Moving Past Surviving to Thriving

[Upbeat Guitar Music]

Mike: Welcome everybody. This is Avoiding the Addiction Infliction, brought to you by Westwords Consulting and the Kenosha County Substance Use Disorder Coalition. I'm Mike McGowan.

Mike: You know, it's not trite to say that some people see challenges as obstacles and others see them as opportunities. Katy Arvidson was 10 years old when she was diagnosed with Pompe disease.

Mike: In spite of that diagnosis, she kept going. And eventually obtained her master's degree in social work. She's now a retired, licensed clinical social worker and advocate for persons who experience disabilities and mental health challenges. She recently joined the advisory council for the Alaska Disability Law Center.

Mike: Where she focuses on the overlap of disabilities and mental health, and since this is the beginning of Mental Health Month, I thought it would be a great opportunity to have Katy on. She is also currently Ms. Wheelchair Alaska, embracing a platform of not just surviving, but thriving and will be competing, I believe, this summer in Ohio for the national competition.

Mike: We're gonna talk about our story and work today. Welcome Katy.

Katy: Thank you.

Mike: Okay. I had to look it up, so I'm sure I'm not the only one. Start us off by telling us what Pompe disease is. I got that right. I pronounce it right, right.

Katy: You did. Yeah. Pompe's disease. This is a very interesting fact. I didn't know this till a few days ago.

Katy: He was in the Netherlands, Dr. Pompe, who discovered the disease, and he died during World War II protecting Jewish people. Which is pretty incredible story. Anyway, so Pompe's disease, the way I describe it best, it's a rare muscular dystrophy. In the United States there's only about 5,000 of us total.

Katy: And essentially what happens is I'm missing an enzyme. My body does not produce an enzyme that it should, and so I'm not able to break down complex sugars. And all of that material builds up in my muscle tissue and wastes the muscle tissue. It's progressive. But everybody has a very different timeline depending on how much enzyme your body produces.

Katy: So in the infantile form it used to be that they didn't produce any enzyme and they would've died within a couple years. It would've impacted their heart. Thankfully, I don't have any impact in my heart. And so I have more of what's called the juvenile form.

Katy: So I produce more than the babies. But then there's also like adults who are like, well past midlife in their fifties and sixties who are just being diagnosed. Like they didn't start having symptoms until their fifties. So it's a very wide sort of range around how devastating Pompe's disease can just be to your body, if that makes sense.

Mike: Yeah. I was reading an article about you and it, and it said that when you were in school that you knew, oh, here we go. 'Cause you were having difficulty managing stairs. So did you like, know that eventually you'd end up in a chair and if so, what does that do to your psyche?

Katy: Man, that's a really good question.

Katy: I didn't know. There was so little information when I was diagnosed, like no information. I got the diagnosis and the doctor said, well, good luck. You probably won't live to see adulthood, but...

Mike: Wow, wow.

Katy: There was no treatment, there was no information, just there was nothing at that time. And so I you know, grew up like every kid does kind of normally through high school and then around 20 years old when I was in college I'm all over campus. I'm carrying my backpack around and parking in the parking lot. Have to go up this huge set of giant stairs to get to my classes. I just started not being able to get up those stairs, like exhausted.

Katy: Like when you get to the top of the stairs, I can't pick up my legs anymore.

Mike: Wow.

Katy: And that's when it kind of clicked, like, oh, this is real. Like, I've known it for most of my life, but I just didn't. It just wasn't a part of my life until then. And still even then, you know, you don't know how it's, I didn't know how it was gonna end up.

Katy: I didn't know how I would progress. I didn't know if it would go slowly or quickly. I didn't know I would end up in a wheelchair or needing the other AIDS that I use. So it just sort of happens, it just evolves over time. And it's sort of like continual losses that you just get used to, like grief after grief, after grief of loss. I think that's kind of the best way I can describe it.

Mike: Yeah, that's a great way to describe it actually. Well you said you didn't know much about it, but apparently neither did the doctors.

Mike: You got some advice that was bad, right?

Katy: I did. Yeah. I think they were thinking like. I've got childhood diabetes or something. They told me to suck on some hard candy, which is complex sugar when I'm feeling tired. And it was just, it was so unknown back then. And I do think one of the big impacts it had on my life.

Katy: Is i've always been more in touch with my own mortality.

Mike: Mm-hmm.

Katy: I've always had this thing looming over my head, like, I've got this disease. I don't know what it's gonna be like, but I know I have it. And my sense of mission and purpose in my life has been driven by that.

Mike: Does that have something to do with what you majored in in college?

Katy: It doesn't really. I went to college, liberal arts school. I really liked psychology. I took a introductory class. I really liked it. And so I said, okay, I wanna major in psychology. Not really knowing where that would lead. But I enjoyed it. I enjoyed learning about it.

Katy: And then I started working at a home for children who were in the foster care system and didn't have foster care placement. And I loved those kids so much. That was why I decided to go into social work.

Mike: Hmm.

Katy: To see what those kids were going through was heartbreaking. But I love developing relationships with them and helping them think through the hard parts of their life and being able to comfort them in some ways and cheer them on and give them a safe place.

Mike: How did you do all this? Because as you're going to school, as you're working, I also read that you were doing these, how often were you going to New York from Alaska for treatment, right?

Katy: Yeah. Not until af it was about my mid twenties. So I had graduated college, graduated middle, or graduate school.

Katy: And my body was slowly deteriorating, but not, not to the point where I couldn't function, right. I started using a cane at some point. And then in my mid twenties, after my husband Josh and I got married they started the first clinical trial for a drug. It's essentially an enzyme replacement treatment.

Katy: And it pumps the enzyme into my body and it slows the progression of the disease down. That clinical trial started after we had moved back to Alaska, and so I was flying every two weeks from Alaska to New York City to get this treatment. It was terrible.

Mike: (chuckle) I can't, I think people make that trip once a year would say that.

Katy: I can't begin to describe how overwhelming... It was like I just put my head down and I kept moving.

Mike: Yeah, right. That's where I was going.

Katy: Yeah. I was working still, I bring my laptop along and work on the plane and get my treatment and come back home. It was a sort of a three day deal.

Katy: I'd fly to New York City, which would be all day. I'd get there at like two or three in the morning. Right. They pumped the enzyme into me and I'd come home the next day and go back to work. How do I describe it? It was like I was on a continual two week loop.

Katy: It was consistent. It was a routine. I had a routine, but it was so overwhelming. It was like I'd travel, I'd come home, I'd wash my clothes, I'd go to work, I'd packed my bag, I'd travel, I'd come home, I'd wash my clothes. Like it, it, there wasn't... For me, the future disappeared. It was just, I have to put my head down and get through this.

Mike: How'd you cope?

Katy: Not well, honestly. It was really hard on our marriage.

Mike: Yeah, I bet.

Katy: You know, we, we hadn't been married very long, maybe two or three years before I started this clinical trial. It was really hard on me personally, just emotionally, there were actually a couple things that helped me get through it.

Katy: I was able to bring a companion with me on these trips. And so I started inviting young women that I worked with, or I knew through church. And like they grew up in Alaska, right? They've never been to New York City. And their joy and their excitement about getting to go to New York City with me, build my cup, you know, like they, they would get, and they're lining up like, when can we go when can we go? And so that part of it was. Part of it helps so much. And we'd save our per diems and buy the cheap tickets to a Broadway play after I got my infusion and go out for dinner. And that part of it was great. I mean, New York has such a buzz, right? The energy is so exciting there.

Katy: And so that part was, that part filled my cup.

Mike: Is it same buzz as where you're in Fairbanks, is that right?

Katy: Oh my gosh, no. (laugh) I, no, no. It's so slow up here. Like this really rhythm is not like a city at all. It's just chill. Yeah.

Mike: Well, did I, I have to ask you, did the infusions work?

Katy: I think it did. It's not a cure, it's a treatment.

Katy: But it slowed the progression down, I believe. I'm not sure I would be alive if I hadn't had the treatment.

Mike: Do you still do 'em?

Katy: Yes. Yep. 20 years later, every two weeks. But I do it in Alaska now.

Mike: Oh, all right. You just saw my reaction. I'm like...

Katy: No, no, no, no.

Mike: Still flying 20 years later every two weeks to do it.

Katy: Oh my gosh. No, no. I did that about five years. And then and then they were able to bring the treatment up to Alaska for me.

Mike: Well, thank goodness. That's great.

Katy: Oh, yes.

Mike: You were telling me off the air that you also coped in a not the healthiest way too. You started using some substances to be able to get through.

Katy: I did. I started drinking alcohol. I was flying so often.

Mike: That can't be good. Right?

Katy: I was bumped up into first class, almost every flight, and they served free alcohol. And so I'd be on the plane and I'd have a glass of wine, and then two glasses of wine, and then three glasses of wine.

Katy: And then I started drinking at home and it's, hmm. It is complicated. It helped me get through, but it also dulled me in a sense.

Mike: All the way around? Not just...

Katy: All the way around.

Mike: Right.

Katy: Yeah.

Mike: So that had to take a toll on your work, your optimism, your marriage again.

Katy: Yeah, absolutely. Yeah. All of it. And then I also in combination with alcohol, and this part was truly terrible.

Katy: I had a doctor prescribe a benzodiazepine.

Mike: Yeah. I was waiting for that.

Katy: And I got addicted to that too. And, like I'm a social worker, I should know better, right? But I was in so much pain.

Mike: Yeah.

Katy: I'm still fighting to walk, like falling and getting concussions and it hurt so bad.

Katy: And I'm like, I am going to walk as long as I possibly can. And that benzodiazepine in combination with the alcohol. Was I, I was a zombie. It, it was, it was horrible. I was blacking out every night. I'd wake up in the morning and I'd be like, oh no. Did I yell at Josh again? Did I scream at him again? And I was blacking out every like night, like I could not remember what happened the night before.

Mike: How did you turn that around?

Katy: Oh man, this is great. Part of my story. COVID hit. (laugh) Yeah.

Mike: (laugh) God bless COVID.

Katy: It was COVID. Thank you COVID! Yeah, no, what happened is, mental health became available through distance delivery. I couldn't get mental health treatment because I was in a wheelchair and I couldn't drive anymore and nobody in my community, in Eagle River, it's close to Anchorage, about a 30 minute drive to Anchorage, but nobody in my community would take Medicare.

Katy: Like there were literally no therapists here and I couldn't get to see a therapist and COVID hit and we started being able to get mental health treatment through Zoom and that I turned it around.

Mike: Good for you.

Katy: Yeah.

Mike: I saw a couple of social media posts that you did. That some people have lumped everybody, some people in the government, into a fairly disgusting category.

Katy: Yeah, I'm a social worker. It hurt and it ticked me off to be honest. People say the stupidest things.

Mike: Yeah.

Katy: The cruelest things, I think on the internet. But yeah, somebody said, basically he was laughing about federal programming being slashed for people who depend on our social safety net, Medicare, Medicaid, social security, you know, TANF, like everything.

Katy: And so it essentially was saying. People who need that help are parasites. That was the word that was used. Parasites. And yeah, not cool. Not cool. So I, you know, part of what I'm doing is Miss Wheelchair Alaska USA is, I am trying to put out information about disability, how it impacts our mental health.

Katy: But also provide like a message of hope, right? Like, yep, we may be in wheelchairs, but we can still contribute to our society. We still have things to say. We still have things we wanna do with our lives. And, if you haven't had the experience of trying to live in a wheelchair, most people just aren't aware of the tiny little things that we deal with on kind of a day-to-day basis that just aren't a concern for other people.

Katy: They just never think about these things, right? And so part of my message is to be real and to be honest about what it's like and educate people and provide some hope.

Mike: Well, I was thinking about that actually. I was gonna ask you about that because things that we take for granted, a lot of us.

Mike: Like getting up in the morning, going to the bathroom and brushing your teeth, right.

Katy: Yeah.

Mike: Are things that you have to put thought and planning into, and that Katy has to take a toll on your mental health. So you have to be vigilant with not only the physical, but the emotional and the mental part of it as well, to not get down, to keep being hopeful.

Katy: Yep.

Katy: It's absolutely true. As my disease progressed, there was a period of time when I was drinking and using substances. I got to the point where I couldn't get out of bed on my own anymore. I needed somebody to help lift me up in the bed, swing my legs over, and help me into my wheelchair, and I didn't have any...

Katy: I didn't have any in-home caregiving, so we found a neighbor who could stop by about three o'clock in the afternoon and get me out of bed. So I was in bed every day until three o'clock in the afternoon.

Mike: Wow. Wow.

Katy: And talk about depression, I mean...

Mike: Yeah.

Katy: Just devastating. I have in-home caregiving now, which has also changed my life.

Katy: The in-home caregiving and having therapy available. But it is hard. I can't just get up and go to the bathroom. It's about a 10 minute process to get me to the bathroom. We've made a lot of modifications to our home. We're very blessed.

Katy: Josh has a good income and that definitely helps. It makes it easier. But that's not the case for a lot of people with disabilities and a lot of people in wheelchairs. We are lucky in the sense. Other people live in pure poverty.

Mike: Mm-hmm.

Katy: And that's hard to watch.

Katy: My friends struggling with those things.

Mike: Are you also, well, Joshua was telling me, I, for those of you who are interested, we interviewed Joshua a while back. You can listen to his podcast, a little different topic, but he was saying how some people are confused as far as what kind of insurance they have, like in Alaska, right?

Mike: Alaska is called Denali Care, I think in Wisconsin BadgerCare, but that's essentially Medicaid.

Katy: It is, yes.

Mike: People don't know that. So are you and others concerned, worried about funding decreases or additional hoops you would have to jump through to be able to get just the basic care?

Katy: Absolutely. Yeah. Yes. I can say in the disability community right now, the fear is palpable.

Katy: It is real and genuine. People are genuinely scared that they're not going to be able to receive their healthcare anymore. And in the House recently, they just passed a budget. It's not the budget resolution yet, but it's like the plan for how they want to reduce spending or increase spending for all of the various committees and departments. Right. And Medicaid is under the something commerce, anyway, I can't remember that part of it. But part of the budget is that they want to slash $880 billion out of that particular pocket of money, and that's Medicaid.

Mike: Mm-hmm.

Katy: That's Medicaid. And you know, there's still a lot that has to happen for that. And so I hope that it doesn't end up happening. But the Republicans control the house, the Senate, and the executive branch, and if they wanted to push that funding decrease through, they could.

Mike: People are important though. And we've seen some of that lately where people are like, whoa, whoa, whoa, whoa. Out loud. Which is interesting.

Katy: Yes.

Mike: But you also have gotten a lot of support. I know Joshua's really supportive, but is Carol your mom, right?

Katy: Yes.

Mike: Okay. Sorry to bring her up. I wanna meet her.

Mike: She seems like a pip.

Katy: Oh, she is such a character.

Mike: Some of her comments on social media are, boy, she's a little tiger.

Katy: Yes, she is. Yes she is. It's really funny. She went on and got her master's degree in social work too much later in life. But yeah, she's fierce and fiery.

Mike: Like she was quick to like, boom, she took over the argument for you.

Katy: Oh yeah, she did. Yep.

Katy: And I'm like, mom, slow down.

Mike: (laughs) Yeah, well, haven't we all said that at some point to our parents?

Katy: I'm like, mom, slow. Like slow down. (laughs) Like, part of what I'm trying to do in my messaging with the Miss Wheelchair thing is do it in a way that everybody can hear the message.

Mike: Yes.

Katy: And so I don't wanna jump into just the political divide and the arguing and that I'm really trying to stay out of that because I want people, everybody to be able to hear my message. And but yeah, my mom just (laughs), she just. Steps it and runs with it.

Mike: Well I think we first heard an Alaskan woman talk about being a mama bear, so I think you're on both sides of the political spectrum there.

Katy: That is a big, that is big time. True.

Mike: Is she coming with you to Ohio?

Katy: She's gonna meet me there, I think. Yeah.

Mike: Really. That's great.

Katy: And my dad and my stepmom, they're really supportive too. They're not on social media. And so I'll send them little posts that I do. And they're very supportive too, and I am hoping they'll be there as well.

Mike: I'm gonna obviously put a link to your stuff in here, but also a link to the Miss Wheelchair USA pageant and something called the Dane Foundation, where people can actually contribute and support those of you who are in competition for it. Tell us a little bit about the Miss, Ms. Right.

Mike: Do I get there? Yes. You wheelchair USA competition.

Katy: Yeah. I, oh my gosh, I am enjoying it so much. So I put in an application, it's an application process essentially, and I was chosen to be Miss Wheelchair Alaska, USA, and they sent me a crown and a sash.

Mike: Which you have to wear when you're out. Right?

Katy: I have to wear when I'm out. Yes. And it's very awkward.

Mike: (laughs)

Katy: Like extremely awkward. All of us with our crowns. I think some of us are handling it better than others. But on a flight we are going to Hawaii and they announced it over the plane and everybody started clapping and I'm just like, oh my gosh, that's so embarrassing.

Mike: (laughs) That's so good. Oh no, you need to get the princess waved down then.

Katy: Oh, man.

Katy: Yes. So Miss Wheelchair, USA is a pageant for women with disabilities who use wheelchairs. There's thousands of pageants all over the place for everything. And only two pageants for women with disabilities who primarily use wheelchairs. And the Dane Foundation is a nonprofit started by the people who also run Miss Wheelchair USA and they work in collaboration, the Dane Foundation and Miss Wheelchair USA. And the Dane Foundation really pushes the message of acceptance and accessibility and understanding. And they provide like day to day needs for people with all kinds of disabilities. Like if they need some socks and they can't afford socks, the Dane Foundation will find a way to get them some socks. And truly, the people who run those organizations do it purely out of love.

Mike: Yeah, I bet.

Katy: Just purely out of care for people who need help.

Mike: So when you get to Ohio, I assume there's interviews and stuff you have to do. Do you also get the opportunity to present your platform, which I believe is on mental health, right?

Katy: Yeah.

Mike: Do a little TED Talk, as it were, maybe?

Katy: Mm-hmm. Yep. Exactly.

Katy: Exactly. There's all kinds of things I'm trying to get ready for.

Mike: I was just gonna ask you where you're at with that process.

Katy: Oh my gosh. It's like, it just hit me, it's three months away and I'm like, oh, I've got so much do to.

Mike: (laughs)

Katy: I haven't even thought about buying a dress yet, right? Like, I'm supposed to get a formal dress and I'm like, oh my gosh, where the heck am I gonna do that? I don't know.

Katy: But yes, they have judges. There's a few different rounds of interviews and then I've got five-ish minutes on stage to talk about my platform, which is mental health. And I wanna talk about. Two different things, but I've really gotta pare it down. I'm not sure how I'm gonna fit it all into five minutes.

Katy: But what I wanna talk about is. How to reduce the risk of mental health trouble when you have a disability or in a chair or any kind of disability, right? There are things we can do to reduce that risk. And I wanna talk about the reality of it. Like people with disabilities are at much higher risk of having to deal with depression and anxiety and it's just a reality. Right.

Katy: And then the other thing that I wanna talk about is not how we can help ourselves, but pushing for systems change.

Mike: Mm-hmm.

Katy: Right? Like increasing access to mental health care. Making sure that people with disabilities have the supports, like the in-home caregiving that they need. Making sure that people with disabilities have adequate transportation so they can get out of their house and go shopping, right?

Katy: Like every kinds of things. And those are larger policy pieces that are threatened right now and, I'm speaking up about that stuff.

Mike: Good for you. Because that hurts Katy. That hurts nobody, you know, come on.

Katy: Yeah.

Mike: And as you said, there are some good things that did come out of COVID and one of them was a sense of collaboration when people collaborate.

Mike: But the other is that access to care. We have a lot of therapists who listen to this and many who have been on, who have been provided people care who wouldn't otherwise get it. Alaska is not exactly an urban center where there's tons of treatment. So there's distant places where if they don't have the internet, they can't get medical care, let alone...

Katy: Mental health care.

Mike: Right.

Katy: Yeah. It's absolutely a reality. I mean, most of Alaska is not connected to a road system.

Mike: Right!

Katy: And so people get to their villages by flying or snow machine. And getting just even primary care out there is hard. And psychiatric care is like unheard of almost.

Katy: I mean, it's so difficult to get anybody mental health treatment in those villages. But truly, I think COVID changed that, at least for mental health care.

Mike: Yeah, that's great. Well, Katy I'll let people know, although they can follow you now too, so...

Katy: Yes.

Mike: Good luck in Ohio. I can't wait to see how it all goes.

Katy: I'm super excited and I've been developing friendships and relationships with the other gals too, which is great. 'cause I don't know any other women in a wheelchair like, it's just me up here. I mean, there are other women. But yeah, it's been great developing relationships with them too.

Mike: And I don't think you should be embarrassed at all. I know if somebody provided me with a crown and a sash, I'd be wearing it 24/7 until my friends and family would say enough Mike (laughs)

Katy: (laughs) Take it off now.

Mike: I'd wear it around the house.

Mike: For those of you listening, you know, there's links to the Dane Foundation and the Ms. Wheelchair competition attached to the podcast. Thanks, Katy.

Katy: Yeah.

Mike: This has been outstanding. And what a incredibly resilient person you are, inspiring.

Katy: Thank you.

Mike: I hope for all of you listening, you're able to listen anytime you're able. Until then, stay safe. And I think Katy would say this too.

Mike: Stay informed.