grow and evolve as I get caught up. You can find it @no.end.in.sight.pod.
And don’t forget that 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 share resources about building a business while prioritizing our health.
And finally:
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’m slowly working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.