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Dysautonomia - Day in the Life with Oliver Schofield · Accessible Community

• 0:00
  Taylor: Welcome to the Day in the Life series on the Accessible Community Podcast, where we will be exploring disability and accessibility in everyday life.
• 0:11
  Taylor: Each podcast episode is a new lens to broaden our understanding and drive inclusion.
• 0:17
  Taylor: For show notes, go to accessiblecommunity.org slash podcasts.
• 0:23
  Taylor: Let's make accessibility part of every day.
• 0:27
  Oliver: It's nice to explore what I can.
• 0:29
  Oliver: I learned more about Asian cuisine initially because I was allergic to corn for a long time, and that's just in pretty much everything that's American, especially anything that's like semi-prepared, you can buy off the shelf and a lot of preservatives.
• 0:49
  Oliver: So like it's definitely shaped my interests and what I've learned and what I've come to prefer over time.
• 0:54
  Oliver: But I do enjoy it.
• 0:57
  Oliver: I think it's it's nice to take time for myself in that way and like be sure that um I'm gonna feel okay the next day.
• 1:05
  Taylor: Hey everyone, welcome to another episode of Day in Life.
• 1:08
  Taylor: And this is gonna be our second episode talking about disautonomia.
• 1:12
  Taylor: And October is disautonomia awareness month.
• 1:15
  Taylor: So it worked out very nicely with the schedule.
• 1:18
  Taylor: Um, so as usual, I'm your host for this series, Taylor Dorward.
• 1:22
  Taylor: And today I'm joined by Oliver Oliver Zet Schofield.
• 1:26
  Oliver: Schofield, yeah.
• 1:28
  Taylor: Nice.
• 1:28
  Taylor: Um well thank you for joining us, Oliver.
• 1:31
  Taylor: I really appreciate it.
• 1:33
  Taylor: And so I feel like by now any normal listeners know enough about me.
• 1:38
  Taylor: So let's just hop right over to you and have you introduce yourself.
• 1:44
  Oliver: Well, hello everyone.
• 1:46
  Oliver: Um, my name is Oliver Schofield.
• 1:48
  Oliver: I write grants for accessible community and other community organizing projects.
• 1:54
  Oliver: I'm really passionate about um how we can organize ourselves um to better support our communities and really thinking about um community organizing as something that happens from the ground up.
• 2:12
  Oliver: And so I um am really grateful to be a part of Accessible Community in um helping us find the resources to keep doing this incredible work.
• 2:23
  Oliver: Um and yeah, it's great to be a part of that day-to-day in my personal life.
• 2:28
  Oliver: Um, I really like to cook, I like to play piano.
• 2:32
  Oliver: Um, I consider myself a very creative person, and that's something that's really meaningful to me.
• 2:39
  Oliver: And um yeah, it's been really great with accessible community and with other work that I do to connect with other like-minded people and really find a sense of community and figure out what that means for me as I navigate my changing disabilities.
• 2:57
  Taylor: That's awesome.
• 2:58
  Taylor: And uh I have a piano, I just do not play it.
• 3:02
  Taylor: I've uh tried to pick it up a few times, but I haven't fully committed to it yet.
• 3:08
  Taylor: So we'll see if I get there.
• 3:10
  Taylor: Um, and cooking is another thing I want to get into, but just haven't had the motivation to do it quite yet.
• 3:17
  Taylor: So um, but you had mentioned about the grants and uh congratulations.
• 3:22
  Taylor: Uh, I know you're working a long, a long time on that task are grant and got it uh granted that.
• 3:28
  Taylor: So uh congratulations for that.
• 3:31
  Taylor: That's awesome.
• 3:32
  Oliver: Yeah, absolutely.
• 3:33
  Oliver: Um, we'll be excited to share more details on our work moving forward once all of the um I's are dotted on all the T's are crossed, so to speak.
• 3:44
  Oliver: Um, so we definitely watch our pages for more on that in the months to come.
• 3:50
  Taylor: Yeah, it's very exciting and greatly appreciate what you do.
• 3:54
  Taylor: Um, so in our first episode where we talked to Amanda, we discussed how dysautonomia is an umbrella term.
• 4:02
  Taylor: And so uh would love to know could you explain where you fall under the umbrella?
• 4:08
  Oliver: Mm-hmm Yeah, so I have been diagnosed with hypermobility spectrum disorder, which is um it's described by people with dysautonomia as being pretty much the same pathology to hypermobile EDS or Hitler's download syndrome.
• 4:27
  Oliver: Um what hypermobile which I'll I usually just use the acronym HSD for short.
• 4:34
  Oliver: Um what HSD does in the body is there are some um autoimmune, there's it means there's autoimmune activity in the joints, and that can cause frequent injuries like dislocations or subluxations, just like joint specific injuries to do with the cartilage in the tendons around the joints.
• 4:58
  Oliver: Um, it doesn't usually affect the muscles as much, but just having that weakening of the cartilage can make someone a lot more susceptible to injury.
• 5:07
  Oliver: In addition to that formal diagnosis, um, I have been back and forth uh seeking medical care over the last few years for my allergies and also for some issues I've had related to my blood pressure.
• 5:21
  Oliver: Um, but we haven't really landed on a specific diagnosis for either of those issues yet.
• 5:26
  Oliver: Um, it's really common in the diseltonomia community to experience delayed diagnosis well after symptom onset because um with I think I think there's limited um awareness by doctors of uh exactly how to go through that diagnostic process.
• 5:45
  Oliver: And um in the case of uh cardiovascular issues like POTS, um, POTS is only diagnosable by a tilt table test, which requires highly specialized equipment.
• 5:58
  Oliver: And I my experience has been that I haven't been able to find a doctor who knows where to source that equipment.
• 6:04
  Oliver: Like I've asked for referrals and done my own research, but I just haven't been able to find a site to go do the diagnosis, even if I were paying out of pocket.
• 6:12
  Oliver: And so there are there can be a lot of reasons why people go to undiagnosed.
• 6:17
  Oliver: And I um, you know, I do the best that I can to manage my symptoms, avoid triggers and things like that.
• 6:24
  Oliver: Um, but it's definitely different for my undiagnosed symptoms than it is for my hypermobility.
• 6:30
  Oliver: Um, in diagnosis, I would say really helps paint a clear picture of understanding where the symptoms come from and how we can really treat them at the source before they get into like cascading issues in secondary um conditions.
• 6:45
  Taylor: Very interesting.
• 6:46
  Taylor: And I I find it really fascinating that even in what we would consider a first world country, like still having lack of access to get that diagnosis, uh just that's really interesting.
• 7:00
  Taylor: You don't hear that quite as often.
• 7:02
  Taylor: Uh so I think that's interesting to point out, and I'm glad you did.
• 7:07
  Taylor: And you had mentioned about triggers.
• 7:09
  Taylor: So, what are some things or environments or anything like that that trigger like a dysautonomia?
• 7:15
  Taylor: Would you call it like a flare, like with pots, or is it different terminology?
• 7:21
  Oliver: Um, I would definitely use the flare terminology.
• 7:24
  Oliver: Um so for I I try and think of my symptoms into like three different buckets of like allergy issues and cardiovascular issues and joint issues.
• 7:35
  Oliver: Um, and that helped me kind of understand uh different treatments that I might need to seek out.
• 7:40
  Oliver: So for um joint issues, uh I am susceptible to injury even while doing really normal day-to-day activities.
• 7:50
  Oliver: One time I subluxated my first rib, the uppermost rib on my right side, while I was driving.
• 7:57
  Oliver: I wasn't doing anything particularly, you know, weight-bearing in nature, even really moving around.
• 8:03
  Oliver: I was holding pretty still.
• 8:04
  Oliver: Um, so I don't know what shifted in my body.
• 8:07
  Oliver: Maybe I just shrugged at a particularly sensitive time or something, and that just caused it to pop out of place.
• 8:14
  Oliver: And I needed eight weeks of physical therapy to get back to normal.
• 8:18
  Oliver: Um, so with the hypermobility, it's um it's trying to be really careful about exertion and like what kinds of exercise you look for in order to prevent those injuries is really, really important.
• 8:33
  Oliver: Um, there is with current medical knowledge, not it seems as far as we know now, um, there isn't a way to like make me more resilient um to avoid injury other than just regular exercise on a regular basis.
• 8:51
  Oliver: Uh, but then there is the risk also of overexerting myself um there.
• 8:57
  Oliver: So it's important for me to work with uh physical therapists who are knowledgeable about hypermobility to make sure we're staying within super, super safe ranges of exertion when I am setting aside time for regular exercise and in my day-to-day life too, just making sure I don't hyperextend something in the wrong way or don't um try and carry a heavier weight than is safe for me and noticing right away if something's wrong to back off.
• 9:25
  Oliver: Um so it's it's it's tough to like have to limit my exertion like that.
• 9:31
  Oliver: Um I am 22 years old, so I'm definitely in a phase of life where um I'm always wanting to run around and go do fun things and uh you know, like buy new furniture and things and like start to um explore more independence.
• 9:49
  Oliver: Um but uh sometimes it can be real easy to just go, I have this whole big plan, I'm gonna spend all day at IKEA and I get home and it just, you know, like my body just can't do it.
• 10:00
  Oliver: Um so definitely just like pacing, I think is really important with that to avoid flare-ups or injuries.
• 10:08
  Oliver: And um with allergies, um, my allergies can be a little bit unpredictable.
• 10:15
  Oliver: Um, and that sometimes it will have reactions to things that are normally not a problem for me.
• 10:22
  Oliver: Um, we're still figuring out why exactly that is.
• 10:25
  Oliver: Um, I think that uh one thing um that if if you're listening to this podcast and that sounds similar to your symptoms, one thing to know is that preparing the exact same ingredient in different ways can impact the histamine levels of the ingredient.
• 10:42
  Oliver: And if that sounds like information it would be useful to know more about, definitely talk to a nutritionist about it.
• 10:49
  Oliver: Um I've been able to speak with a nutritionist a little bit about trying to navigate like lower histamine foods.
• 10:57
  Oliver: Um, but it's um it's it's hard to find a middle ground between like um eating only the super, super safe, safe stuff and like eating where whatever I want.
• 11:08
  Oliver: Like it's hard to know exactly how much is too much or like where my limit is.
• 11:13
  Oliver: Um, I know that I consistently react to sesame and I sometimes react to raspberries and tomatoes, and I'm like, that's such a random list.
• 11:23
  Oliver: Like it's hard to understand why those, and I definitely I've only been allergic to sesame for less than a year.
• 11:31
  Oliver: Um, it just came on very suddenly that I started having this allergy and figuring out how to you know remove that very common ingredient for my diet.
• 11:40
  Oliver: So that's like a lot of dietary management, again, like very much self-managing of things.
• 11:46
  Oliver: I'm also now on a daily antihistamine to try and reduce my sensitivity somewhat.
• 11:52
  Oliver: Um and uh yeah, like that also I would say requires a lot of lifestyle changes to like try and avoid flares.
• 12:01
  Oliver: Um and with uh with cardiovascular issues, I would say heat um is a big trigger for me.
• 12:11
  Oliver: Um I can feel really, really lightheaded in the heat and have a hard time going from sitting to standing, have a hard time squatting down.
• 12:20
  Oliver: Um and that in turn can make it harder to exercise, which makes it harder to manage other symptoms, you know.
• 12:26
  Oliver: Um, so like being mindful of how long I go out at certain times of year, um, I definitely can handle more in the winter months.
• 12:38
  Oliver: I'll like be way more comfortable leaving the house and knowing even if uh you know that it's pretty cold out or I didn't manage to bring a warm enough coat, I'll like I'll be fine because I won't have to deal with that lightheadedness.
• 12:53
  Oliver: Um if I feel lightheaded um and I'm already out and it'll be a while before I can go home again.
• 12:59
  Oliver: Um, you know, I'd like I might have to find a corner store or something to rest and get a little bit of air conditioning and like probably buy a gator aid, something like that.
• 13:10
  Oliver: Um and uh yeah, it's like it's it's I would say it's easier to manage just because it's seasonal.
• 13:18
  Oliver: Um it's not a year-round endeavor as much from in my experience.
• 13:25
  Taylor: That's very interesting, the different how the seasons can affect how you manage that stuff.
• 13:30
  Taylor: And um, when it comes to cooking, is there a reason you enjoy cooking because you have that control of what you're ingesting due to those allergies?
• 13:42
  Oliver: I think that's definitely where it started.
• 13:44
  Oliver: Um I uh had the experience when I went off to college um that uh a lot of the food that was available in the cafeteria and like on campus um made me really feel really sick.
• 14:00
  Oliver: And I I actually broke my lease on my in on campus dorm uh residence um so that I could move to an apartment and be able to cook my own food in a clean um and more controlled environment.
• 14:15
  Oliver: Um and that was like a really big uh financial push for me to like be able to understand what I was actually eating and get full information about how everything was prepared just by being able to cook things myself.
• 14:31
  Oliver: Um and that uh really turned my health around.
• 14:35
  Oliver: I think that I would not have been able to finish school um if I hadn't been able to cook for myself.
• 14:42
  Oliver: And um I know that a lot of people um deal with a lot of food insecurity in school for many reasons.
• 14:50
  Oliver: Um I definitely I know people who are gluten-free and who have who are diabetic, who are college students and for really similar reasons, like really struggle with the prepared food-only, um, full service kitchen sort of orientation of college campuses.
• 15:07
  Oliver: Um and uh yeah, so I I got started cooking because of my disability.
• 15:13
  Oliver: Um, and now it is definitely I I like to cook a lot of East Asian dishes.
• 15:18
  Oliver: Um I miss being able to throw sesame into everything, but um, I really like soy-based products.
• 15:25
  Oliver: Um, and uh yeah, it's it's nice to explore what I can.
• 15:31
  Oliver: Um I learned more about um uh Asian cuisine initially because I was allergic to corn for a long time, and that's just in pretty much everything that's American, um especially anything that's like semi-prepared, you can buy off the shelf in a lot of preservatives.
• 15:50
  Oliver: So like it's definitely shaped my interests and what I've learned and what I've come to prefer over time.
• 15:56
  Oliver: Um but I I do enjoy it.
• 15:59
  Oliver: Uh I think it's it's nice to take time for myself in that way.
• 16:02
  Oliver: I'm like be sure that um I'm gonna feel okay the next day.
• 16:06
  Oliver: Um it is it's definitely nice.
• 16:10
  Taylor: Nice.
• 16:11
  Taylor: And uh even for me, spending a lot of time immersed in the accessibility and disability space, um, food often gets overlooked by me and many others as a form of accessibility and accommodations, having different food selections.
• 16:28
  Taylor: And for me, I go to a lot of conferences, and there's one conference that I really like to go to, and I realize a big part of that is their lunches every day, is just a grab and go.
• 16:41
  Taylor: And all the others are a buffet where oh, and it's also important context for any new listeners.
• 16:47
  Taylor: I'm I'm partially blind, so going through a buffet line it can be fairly anxiety-inducing.
• 16:54
  Taylor: I can't tell what things are, and even if I can, I might not be able to find the tongs or spatula to get the food and I'm honing up the line, and so that could some a lot of times I just skip lines and I'll just be like, I'll go in my room and order room service because it's just not easy for me to do.
• 17:14
  Taylor: So I I feel like in that way I understand in some in some aspects what that's like, and it's interesting hearing a different perspective on that and how it's also shaped your hobbies.
• 17:28
  Taylor: Uh, because for me, before I had my blindness, I was fairly active, like mountain biking and baseball and sports.
• 17:38
  Taylor: But after I attained my blindness, uh most of my hobbies went away because I couldn't really do them anymore.
• 17:45
  Taylor: So then I started to realize I just gotta find new hobbies that suit my new new normal, which so like mixology, I'm I still make a mess, but like I can take my time and make cocktails and play around with different recipes and like singing.
• 18:03
  Taylor: I love to sing, and you don't really need to see to sing.
• 18:07
  Taylor: So uh it's been fun talking to people like yourself where hobbies have been shaped by your certain limitations in certain areas.
• 18:18
  Taylor: So I think that's pretty interesting.
• 18:21
  Taylor: So, what would be like your favorite meal to prepare?
• 18:24
  Taylor: I know you were saying you like East Asian uh meals.
• 18:29
  Oliver: That's uh a tough question.
• 18:32
  Oliver: I think one that I uh always like to go back to is um this honey soy um chicken.
• 18:41
  Oliver: It's um a recipe my mom made a lot for me growing up.
• 18:46
  Oliver: Um, and uh what I like about it is that there's um flour that you mix in and butter you mix in.
• 18:55
  Oliver: It's like very um, you kind of make this slurry that you mix in combining with the chickens, and then you bake it in the oven so that the sauce slowly congeals over everything um as it's cooking.
• 19:11
  Oliver: And I feel like it comes out a really nice, like glazed texture.
• 19:15
  Oliver: Um and it's also really easy because um you just you put it in the oven for an hour for everything to kind of come together.
• 19:25
  Oliver: Um so I like the uh it's it's easy prep and um it always comes out really nice.
• 19:32
  Oliver: Um you compare it with a bunch of different vegetables, um and the ingredients are super simple.
• 19:39
  Oliver: So it's if I ever am at a point with my health where I need to swap something out, um, it's doable in a way where even something someone else might consider really simple, like uh mac and cheese.
• 19:52
  Oliver: I'm like, well, how am I gonna thicken the sauce?
• 19:54
  Oliver: Um, you know, uh if I because I can do cornstarch for a long time, that was took a lot of learning to figure out how to handle that um in in the kitchen.
• 20:05
  Oliver: Um so uh yeah, I like it's it feels like a very accessible recipe, um, both in terms of my disabilities, but it's also just like you know, difficulty and complication.
• 20:18
  Oliver: And it feels really like comforting, brings back memories for me.
• 20:23
  Oliver: So I think there are a lot of reasons why I really like that recipe.
• 20:27
  Taylor: Nice.
• 20:28
  Taylor: Yeah, and and I like how you uh explain that, where it's uh trying to think of the best way to that I interpret it more.
• 20:37
  Taylor: So it's like a good benchmark where you can adjust things if you need to.
• 20:42
  Taylor: Uh, because from what it it seemed, but it seemed like uh allergies can pick up out of nowhere for you at times.
• 20:49
  Taylor: Yeah.
• 20:50
  Taylor: So having that flexibility, I imagine, is is nice.
• 20:55
  Oliver: Yeah, yeah, definitely.
• 20:58
  Taylor: And so you had mentioned earlier about like PT and exercising in certain ways.
• 21:03
  Taylor: So what are like some daily, even if it's not like truly daily, but what are some common exercises you do to either uh kind of rehab something that happened or to prevent uh different things from happening?
• 21:21
  Oliver: Um, that's a good question.
• 21:23
  Oliver: I think I'm still trying to figure out the best exercise routine for me because um I have um and I haven't been able yet to get my insurance to approve an ongoing relationship with a physical therapist.
• 21:42
  Oliver: Uh the default um way of engaging in physical therapy is based on acute injuries.
• 21:49
  Oliver: If you have an acute injury, like a specific shoulder injury or hip injury or something, um you can go, it depends a lot on the state that you're in.
• 21:59
  Oliver: Um But I um lived in New York for a while and then in Virginia and New York.
• 22:06
  Oliver: You can go to a physical therapist for six weeks.
• 22:10
  Oliver: And then after that, you need a doctor's note to continue.
• 22:13
  Oliver: And the doc it's up to the doctor to decide how many weeks of physical therapy would be appropriate.
• 22:19
  Oliver: You reach the end of that time and you still want to be in physical therapy, you have to go back to the doctor and be like, hey, like the issue's still ongoing.
• 22:26
  Oliver: But the physical therapist will also like assess your um your health and uh to like prove to the insurance that it's still necessary for you to be in physical therapy.
• 22:38
  Oliver: And it's really um, I mean, I feel like when I am able to see a physical therapist, um, if I have like a distinct subluxation, that goes pretty smoothly and we're able to like tackle the immediate issue, but there's not a lot of leeway, you know, in a 30-minute appointment to like talk about other concerns.
• 23:01
  Oliver: And there's not really space that's created within that uh structure insurance-wise, to just go to see a physical therapist for a checkout.
• 23:12
  Oliver: That's something I would really like to see change.
• 23:14
  Oliver: Um, I think seeing a physical therapist should be just as normal as having a check-in with your general practitioner or a nutritionist or a gynecologist.
• 23:23
  Oliver: Like there are these specialists who are out here to help us with specific issues, but it's also good for your health to just have a regular check-in with an expert to make sure you're on track.
• 23:36
  Oliver: Um and uh people like me might need more support, but also I would love to imagine a world where people get covered by insurance an appointment or two a year just to check in about their fitness and to talk about like specific exercises and things that can meet their needs.
• 23:56
  Oliver: Um so yeah, I have I have strong feelings about exercise science and the way it's handled right now.
• 24:02
  Oliver: Um, I do recently I've been trying to work on um my hips, my knees, and my ankles.
• 24:10
  Oliver: So I've been doing a lot of squats, glute bridges, um, and uh calf raises uh so that I can um to help try and target some chronic pain in those areas and make sure I really am in good enough health to walk around town when I want to.
• 24:33
  Oliver: Um and uh yeah, it's it's been helping, but I think progress is slow um too.
• 24:41
  Oliver: And it's uh definitely a balance to figure out how much time is realistic for me to spend on exercise and what areas of my body I can focus on at any one time, and um yeah, how my condition impacts uh uh what my um gains look like too is definitely an aspect of that.
• 25:04
  Oliver: I'm not exactly uh I I haven't been able to work with a practitioner to like test um my like physical development compared to baseline of like other patients my age.
• 25:18
  Oliver: Um but I definitely have had feedback in like sports that I've participated in and things that I'm slower to pick up certain motor skills and slower to build strength um than my peers.
• 25:34
  Oliver: And so that's something that impacts my exercise too.
• 25:39
  Taylor: Very interesting.
• 25:40
  Taylor: And and I like how you point out the healthcare side.
• 25:44
  Taylor: Um, because I know that's something a lot of people have to deal with.
• 25:48
  Taylor: And I myself, once a year, I have to uh go and get all these forms filled up, proving that I am blind every single year.
• 25:57
  Taylor: Because I mean it might change, but not really.
• 26:01
  Taylor: I mean, it hasn't changed for me in over five years, but I still have to go back every time if I want to try a new program where they're like, hey, we need to make sure you're actually blind.
• 26:13
  Taylor: So I'm like, I gotta go get my eye test done again for like the 20th time by now.
• 26:21
  Oliver: Yeah.
• 26:22
  Taylor: And so it can be it can be extremely frustrating.
• 26:25
  Taylor: So I imagine that's very frustrating for you with the PT.
• 26:29
  Taylor: I'm sure it would be immensely helpful having that, even if it's just like a once or twice a year kind of check check-in, having that where you can evolve your your exercise and figure out new ways.
• 26:44
  Taylor: And also exercise science is always developing.
• 26:48
  Taylor: So having new strategies to try out to help prevent or rehab anything that's happened.
• 26:55
  Taylor: So I think it's great that you pointed that that out because we're we're in the United States and a lot of people may not think right away when they think about disability, the healthcare side necessarily.
• 27:07
  Taylor: They might think like different things and might associate more of that with like second and third world countries that have very little health care available.
• 27:18
  Taylor: But you can have health care available, but you still need to be given access to that healthcare, which can be a hurdle in its own.
• 27:29
  Oliver: Yeah, I'm glad that I've been able to get some insight into what is happening with my body, but it definitely, I mean, I've lived on the East Coast for most of my life, and um this is said to be a part of the country with the highest concentration of specialists in these sorts of conditions.
• 27:51
  Oliver: There's a lot of research that goes on at Johns Hopkins Hospital to advance treatments for patients with dysautonomia.
• 27:59
  Oliver: Um, but just because there are people working on that, those things doesn't mean I'm able I've been able to have access um to those resources.
• 28:07
  Oliver: Um and I I think that um anytime I'm able to like make more progress and find uh new ways of advocating for myself, it comes less from suggestions by doctors and more conversations with other patients like me.
• 28:26
  Oliver: Um, because we can, if we live in the same area, we can exchange information about doctors we've seen.
• 28:33
  Oliver: And even if we're talking online, we can share new medical studies that have come out or other things that might like be able to offer more insights so we can all uh better understand together um how we can manage our health.
• 28:47
  Oliver: Um, I definitely would love the medical system to be able to host and hold more of those resources so we don't have to do it all ourselves.
• 28:57
  Taylor: Yeah, I fully agree.
• 28:59
  Taylor: And but also I think it's great that you can have that other side where you can rely on the community to get that different perspective than just a medical professional.
• 29:11
  Taylor: Uh so when you're communicating with people in the dysautonomia community, um, I'm assuming most of that's virtual.
• 29:21
  Oliver: Actually, I think mostly in person, surprisingly.
• 29:25
  Oliver: Oh wow.
• 29:26
  Oliver: Yeah.
• 29:27
  Oliver: Um it's uh I um unfortunately haven't found you know any formal groups around here um that organize around that stuff, but uh I um it's I feel like I just keep running into people.
• 29:45
  Oliver: I think part of that is um that I am queer and uh there is just there's a huge overlap between people who are queer and people who are disabled.
• 29:56
  Oliver: Um, and dysautonomic disabilities are really common uh as compared to other kinds of disabilities, especially amongst people who are under 30.
• 30:09
  Oliver: Um, like that is just the most um common way someone might become disabled in your 20s is by acquiring a dysautonomic condition, uh, because those conditions can be triggered by illness in a big way.
• 30:25
  Oliver: Um and including COVID, which a lot of people um have gotten in the last six years and have become have gained dysautonomia from that.
• 30:36
  Oliver: Um I got dysautonomia from Epstein Barr, which is a virus a lot of people get in their teens.
• 30:42
  Oliver: Um and uh so yeah, like I think just being around other people my age, other people who identify the way I do, I tend to, if I run into someone else who is disabled, they usually have a disability that falls under the dysautonomia umbrella.
• 30:59
  Oliver: Um, and I try and um have be open about my disabilities and open about if there are accommodations I need or limitations I have when I'm in a space.
• 31:09
  Oliver: I'm usually the first to share that, and that creates opportunities where someone else who um might not be as open about it might go share it, like, oh, I have the same condition, or I know someone who does, and it's like impacted my experiences in these ways.
• 31:26
  Oliver: Um, I have a roommate who is hypermobile, and we didn't know either of us was also hypermobile until we moved in together.
• 31:34
  Oliver: We're like, oh, wait, hey, you want to do like PT together in the mornings?
• 31:39
  Oliver: Um it's like um hypermobility.
• 31:44
  Oliver: Um I feel very confident saying like I know at least 10 people who live in my city who are hypermobile.
• 31:51
  Oliver: Um and it's been great to be able to exchange resources about PT and like other doctors we see, um, but also just talk about our symptoms and our day-to-day and like what it's like being in a city that has an accessible public transit system.
• 32:07
  Oliver: Um and uh yeah, like um the intersection of living uh where I do and having the health I do.
• 32:20
  Oliver: Um there are other people who are having that experience and we're able to talk to each other, and that's great.
• 32:26
  Oliver: Um I know uh for people who are looking for more community but may might not live um in uh communities that are similar.
• 32:37
  Oliver: Um I know there are Facebook is a really common place where like patient groups are hosted, so you can definitely look up patient groups for dysautonomia in your area or uh for your specific condition.
• 32:51
  Oliver: Um, and in your country, it can be uh some common like search terms to go and start to find those connections through the internet.
• 32:58
  Oliver: I think that's a great way to connect to people too.
• 33:01
  Taylor: That's awesome, and and I always love to chat about that because there's I feel like the negative side of social media gets talked about far more than the positive side.
• 33:14
  Taylor: And like for me, I live in a very rural area, and so like I'm like 40 minutes away from like the like next like largest city, so there aren't really things around me, and especially being blind and not being able to drive, like it's like I can't imagine having my blindness even 30 years ago because it'd just be feel so much more isolated, but having the ability to be in these groups on Facebook or on Slack or Discord or whatever it is, or even following disabled creators on like YouTube and TikTok, being able to see and watch people who you can relate to, as for me, and I've heard it from others as well, has been uh really life-changing to still feel connected, even though you may not be able to have these things around you or get to places where you can feel connected.
• 34:21
  Oliver: Yeah, I definitely I think online communities are really great.
• 34:25
  Oliver: Um I have only really been able to connect with people in person in the last um, I guess it's been nine months now since I moved um to the city.
• 34:36
  Oliver: Um, and before that, I think it was um I would maybe have one conversation a year with someone else who was hypermobile.
• 34:47
  Oliver: Um and usually it was someone who like had a visible physical difference because of their hypermobility.
• 34:54
  Oliver: A lot of conditions are completely invisible, and even if someone might be open to connecting with someone like them, um, there's it's so difficult to start those conversations um because it's being in public and around other people with a disability, there is still an amount of like it's hard to start those conversations, and you you can never make assumptions about people too.
• 35:20
  Oliver: It's impossible to know just when you're meeting someone what their health is like.
• 35:25
  Oliver: Um so it's like it's hard to find these connections physically, um even in high population areas.
• 35:33
  Oliver: Um uh and uh yeah, online communities were definitely a big source of community for me for a long time.
• 35:42
  Oliver: And I think uh the pandemic was kind of a crisis point that pushed people to build more online spaces in a way where we have definitely had the technology for um a couple decades now where it's it's been possible.
• 35:58
  Oliver: Um, but I think it's just been in the last six years, really, where I personally have seen dedicated community spaces for disability that actually stick around and don't just go offline after a couple years.
• 36:12
  Oliver: Um like I feel like there are more resources that are more stable, have more people working on them, and um are able to be like a community uh hub for that.
• 36:24
  Oliver: And for just dysautonomia in particular, um the the fact that um there uh I I know for POTS specifically, the number of patients in pot with POTS in the US has doubled since 2020 um because of COVID-19.
• 36:44
  Oliver: And so that like the number of people who are in those groups and are seeking and needing support is bigger too.
• 36:50
  Oliver: Um and so I I hope that that that we're able to meet and that need um through the internet to some degree.
• 37:01
  Oliver: There is a group called Disautonomia International that uh works to advocate for people with dysautonomia and um holds an annual uh conference, which is all virtual, um, to educate on like specific medical treatments that are being researched right now.
• 37:19
  Oliver: Um and so I I'm glad that Disautonomia International exists and that um that group and other groups like it are helping more people learn what dysautonomia is and find out if their health might actually fall under that umbrella and be a place where you know you can find other people like you.
• 37:41
  Oliver: Um because not being uh underdiagnosed is really common in dysautonomia, and um education is really important in helping people find support.
• 37:53
  Taylor: Yeah, yeah, absolutely.
• 37:55
  Taylor: Um, because like as I was saying earlier, I've been in this space for quite a while now, and uh I usually research uh the disabilities recover just so I have additional context.
• 38:09
  Taylor: Um, but when I was looking into dysautonomia, I learned that orthostatic hypertension falls under that.
• 38:16
  Taylor: And I actually spoke about it with Amanda because ever since I attained my blindness through a brain injury, I have had orthostatic hypertension, and I didn't know that falls under also under dysautonomia.
• 38:32
  Taylor: And so it was interesting hearing her perspective on experiencing OH as well.
• 38:39
  Taylor: And that's just been a really fun part for me doing these interviews is finding no matter what the disability subject is.
• 38:47
  Taylor: Um, I don't think I've done this single interview where I didn't find at least one, usually a lot more similarities and experiences.
• 38:57
  Taylor: And so it's yeah, uh, so yeah, awareness I think is very important for deciding on me because before uh we put on the schedule, I had never even heard of it.
• 39:08
  Taylor: And I'm I'm trying to learn more all the time, but uh new disabilities and new uh like laws and like new assistive technologies, like I'm always trying to learn more, and I just never heard of it.
• 39:22
  Oliver: Yeah.
• 39:22
  Taylor: And I was like, well, if I hadn't even heard of it, I'm sure the vast majority of the population hasn't either.
• 39:31
  Oliver: Yeah, I think that um when you're thinking about dysautonomia, whether you you might have symptoms like that or you just want to learn more about it, um, I think it's good to think of dysautonomia like you would think of being blind or low vision, um, or being deaf or hard of hearing, where um it's a descriptor that helps bring together a lot of people with similar support needs and similar pathologies of their medical conditions.
• 40:01
  Oliver: Um, but it's not one condition, it's uh it's a group of uh many different conditions that have a lot of different specific day-to-day experiences.
• 40:13
  Oliver: Um, using the umbrella of dysautonomia helps patients with similar experiences find each other and helps people who are supporting them be able to understand and know more about what they may might need in a way that um can be easier to discuss and find support around than just a specific diagnostic category, especially because for so many of us, misdiagnosis or delayed diagnosis is a really common experience for us.
• 40:44
  Oliver: Um that means that uh we might not even be able to share like a specific um piece of paperwork that explains exactly why we're disabled, but we might still know.
• 40:57
  Oliver: Um, you know, like for me, I know that it's hard for me to stand for long periods of time.
• 41:03
  Oliver: Um, and so even though I can't point to exact specific medical studies that explain what's happening in my body that may cause that to be the case, I know hypermobility is a part of that.
• 41:15
  Oliver: This cardiovascular stuff is part of that.
• 41:18
  Oliver: Um, but regardless, it's good for me to have places to sit and to advocate and say, hey, I'm I'm disabled, I have dysautonomia, and because of that, I I need access um to seating.
• 41:30
  Oliver: Um, I might need to, if there's no seating, I might need to request a wheelchair from a venue, you know, things like that where um being able to just share that I have dysautonomia um without getting into the specifics, it feels like uh it makes it a lot easier to seek support um than um stuck in this place of like, well, I'm like trying to figure it out with my doctors, but right now I just need to sit down.
• 42:01
  Oliver: Um so yeah, like it's it's it's an umbrella term and it's a really helpful umbrella term for sure, is what I would say.
• 42:11
  Taylor: That's really cool.
• 42:12
  Taylor: I've never heard um that argument given for using certain like different types of terminology.
• 42:20
  Taylor: So that's really interesting.
• 42:22
  Taylor: I I've never really fully thought about that because you have like blind and low vision, but then like I have cortical blindness, and there's like diabetic retinopathy, retinitis pigmentosa, starguards, like there's so many different things, but having that umbrella term, I never thought of it in that way.
• 42:42
  Taylor: So thank you for sharing that.
• 42:45
  Taylor: That's a interesting way for me to think about it, as well as anyone who listens to this.
• 42:51
  Oliver: Yeah.
• 42:53
  Taylor: Um, so you had uh I want to move a little bit away from disautonomia, not fully, but I want to make sure we uh take time to talk more about you as a full person and not just through the lens of disautonomia.
• 43:07
  Taylor: Um so you had shared about the cooking and the piano.
• 43:11
  Taylor: Uh, do you have any other interests you like to do in your fruitang?
• 43:17
  Oliver: Um I also like gardening.
• 43:20
  Oliver: Um I volunteered a community garden near where I live, and um I have found that really enjoyable to be able to um have some both some physical activity and also it's a social activity because I can go talk to other people who are passionate about our ecology and um we really uh when I go to that community garden, we're always gardening as a group.
• 43:53
  Oliver: Um and so I think I found that really rewarding um to be in community in that way.
• 44:00
  Taylor: Nice.
• 44:01
  Taylor: Yeah, I I used to garden a decent amount.
• 44:04
  Taylor: Uh I my first job was on a farm, and part of what I did was run the charity garden.
• 44:11
  Taylor: So and we would bring in kids like once or twice a year who lived in impoverished areas and taught them how to grow their own food.
• 44:19
  Taylor: And since then, like I I just love the and I also have some I don't know, I don't want to misappropriate the term, but I feel like I have some minor OCD tendencies with certain things.
• 44:32
  Taylor: And so when it came to the gardening, like it I just made sure like there were absolutely no weeds, and like it was like perfectly in rectangular plots and like all this different stuff, and I really enjoyed it.
• 44:44
  Taylor: And at some point I might want to get back into it.
• 44:47
  Taylor: And that's yeah, I I didn't necessarily get that social aspect, but that's really interesting that you have like a community garden.
• 44:56
  Taylor: I might look into you know if there are any around here.
• 45:00
  Oliver: Yeah, I think that um gardeners are very friendly people in my experience.
• 45:06
  Oliver: Um, everyone is totally when we're gardening, it's totally down to just spend an hour um chatting while we're waiting for someone to come back with the wheelbarrow for whatever.
• 45:19
  Oliver: Um, you know, like it's very laid back, and we know that the plants are gonna grow regardless of what we do.
• 45:28
  Oliver: As long as they have a little water on them and it rains occasionally, it's everything else, it's pretty much okay.
• 45:34
  Oliver: So it's very laid back, very relaxing for sure.
• 45:39
  Taylor: Nice.
• 45:39
  Taylor: Yeah, that was basically my experience, except with watermelon.
• 45:44
  Taylor: I could not get them to grow more than like the size of my fist.
• 45:48
  Taylor: Not sure what it was.
• 45:50
  Oliver: I'm growing squash in my backyard right now, and one of them, it was growing for maybe about two weeks, and then it just stopped, like changed color.
• 46:01
  Oliver: I think it's like done now.
• 46:02
  Oliver: I don't know why.
• 46:03
  Oliver: Um it didn't get bigger, it was just decided to be done there.
• 46:08
  Oliver: Um, they're mystifying plants.
• 46:12
  Taylor: Yeah, I mean they're fun.
• 46:13
  Taylor: I never had trouble growing bell peppers, those were super easy, but unfortunately, I don't like bell peppers, so I was like, yeah, they're nice to look at, I guess.
• 46:24
  Taylor: But yeah, I'm also a very picky eater, which doesn't help.
• 46:29
  Taylor: So you had talked earlier about uh your issue with your rib when you're driving.
• 46:38
  Taylor: Um, so is that something that's always in the back of your mind, whether you're driving or just walking down the street, like always thinking, like watching where you're walking, make sure you don't trip over anything.
• 46:52
  Taylor: Like, how does that play into your day-to-day life?
• 46:56
  Oliver: I think I definitely feel more cautious right after something has happened.
• 47:02
  Oliver: Um, and that applies um to my hypermobility, but also for sure to my allergies.
• 47:10
  Oliver: I sometimes can feel really stressed if I have a reaction like, I don't know how sensitive I am to this, or like if there's something in my diet I haven't realized I'm sensitive to yet.
• 47:24
  Oliver: It's it can be really stressful to be dealing with not only the acute symptoms like the adrenaline in my immune system, um, but also just like trying to figure out dietarily.
• 47:38
  Oliver: Like, am I gonna have to go through all change again?
• 47:41
  Oliver: Um because that's like a real possibility I might have I might have.
• 47:46
  Oliver: Um with hypermovability, um I have noticed um some uh I think there are some things where I've had to make lifestyle changes to try and help with the symptoms, but not not as extensively, I'd say, as my diet.
• 48:07
  Oliver: Um I if I've had a um uh discrete injury or like pain severe enough, I've had to go to physical therapy.
• 48:19
  Oliver: I um tend to exercise less and like am worse at keeping up with other parts of my routine because I'm worried about like making it worse.
• 48:28
  Oliver: Um safe exercise um is an important part of part of recovery and like be staying mobile um while you're recovering from an injury as much as possible is really, really good.
• 48:42
  Oliver: I've had the science behind it explained to me, but it's still really challenging to feel the acute pain and feel like my hips are so sore because I was, you know, just doing my exercises as normal.
• 48:56
  Oliver: Um and uh yeah, I mean, I've had some times where I've overexerted myself from exercise and like had some uh uh my heels I I've injured on a number of occasions because uh just of how hypermobile my ankles are, it's it's hard to stick to a safe range of emotion for me.
• 49:16
  Oliver: Um so it's uh it it feels like I try and be really conservative and really safe.
• 49:24
  Oliver: I try and stay within my limits.
• 49:27
  Oliver: Um but also the science does say that like I should be exercising and like progressively loading on more weight to my exercise.
• 49:35
  Oliver: Um and so there's that kind of like conflict for me and how I navigate exercise.
• 49:41
  Oliver: Um, but I do try and like make sure if I have concerns to talk about it with my healthcare team, um, and not just assume that uh what's within my comfort zone is always the best for my body.
• 49:55
  Oliver: Um some parts of my healthcare can feel a little uncomfortable sometimes, and that's that's a part of making sure I show up for my body and um prepare to um live in it for many years to come.
• 50:09
  Taylor: Awesome.
• 50:10
  Taylor: And I think all of that was one very informative for me and anyone else listening, but I think that's really good for anyone who listens to this who might also have some form of disautonomia and hearing how you manage these things and what your perspective is, just like how we were talking earlier, hearing from others with dysautonomia can be invaluable, really.
• 50:36
  Taylor: So I really appreciate you doing this on more of a mass scale.
• 50:41
  Taylor: We don't have like millions of listeners, but in my experience with advocacy and this type of stuff, even if one person hears this, then then this is all worth it.
• 50:52
  Taylor: And so I really appreciate you sharing all this and helping me learn more.
• 50:57
  Taylor: Um, I really appreciate that because that again, this is something I hadn't heard of before this, and I've learned so much already with Amanda who we spoke with first, and now with you, Oliver.
• 51:09
  Taylor: So I just really appreciate everything you shared.
• 51:13
  Taylor: And and I know it's not always the easiest talking about some of this stuff, but I think you did it with grace and and I appreciate it.
• 51:22
  Oliver: Yeah, and thank you for inviting me to come on.
• 51:26
  Oliver: I definitely um I enjoy being a part of patient groups and other spaces like that where I can have like very small-scale conversations about this stuff, but it's it's nice to be able to share to the broader wilds of the internet um uh some of the thoughts I have on my own experiences and reflect on that.
• 51:48
  Oliver: Um and um yeah, I um I don't know if um our podcast has anywhere where people can share comments um the way that you post them usually.
• 52:02
  Oliver: But um I would love um to hear comments if if we have that enabled on YouTube, um for sure.
• 52:10
  Oliver: Um I love connecting with other people and talking about this and answering people's questions about it.
• 52:18
  Taylor: Yeah, awesome.
• 52:19
  Taylor: And whenever this does go up on YouTube, we'll make sure that the comments are turned on so we can interact with anyone who has any questions, but we'll also make sure to include Oliver's contact info or anything he would like to share.
• 52:35
  Taylor: Uh like or any resources you would like to share on Disautonomia, anything like that.
• 52:40
  Taylor: So uh feel free to take a look at those in the show notes wherever you're listening to this.
• 52:46
  Taylor: And uh thank you all so much for listening, and thank you so much, Oliver, for joining us.
• 52:51
  Oliver: Yeah, thank you.
• 52:53
  Taylor: Hey there, and thank you for joining us for this episode of Day in the Life on the Accessible Community Podcast.
• 53:01
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• 53:09
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• 53:14
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• 53:20
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• 53:29
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• 53:36
  Taylor: Thanks again for joining us, and we'll see you in the next episode.