John McAleavey: I am honored and thrilled to be working with the Kessler Foundation on this episode, as well as one soon to follow. Today we are spotlighting inner strength, a monthly virtual gathering for people living with spinal cord injury and their loved ones. The program recognizes that inner strength can come from many places: social connection, shared experience, personal reflection, and community. Through honest dialogue and peer support, individuals have the opportunity to explore the emotional and social experiences that often accompany spinal cord injury, while finding ideas and encouragement to support well being. Inner strength is facilitated by Marianne Hobby, an SCI survivor, chaplain, and author, alongside Angela Smith, Kessler Foundation's SCI caregiver. Peer mentoring program coordinator and community engagement specialist. Together, they will help guide a thoughtful, supportive conversation grounded in lived experience, compassion, and connection. And with that, it is my pleasure to bring in the aforementioned Marianne Hobby and Angela Smith. Ladies, thank you so much for joining me today.
Angela Smith: Thanks, John.
Maryann Hobbie: You're most welcome. Glad to be here.
John McAleavey: Yes. And why don't we start right at the top and I want to know more about yourselves before we get into the inner strength program that you're doing so well. So Angela, why don't you tell us how did you get involved working in the spinal cord injury and disabled community?
Angela Smith: Well, John, like so many of us who work in this space, there's always a personal story behind it. And so my personal story is I met my husband at my very first job out of graduate school, and he was a patient, he was a C five six quad where I was working, and we were he wanted to do adapted sports, particularly racing, and that was my educational background was in adapted sports and exercise. So we got kind of stuck together for a a good amount of time. And
John McAleavey: Mm.
Angela Smith: you know, I I got to know him as a person pretty much within five minutes after kind of the first session that we were working together in training. I just saw just such a compassionate man who had such a wit about him. And during the the times that we were working together to get him strong enough to do what he said. A race where he could get a free T shirt in the bagel, really. And
John McAleavey: Yeah.
Maryann Hobbie: Okay.
Angela Smith: we had a lot of time to find out what we had in common. And it was more about what we had in common than the difference that he was somebody who had a disability and I did not. We found out we were both huge music fans, fans of Bruce Springsteen, that we were both we are giant fans. But we differed a little bit in baseball. He was the Met fan, I was the Yankee fan, but
Maryann Hobbie: Mm-hmm.
Angela Smith: We we made it work and you know we decided to build a life together. We adopted our son Luke at eight and a half months, he came from Korea and you know pretty much unfortunately we lost Michael ten years ago when Luke was twelve and you know it it was not an easy time dealing with Michael's loss and trying to raise a twelve year old boy coming into his teenage years. as mom, but
John McAleavey: Had your hands full.
Angela Smith: yeah, I I I did, but I had I had a lot
John McAleavey: Yeah.
Angela Smith: of support and you know, we've gotten to the point now that, you know, Luke is in the senior year of college, about ready to probably be make me a complete empty nester because he's never really left. So which which would be kinda nice I think. But yeah.
Maryann Hobbie: .
John McAleavey: Angela, I don't mean to interrupt, but I'm told it's not empty nester anymore. I've heard it's free bird. Parents are now free birds. When your children Yes.
Angela Smith: well yeah, I mean even with him living at home, it it's almost like when people ask me, you know, how's Luke doing? I say who's we really talk to each other much. But during this time
John McAleavey: Yeah, right. Exactly.
Angela Smith: that I just described, you know, I was working, you know, at a small a small rehab where we met and then I s have pretty much given twenty five years between working at Kessel Institute and Kessler Foundation. The majority
John McAleavey: Yeah.
Angela Smith: of that time the last twenty years spent working at the foundation in various roles in research and in my my new role now as a community engagement specialist where I'm helping to serve all the different populations spinal grid injury, traumatic brain injury, multiple sclerosis that we we work with. So that's
John McAleavey: Yes.
Angela Smith: my little professional plug there for all the different things that we do and that I'm involved with. So
John McAleavey: You wear a lot of hats. That's excellent. How about you, Marianne? Tell us about yourself. I know you and I have something in common and that's three those three letters, S C I, right? We both have a spinal cord injury. So tell us about your journey.
Maryann Hobbie: Well, in the summer of 2013, I had just returned from a faculty retreat in Rome with the Seton Hall University. And I had been asked when I was there to teach in this new program they had Catholic studies. And I was so excited because I was already teaching, but I wanted to teach in program. That happened. had just Our teenager went to college for a semester and came home as a mama. So we had a new baby girl in the house and infant. And one morning I woke up and I couldn't swallow. And I have no memory for three and a half, almost six months. I remember being at the birth of my grandbaby, holding her one time, and then that's it. And I woke up and I couldn't swallow. And I woke up again. That was July 27th. I woke up and it was time for the Halloween parade at Seton
Angela Smith: Well.
Maryann Hobbie: at Kessler. And I remember saying to a nurse one day, said, was I sick? She's like,
John McAleavey: my gosh.
Maryann Hobbie: you were a sick puppy. I'm like, I was.
John McAleavey: Yeah.
Maryann Hobbie: I was in Noro ICU for a month. I was dying and it ended up C4 to C7 incomplete on event. I and the Kessler, the Kessler care was changed my life and the whole hospitalization between Kessler between the hospital Kessler on nursing home and in Kessler was eight and a half months. I was able to, I became ambulatory decided to do two things. One is I went to chaplaincy school, a DVR would pay for, I wanted to get my doctorate because I had never finished it, but that didn't work. And
John McAleavey: Mm-hmm.
Maryann Hobbie: Chaplain. While I was in Chaplaincy School at Overlook Hospital, I started to volunteer at Kessler, which was my love. And that's just evolved over time. And Jean Zanka got me involved in the research, some research pieces. And so that's my Kessler story, and that's my SCI story. And I live with multiple invisible disabilities. And we'll walk a little funny than the average person, but that's okay.
John McAleavey: That's your story and you're sticking to it. I like that, Mary Ann. We do walk
Maryann Hobbie: Here you go.
John McAleavey: a little differently, right? We like to refer to ourselves as the unicorns. Yeah. Folks that can walk with spinal cord injuries, which is not too common, you know, when people hear spinal cord injury, they think wheelchair, wheelchair, wheelchair. And so, you know, you and I can walk. It's a little funny and we have you know, I know I have very limited to to no use of my uppers, my arms, hands and fingers, and so, you know, these injuries comes in all they come in all shapes and sizes and You know, you y you live and learn and you meet people every day and it's like, whoa, you have a spinal cord injury? And it's like, wow, yeah. So why don't we hop into some questions now? Angela, first of all, why did being or what did being Michael's wife and caregiver teach you about love and resilience? Because I know there's a lot there.
Angela Smith: Yeah, I mentioned that word resilience just real quickly when I was introducing myself. But I I thought because I was working already with people with disabilities that getting married to somebody with a disability wouldn't bring on that much of a challenge. But boy was I wrong. You know, just the
Maryann Hobbie: .
Angela Smith: everyday caregiving part. And Michael always said he didn't want me to be his caregiver, he wanted me to be his wife. And, you know, we were fortunate to have some paid caregivers, but on the weekends it was me, traveling it was me. And I learned how to do vowel programs, I learned how to do catheter changes, transfers, you you name it, in hotels we had them switch out mattresses so that we could actually get him onto you know the bed because the mattresses that everybody loves are too high. And
John McAleavey: Right.
Angela Smith: so no matter where whether it was home, away, We did we were we were blessed to be able to do a lot of traveling when our son came in we did that. But the resilience that kind of being the caregiver, the main caregiver to somebody, a lot of that resilience came from watching what he was doing and how he was dealing with his own injuries and how he was with his son and raising him. And so that I saw resilience in him and also in his family. I mean I came into his life ten years afterwards.
John McAleavey: Yeah.
Angela Smith: So I I kinda had a built in support network, which was pretty much his mother who, you know, was doing everything for him during those first ten years. So I had somebody
John McAleavey: Right.
Angela Smith: to go to and, you know, commiserate with a little bit that this ain't easy. How did you do this? Right? And then, you know, get the if I wasn't sure what I was doing, which was a lot of time, get the the knowledge and experience from somebody else. And that's why caregiver support is so so important. That's something
John McAleavey: Yes, yeah.
Angela Smith: we can yeah to talk to.
John McAleavey: Certainly gives all new meaning to your wedding bows and sickness and in health, right, Angela? It really does. man.
Angela Smith: Yeah, in this case I chose it but I didn't think it was gonna be the challenge that it was. But you know, there were so many
John McAleavey: Now l lot of people don't.
Angela Smith: other things that I was grateful for having the support network, you know, and so that the resilience, learning that resilience, it wasn't a you know, I woke up one day and I was resilient. It was it was overtime.
John McAleavey: And thank God you did have that because it's it's not that common, you know. oftentimes that'll happen to a to a husband and wife and and one of them just can't can't come to grips with all of that and and it goes the other way. And so the fact that you were able to stay there and remain and to wear again a couple more hats is is a tribute to you and and the strength of your marriage. how about Marianne? What are some of the challenges that you have faced over the last twelve years? I know You moved from the city and there was no transportation or jobs and you know, Kessler sort of became your second home in in all of this.
Maryann Hobbie: Yes, thank you, Donna. It was a pretty difficult transition to... We had to leave the city. I have a very bad case of PTSD and I had fallen and I call it my 17th fall. I'm like, that's it.
John McAleavey: boy.
Maryann Hobbie: Cars in the city want to go fast. Cars in the city don't want to stop when somebody lurches across the street.
John McAleavey: Ha ha ha.
Maryann Hobbie: And there's always constant sirens and that would always just trigger... my amygdala to start screaming, danger, danger, you know, so was not, that part was not pleasant. However, I had a wonderful life as far as I had access link, which took me everywhere. So I was at the hospital three days a week when I wasn't at the hospital. Another day would be Kessler and another day would be home medical. And it was pretty wonderful. And I had the communities around me 35 years of being at South Orange about the university, the libraries, the towns. And then we moved here, which is We have old farmland family here. However, what I wasn't expecting was the isolation and I called up. mean, the hospital is about 12 minutes away, but they can transport you to work. They can transport you to a doctor's appointment. And it was so funny because I met somebody from Overlook where I used to work and they said, well, you? just call security, they're gonna have to give you a ride, which was very nice of
John McAleavey: Yeah.
Maryann Hobbie: them. But I couldn't get anything anywhere because it all involved transportation. So that was really hard. And
John McAleavey: Yeah.
Maryann Hobbie: Kessler, I was doing another round of outpatient and Bonnie Evans, our former beloved CEO, had found out and came up to me and said, okay, finish this round and then you're coming back here. You gotta do something with us. And I was
John McAleavey: Right.
Maryann Hobbie: all hucked, but. COVID happened. that's those have been my major challenges is just being out here where life is very different.
John McAleavey: It sure is. I can hear the birds chirping in the background. It's like Green Acres, right, Marianne? That's
Maryann Hobbie: Yeah, it is. My wood's right in front of me. I love them.
John McAleavey: terrific. How about Angela? How did becoming parents to Luke change yours and Michael's lives?
Angela Smith: Well, from the very beginning we did try to have our own. and it it wasn't like a second best. I always tell people that when they're like, you know, you decided to kind of you know, when you couldn't have your own to adopt. And it was never that way because obviously going into the process of trying to have our own children with Michael as a quadriplegic, he was told from nineteen eighty one when he got hurt he would never be father. And he was determined to be a father one way or the other, right? And to pr to prove him wrong pretty much. And obviously
John McAleavey: Yeah.
Maryann Hobbie: Ha ha!
Angela Smith: he wanted to be a father. So when Luke arrived at eight and a half months, it was learning how to be a caregiver to two different people now, right? To Michael and to this, you know, little little baby who had just come into our lives. And and
John McAleavey: Yeah.
Angela Smith: then the dynamic to Michael and I changed as well, being parents. So it threw another moment of drawing from whatever strength we could draw from. And a lot of times that was again community, being around other parents with little kids, right?
John McAleavey: Course.
Angela Smith: And that that was where, you know, the connection and the community to be able to be parents to a little child wherever they came from or however they arrived to us, it wa it meant all the difference in the world. was to to connect. And when we became of age to play sports, then that connection grew even stronger because obviously my sports loving husband had him in I don't know, soccer at four and baseball at five. You know, he did all the Cooperstown and everything you can think of. And you get the parents on the sidelines not really paying attention to the game, just talking to each other.
Maryann Hobbie: .
John McAleavey: That's great. And how did Luke take to his father early on? I mean, he he didn't know him as an able-bodied man. He knew him as dad. And and I know I I had just interviewed a gentleman who has had two young girls. They're they're, you know, in their teens now, and they used to ride around on the back of dad's wheelchair. He was the cool dad because all the kids wanted to hang around and ride on the back of dad's off rotor, they used to call it.
Maryann Hobbie: Off-roader. you
John McAleavey: So how did how did Luke take to to all of that?
Angela Smith: Well, it was kind of the same thing, you know. Michael was in a manual chair for most of his life and s young life with Luke, but his shoulders were given out and he was, you know, being a little bit he didn't he felt like he would move backwards by going to a power chair. But he also realized with a little bit of my help and guidance that it would actually make
Maryann Hobbie: Okay.
John McAleavey: Mm-hmm.
Angela Smith: him a more independent parent. And so he became that wheelchair became the same thing for Luke as he got older. something cool, right? Then
Maryann Hobbie: Okay.
John McAleavey: Yeah.
Angela Smith: Mike was able to get out on his own with him, take him onto the ball field, take him out for a Slurpee. Michael was hurt on July eleventh. And in the first couple of years he would cross it off the calendar. And then as he kind of, you know, decided, you know, I'm gonna turn this into something good, they give Slurpees away at seven eleven on July eleven every year. So it became free
John McAleavey: Ha ha ha ha.
Maryann Hobbie: Ha ha.
Angela Smith: Slurpee Day and yeah, that was he would love to you know, i Luke was getting to the age where you want to go out with dad,
John McAleavey: Yeah, yeah.
Angela Smith: right? Sometimes they would bring friends along and they would get their free Slurpees all together and so yeah, I think it and now Luke is, you know, he's always been a a helper of sorts, right? Michael's brother was five when Michael got hurt, so he only knew him as somebody in a wheelchair and then he ended up going to a career in law enforcement and just wanted to be able to help. So I think that that foundation, you know, influences you, you know, even though he lost his dad at twelve, it's there. It's there.
John McAleavey: Sure, sure. How about Marianne? You mentioned earlier that you had suffered from PTSD. Have have you ever gone for outside or professional help to move that ball along?
Maryann Hobbie: I sure have. I was initially trained my first master's is in counseling, so that's not a foreign field to me. I knew nothing about PTSD. I was home for a while and my friend who is a nurse, was an ICU nurse, said,
John McAleavey: Mm-hmm.
Maryann Hobbie: you have PTSD. I see you associated PTSD. I'm like, what are you talking about? Because I just thought it was normal that everybody with SEI was like up all night. That's just what it did. I didn't
John McAleavey: Yeah.
Maryann Hobbie: know. So I was able to find a person who specialized in, it's called eye movement desensitization reprocessing, EMDR.
John McAleavey: Wow, say that ten times fast.
Maryann Hobbie: Yeah. Right. And it's not the same as talk therapy because that just goes round and round in a loop. This works on breaking a physiological connection. It's very complicated, but it was helpful. And I was able to do that first when I lived in South Orange and I took the access link to Morristown, I guess. But then when I moved out here, there was no way to get down to Morristown. I was in trouble. and I was able to finally find someone. And actually I met her once, which is the week before COVID hit. And then I never saw her in person again, but literally I feel like she saved my life because the hallucinations that I had had all would take something to be triggered. And when I was working and so busy, I never knew that. But now that there was space, it was like, what the heck is going on here?
John McAleavey: Yeah.
Maryann Hobbie: So yeah, and it's more prevalent, and I know the foundation, this research, I think one of the model systems folks down in Texas did a study in the last few years and realized that PTSD is prevalent with people with SCIs.
John McAleavey: Mm, it's real. Absolutely. after Michael passed, Angela, where did you find the inner strength to just keep moving forward?
Angela Smith: Yeah, so one of the things I think about is the inner strength before Michael died, right, came a lot from around me, right? It the what I was what was happening around me and all the things being a parent, you know, trying to be a caregiver became my identity, right? So it was it was kind of from that sense. When he passed away, that identity all of a sudden disappeared, right? And all of a sudden I was like, well.
Maryann Hobbie: you you
John McAleavey: Mm-hmm.
Angela Smith: Now what do I do? I knew I was gonna miss him and all the things that would be, you know, grief and loss. But that invisible loss of my identity made me look for inner strength in different ways. So again, connection and community were still there. But when I would go to a grief support group and I did two two different types of group support and one online,
John McAleavey: Yeah.
Maryann Hobbie: Okay.
Angela Smith: the the theme was you have to find that inner strength. People aren't gonna provide it to you, right? very different type of inner strength. And it was more about we all we all protect ourselves and we kind of turtle a little bit after a loss, like like Michael did crossing the July eleventh off the calendar. And you're in a
John McAleavey: Right.
Angela Smith: you're in a waiting room and you feel stuck. What am I gonna do? And just one little step out of that waiting room, finding a little door to go out, right? Whether it's changing furniture in your house, going to a different coffee shop. But in the end When you've when that inner strength is really, really there. I did so much in memory of Michael, and that was helpful, right? To do things in his memory. But I ran for town council in in our borough last year. And when I wrote my bio, it was all about being a stand-in or a surrogate for for Michael. And the person helping me said, you know, you you gotta stand on your own two feet here, right? You know, you've done a lot in his memory, but you are not his stand-in.
Maryann Hobbie: you you
John McAleavey: Yeah.
Angela Smith: And so I had to kind of pat myself on the back a little bit that I had found that inner strength from community, but it was now I was feeling it deeper inside of who I was. And
John McAleavey: Yeah.
Angela Smith: that became that identity of, you know what, it's hard to kind of be proud
Maryann Hobbie: you
Angela Smith: of yourself. And I knew he was proud of me, but I became proud of who I was and what I become. That and the inner strength was really, really down, very deep in inside.
John McAleavey: Yeah. You know, it's something that I refer to as the human spirit. We have it all in inside of us. And and for folks like you and I, Mary Ann, who've had the physical injuries, we we have to summon it. And if we don't, you could wind up going down that rabbit hole and and and just
Maryann Hobbie: Okay.
John McAleavey: throwing in the towel, or you can, pull yourself up by your bootstraps, as they like to say, and get that inner let's go. You know, we can do these things. And that's That's where the inner strength comes from. And and Marianne, I know Angela mentioned the word connectivity and connection. And so w why do you feel it's important for for all of us to to feel connected?
Maryann Hobbie: my goodness. It's interesting. Yesterday, my second book is in the revision process and the editor yesterday asked me to comment a little bit because I had said somewhere in the manuscript about loneliness and isolation. I had said that the attorney general, the surgeon general in 2023 said that loneliness and isolation was an epidemic. And the antidote for that is connection to community. thought holy mackerel, I never read it, never knew that existed. And there I am reading it yesterday. Literally,
John McAleavey: Yeah.
Maryann Hobbie: because without connection, I connect well with my dear. I connect well with Fox. connect well with dogs. I can't with neighbors, but I'm used to like 24 seven practically being with people. But to come here,
John McAleavey: Yeah.
Maryann Hobbie: not be connected. And I tried so hard. I felt like I was always trying. My church was not exactly progressive and that wasn't working. And I couldn't find a place to feel connected. Makes me whole. I mean, I was red. I always wanted I designed disability studies curricula and theology of disability and I read and I, but that didn't make me feel connected. You know, the paper isn't enough. And I was, I guess I was hiding my anger at God. was hiding anger, just like hiding anger because like, what else do want me to do buddy? I am trying so hard. I kept trying.
John McAleavey: Yeah.
Maryann Hobbie: You know, I tried to do retreats for a while. I tried, I kept trying. So. But I need to be connected because I need to know I'm human. mean, honestly, just to go back to Kessler, the halls and
John McAleavey: Yeah.
Maryann Hobbie: say, you look great. I'm like, thank you. You know,
John McAleavey: Mm-hmm.
Maryann Hobbie: and you can say bowel program and people aren't going to run out of the room and you could and you don't have to. It's like shorthand because I love on people there because the people saw me at my worst and they helped me to where I am today. So that's connection. That's. Just like even Angela was saying, because we've all experienced a very unique, different kind of loss. And once you've lived with that loss or experienced a loss, you understand the importance and the power of connection, because that to me is where hope and grace live. So that's my thought.
John McAleavey: That's beautiful. What a beautiful sentiment that is. Terrific, Marianne. How about Angela?
Maryann Hobbie: Thank you.
John McAleavey: You you alluded to it earlier about finding inner strength in different ways. Do you think you could dig deeper and let us know where where did you ultimately find yours when all of a sudden you're now a a single parent grieving the loss of your beloved husband and working a full time job and where did you really find it?
Angela Smith: You know, what I was kind of alluding to the last time is each kind of pivot moment of my life, I had to find it in different ways. So, you know, we always say everybody finds it in different ways, but those ways change over the course of our lives, wherever whatever moment or whatever
Maryann Hobbie: Okay.
Angela Smith: we're dealing with. So as I was saying when when Michael was alive, the inner strength was coming from a community of people who also had spinal cord injuries. Michael was very much involved in the our community advisory board. I think Marianne, you're also on that community advisory board
Maryann Hobbie: Mm.
Angela Smith: that we have here. He was, you know, working on because he was at a big venue there
Maryann Hobbie: Okay.
Angela Smith: where people could go and get tickets for concerts, he became the
Maryann Hobbie: you
Angela Smith: ADA compliance manager. So, you know, he had a community of people there at the different stadiums that they would join together. And then I was kind of pulled into this type of advocacy.
John McAleavey: Yeah.
Angela Smith: yeah, so there was a there was a different type of a community. Not that I'm out of the spinal cord community itself, because I still work in this space, but my communities now to be able to draw strength from after Michael died became my friends who had suffered loss after the had a spousal, you know, a spouse died. And one of them, you know, were planning a trip to Scotland. So this is ten years, her her husband passed away two weeks after Michael. They did not know each other, we did not know each other. So the strength that I drew on, including family, obviously family and faith can never forget that. But just to to dig it down really deep, it was the friendships that I developed from people who had suffered the loss of a spouse. Nobody kind of got the combination exactly right of what I was doing dealing with, you know, with disability and all this stuff. But loss was loss. And I think that's something gr grief and loss is, you know, we all we re we have to recognize that first as a loss. And there's invisible losses that go along with it that are even harder to see. So, you know, that inner strength came from different people, different ways of looking at it, but all came down to dealing with loss in grief at whatever moment it was at.
John McAleavey: Yeah.
Maryann Hobbie: .
John McAleavey: Mm-hmm. Yeah. Yeah, and you have to give yourself time to mourn that loss.
Angela Smith: Yes, yes.
John McAleavey: It's healthy. It really is. And something else that's that's healthy
Angela Smith: Yes, absolutely.
Maryann Hobbie: .
John McAleavey: is and it sort of dovetails off of the connection and connectivity word it for for folks like us, especially Marianne, is purpose. We need we need to have a purpose. Like you say, you were asking God, like what do you want me to do? Sometimes I feel the same way, like when I put my feet on the floor, I'm like, Okay, what do we got in store for me today? I I need to know, like today I knew we were gonna record this podcast, so that I was up last night, yesterday I was preparing and I know that I'm gonna edit this later on and then okay, well now what's tomorrow? What what what am I gonna do tomorrow? And I I don't you know, sometimes you just have to figure it out. So tell us how how does finding a purpose in your world come about now?
Maryann Hobbie: Well, thank you so much of this dovetails again with what Angela was saying too, is finding people that you can connect to and but yeah, and I mentioned already that I had tried to do, I tried, did, had small, sorry, gatherings in my house, retreats. I actually did be on a speaking circuit. I love to speak. but I'm out here in the boonies and I don't drive, so the end. And I love college students and I have always loved college students, love teaching. However, when I got hurt, Kessler wasn't set up with the same kind of resources that they have now because I'm sure they would have gotten me able to be tested. what did I need to do to learn to teach? You know, whatever. However, It's over the years as it's progressed and I've hit some rock bottoms. I was very pleased to work with the Community Advisory Board that Angela mentioned late before and I had volunteered to be on the Planning Committee because rather than do a one-time conference like the Foundation had done before COVID, they came up with the idea of doing three separate events. And what we were able to work with over the few months was to get panelists and speakers. It was awesome. But this is what happened. I went and these people were great. But I'm like, I have no transportation and I'm not
John McAleavey: Mm-hmm.
Maryann Hobbie: there. Where do I want now? And I just kept just and I thought, you know, let me just call Jean. Maybe she has an idea. Maybe I could do some writing because I I was doing I have been doing writing for an online publication. And I love that because I get to interview really exciting people all over the country and up in Canada as well. But I needed something. So when I did call Jean, that writing didn't work. And that's when I kind of knew I was going to have to take the writing. And so I went on Ventured Forth and I started with the memoir that its subtitle is Living with Visible and Invisible Disabilities. or just living. And
John McAleavey: Mm-hmm.
Maryann Hobbie: because that was my way of finding some kind of a purpose. Because the point of the book is that hopefully some people can pick it up and read and say, yeah, okay, yeah, yeah, you're not the only one, me too. So that's basically
John McAleavey: Yeah.
Maryann Hobbie: what I'm able to do with that because it's, again, being in the extrovert that I am, to talk to my dear is fine. But they call me the mayor around here because I think
John McAleavey: Yeah.
Maryann Hobbie: if somebody wants something, they'll text me and who's the sons? What's the dog's name? I'm like, sorry, don't know that stuff.
John McAleavey: Yeah, I was just gonna say, you know, Marianne, you really need to come out of your shell a little bit. You're such a you know you just kinda sit back there. You're a wallflower. my goodness. No.
Angela Smith: Yeah.
Maryann Hobbie: Everybody talk to me. Never been a problem.
Angela Smith: I can I can witness to that because I've been to Mary Ann's house and been out of walking the dog that she is certainly the mayor, everybody recognized her, she talked stopped to talk to everybody and yeah.
John McAleavey: I love it. That's
Maryann Hobbie: Yeah, well.
John McAleavey: terrific. Which will then bring us back around to really why we're here today, ladies, and that's to talk about your your wonderful inner strength program. And Angela, why don't you still start it off? Tell us how did the program come about?
Angela Smith: Yeah. So Marianne touched little bit on the the why, right? She you know, again, Jean Zanka, who she's referring to, is gonna be in the next episode. her and Denise Fife. They were given a philanthropic grant to kind of do what's next. Like Marianne was saying, what are the next steps? And most of the input came from people with spinal crit injuries or their caregivers. As to what's next. And so community support transition from wherever, if it's from the inpatient to home, if you're at home and you develop a pressure sore, and or like my husband, he was on a vent the last four months of his life. Those are all transitions that can happen while you're in the community. So they they ran with that and developed some wonderful programs, which they will be talking about. But the one that Marianne was asked. by Jin Dr. Ginzenka to do and to co-facilitate and with you know me eventually was a program completely remote online called Inner Strength. And one of the things that Miriam was talking about is people who don't have transportation, right? It's
John McAleavey: Yeah.
Angela Smith: not a traditional support group. We call it a gathering. And we're trying When people register, and I think you're gonna put the registration link in the in the notes, John, right? As as interested. It's a it's a drop-in. People, you know, aren't signing away every second Wednesday to to be a part of inner strength. But you register, you come in when you can. it's you know, set time, I think it's seven PM second Wednesday of the month, all remote. And we're we're kind of all there to speak about.
John McAleavey: We will do that, yes, yes.
Angela Smith: exactly the type of questions that you've been asking Marianne and I, right? What is inner strength? Have you found
Maryann Hobbie: .
John McAleavey: Sure.
Angela Smith: it? Have you lost it? Right? What are the things that have gotten in the way of finding it? And kind of d kind of drilling down on matters of the heart. And so we've had about four, three or four sessions, gatherings, and all we never know who's coming and
John McAleavey: Mm-hmm.
Angela Smith: we all kind of try to you know just share. You know, hey, I get it, I understand it, or yeah, I've I haven't never had to deal with that. That must be horrible, right? To have to deal with and just really sort of try to support each other and connect that way. So
Maryann Hobbie: Okay.
John McAleavey: Yes. I can attest to it. I I was asked you guys had sent me an email a while back, I guess it was maybe a month or two ago, and I was going through a rut. I heard Mary Ann say before she's hit rock bottom a few times. I was I was bouncing on rock bottom a couple of weeks back and you know, just to look at faces in these boxes here, but you know, we're not just boxes here, we're human beings and we all
Maryann Hobbie: Thank So,
John McAleavey: have a lot of the same problems and the same trials and tribulations that we're going through. And I was able to get a lot off my chest and I could see some other folks that were on there were nodding their head like, you know, yeah, I got that too, you know, John, I'm feeling all of that too. And not that it makes you feel better that someone else is going through what you're going through, but just to know that you're not alone in all of this is is somewhat comforting. And so what, Mary Ann, would you say are your hopes for the inner strength group gatherings?
Maryann Hobbie: Many that people find connection, number one, because when you're connected, you don't have to feel so alone. And it's not a solution. It's just a connection that gives power that lets you know, let you know that you're not alone. Like I said, and When I was able to do something like this before I moved down at Kessler, people would come in and so often your families are cheerleaders. They want you to succeed. They want to tell you it's okay. And you feel like, I don't want to even be here today, quite frankly. And
John McAleavey: Yeah.
Maryann Hobbie: if you can go to a place like our small space is and just say, you I really can't stand this stuff anymore because loss is ongoing. To me, life is just an onion that keeps peeling. And sometimes there's loss that you didn't even want to look at before, and you got to come terms with it. And that's not a bad thing. And it's not living in negativity, it's acknowledging it. And I would try to, I tried so long to hide my anger at God. I've tried to push all that stuff down. But when you're just sitting together in a group, you're connecting again, a power. And the nice part is that if it grows big enough, And one of those meetings, Angela can work with the caregivers, I can work with the SEIs, because we just want to work together, because this road of life is bumpy. And
John McAleavey: Yeah, yeah.
Maryann Hobbie: just trying to smooth it out a bit, not answers just to be together, which to me is the whole point of my life is love, right? And if it's about love, then I think that's, so those are my hopes for the Inner Strength Group, that people are brave enough to fill out that little thing on the line and show up and you're not getting your life taken away from you. And it's not being recorded and that's it. I just, it's only an hour. So I invite
John McAleavey: It's only an hour. Right?
Maryann Hobbie: anyone who listens or to tell a friend and just come, just come
John McAleavey: Yeah.
Maryann Hobbie: and hop in and like, let's, let's make each other stronger.
John McAleavey: Yeah, I felt
Angela Smith: Yes.
John McAleavey: a really good vibe and a good energy. It was it there was nothing down about it. There was not it it wasn't any like that. It was you know, I I I really felt better about myself when I was finished with all of that. And so that's a tribute to both of you and that the program that you put together. If you could tell us once again how can people join, I'll put the link in the bottom, but if you know the link off the top of your head, you could mention that here. And here's your platform to to speak it from
Angela Smith: Okay.
John McAleavey: the from the rafters.
Angela Smith: Probably the easiest way is to go to Kessler Foundation.org and do a search for inner strength. That's the easiest way at this point without having the link. And you know, because obviously John is gonna work his magic to edit all of this, so it might not come out right away. But if
John McAleavey: Mm-hmm.
Angela Smith: you're wanting to, you know, kind of register and join us, that would be the quickest way, because it's right on our website and the registration link is right there too.
John McAleavey: Yes. And last but not least, ladies, we have our final question in closing. And we've we've kind of touched on it a couple of different ways. I know, Angela, you have for the most part, but Marianne, I want to give you an opportunity. we talk about how people find their inner strength in different ways. Where have you over these last few years been able to find yours to to be as strong and proud and smiling as you are today?
Maryann Hobbie: Boy, there's days that I'm not strong and proud and smiling. My inner strength comes, I, for me, myself, I have a divine, I have a God that lives inside of me. I fired the old gods
John McAleavey: Ha ha ha.
Maryann Hobbie: and... the religions and no, that's not about it. It's about, it's a power of love that lives inside of me. And I found that inner strength when I gave up fighting so much and tried to surrender and accept this is what's going on right now. You might not like it, but accept it. And now that you can accept it, now what do I do? Then I can ask that question. And that's been a lot of big help for me. And then, cause I do work with other people on the road to finding peace and strength on their own. And so I'm used to the bumps, but that's what it is. If when I can surrender and say, give up, I'm not trying to run the universe anymore, I can't figure it out, help, then I can start to hear better. So that's where my inner strength comes from,
John McAleavey: Yeah.
Maryann Hobbie: from inside anyway.
John McAleavey: Sure. And how about Angela? Do you want to tie a bow on this for us? I know maybe from the a caregiver's perspective where you find your your inner strength.
Angela Smith: Yeah, again, it's listening and it's it's okay to not be okay. And once you kind of come to that, I think you can listen better. And that's what Marianne was just saying, right? To have that that and we're busy caregivers, right? We don't have a whole lot of time for ourselves. Right.
John McAleavey: Exactly.
Angela Smith: But if you could just grab five minutes, just sit, listen and and and hear what is coming through. It might be this day is horrible, right?
John McAleavey: Yeah.
Angela Smith: Whatever
Maryann Hobbie: Mm.
Angela Smith: it is, you're gonna have that moment of your your own space, five minutes, grab five minutes and and listen to things that you're hearing because most of the time the effort or the focus is going to be on the person that you're caring for, right? And
John McAleavey: Yeah.
Angela Smith: people aren't necessarily gonna ask you how you're doing. And I think that's really important that you ask yourself that question as a caregiver.
John McAleavey: Maybe crank up some Springsteen in the background too, huh?
Angela Smith: Well, whatever whatever it takes,
Maryann Hobbie: Hahaha!
Angela Smith: you know, yeah it for the in be be in nature, whatever you can do, even if it's just sitting in your your house with a cup of coffee, right?
John McAleavey: Yeah.
Angela Smith: And not having to feel like you gotta go somewhere. And to I love going to into nature music, things like that, which certainly are helpful, but to actually listen and have time to just listen and
Maryann Hobbie: .
Angela Smith: and focus a little bit on what you're hearing yourself say. Like that inner voice and what's it what's it telling you? Right.
Maryann Hobbie: Mm.
Angela Smith: Yeah, I hear I hear Springsteen telling me like things that match with me, right? Hey, I just this is this is my dude right here, right? But what's it all, how you're all putting it together in your own mind and having that that time. And
John McAleavey: Yeah. Yep.
Angela Smith: inner inner strength kind of gives people a little bit of a safe space. Yes, it's not just your own mind and your own thoughts, but I think it gives you a space to come and maybe think about those
Maryann Hobbie: you
Angela Smith: with others who are also
John McAleavey: Yes.
Angela Smith: thinking about those things at the same time.
John McAleavey: Well, Marianne Hobby and Angela Smith, thank you so much for joining me today to tell us about your inner strength program. Thanks for all you do for the community. And I am proud and honored to call you not only colleagues but good friends. And so I really appreciate you being here today.
Maryann Hobbie: Thank you so much. Thank you, Angela.
Angela Smith: Thank you so much, John. Thank you, Marianne. Yep.
John McAleavey: Before we go, I'd like to tell you about one of my favorite events of the year, Kessler Foundation's Fallfest, coming up on October 4, from noon until 3 p.m. at Kessler Campus in West Orange, New Jersey. Fallfest is a free community event that brings together people with disabilities, their families, caregivers, friends, and neighbors for an afternoon of fun connection and discovery. There will be plenty to enjoy, including games, activities, food, entertainment, and opportunities to connect with others in the disability community. But what makes Fallfest especially meaningful is that it brings together so many organizations that serve people with disabilities. Attendees can meet exhibitors and vendors from across New Jersey, learn about programs and services, discover adaptive products and techniques, and And connect with resources that can help people live, work, and thrive. It's also an opportunity to learn about the innovative rehabilitation research underway at Kessler Foundation and meet the scientists working to improve mobility, cognition, and quality of life for people with disabilities. Fallfest helps connect this important work with the community it serves. Whether you're looking for resources, interested in learning about research, Or simply searching for a fun and inclusive day out with family and friends, I hope you'll join us. To learn more or register, visit KesslerFoundation.org backslash fall dash fest. We look forward to seeing you on October fourth.
Angela Smith: Thanks, John.
Maryann Hobbie: You're most welcome. Glad to be here.
John McAleavey: Yes. And why don't we start right at the top and I want to know more about yourselves before we get into the inner strength program that you're doing so well. So Angela, why don't you tell us how did you get involved working in the spinal cord injury and disabled community?
Angela Smith: Well, John, like so many of us who work in this space, there's always a personal story behind it. And so my personal story is I met my husband at my very first job out of graduate school, and he was a patient, he was a C five six quad where I was working, and we were he wanted to do adapted sports, particularly racing, and that was my educational background was in adapted sports and exercise. So we got kind of stuck together for a a good amount of time. And
John McAleavey: Mm.
Angela Smith: you know, I I got to know him as a person pretty much within five minutes after kind of the first session that we were working together in training. I just saw just such a compassionate man who had such a wit about him. And during the the times that we were working together to get him strong enough to do what he said. A race where he could get a free T shirt in the bagel, really. And
John McAleavey: Yeah.
Maryann Hobbie: Okay.
Angela Smith: we had a lot of time to find out what we had in common. And it was more about what we had in common than the difference that he was somebody who had a disability and I did not. We found out we were both huge music fans, fans of Bruce Springsteen, that we were both we are giant fans. But we differed a little bit in baseball. He was the Met fan, I was the Yankee fan, but
Maryann Hobbie: Mm-hmm.
Angela Smith: We we made it work and you know we decided to build a life together. We adopted our son Luke at eight and a half months, he came from Korea and you know pretty much unfortunately we lost Michael ten years ago when Luke was twelve and you know it it was not an easy time dealing with Michael's loss and trying to raise a twelve year old boy coming into his teenage years. as mom, but
John McAleavey: Had your hands full.
Angela Smith: yeah, I I I did, but I had I had a lot
John McAleavey: Yeah.
Angela Smith: of support and you know, we've gotten to the point now that, you know, Luke is in the senior year of college, about ready to probably be make me a complete empty nester because he's never really left. So which which would be kinda nice I think. But yeah.
Maryann Hobbie: .
John McAleavey: Angela, I don't mean to interrupt, but I'm told it's not empty nester anymore. I've heard it's free bird. Parents are now free birds. When your children Yes.
Angela Smith: well yeah, I mean even with him living at home, it it's almost like when people ask me, you know, how's Luke doing? I say who's we really talk to each other much. But during this time
John McAleavey: Yeah, right. Exactly.
Angela Smith: that I just described, you know, I was working, you know, at a small a small rehab where we met and then I s have pretty much given twenty five years between working at Kessel Institute and Kessler Foundation. The majority
John McAleavey: Yeah.
Angela Smith: of that time the last twenty years spent working at the foundation in various roles in research and in my my new role now as a community engagement specialist where I'm helping to serve all the different populations spinal grid injury, traumatic brain injury, multiple sclerosis that we we work with. So that's
John McAleavey: Yes.
Angela Smith: my little professional plug there for all the different things that we do and that I'm involved with. So
John McAleavey: You wear a lot of hats. That's excellent. How about you, Marianne? Tell us about yourself. I know you and I have something in common and that's three those three letters, S C I, right? We both have a spinal cord injury. So tell us about your journey.
Maryann Hobbie: Well, in the summer of 2013, I had just returned from a faculty retreat in Rome with the Seton Hall University. And I had been asked when I was there to teach in this new program they had Catholic studies. And I was so excited because I was already teaching, but I wanted to teach in program. That happened. had just Our teenager went to college for a semester and came home as a mama. So we had a new baby girl in the house and infant. And one morning I woke up and I couldn't swallow. And I have no memory for three and a half, almost six months. I remember being at the birth of my grandbaby, holding her one time, and then that's it. And I woke up and I couldn't swallow. And I woke up again. That was July 27th. I woke up and it was time for the Halloween parade at Seton
Angela Smith: Well.
Maryann Hobbie: at Kessler. And I remember saying to a nurse one day, said, was I sick? She's like,
John McAleavey: my gosh.
Maryann Hobbie: you were a sick puppy. I'm like, I was.
John McAleavey: Yeah.
Maryann Hobbie: I was in Noro ICU for a month. I was dying and it ended up C4 to C7 incomplete on event. I and the Kessler, the Kessler care was changed my life and the whole hospitalization between Kessler between the hospital Kessler on nursing home and in Kessler was eight and a half months. I was able to, I became ambulatory decided to do two things. One is I went to chaplaincy school, a DVR would pay for, I wanted to get my doctorate because I had never finished it, but that didn't work. And
John McAleavey: Mm-hmm.
Maryann Hobbie: Chaplain. While I was in Chaplaincy School at Overlook Hospital, I started to volunteer at Kessler, which was my love. And that's just evolved over time. And Jean Zanka got me involved in the research, some research pieces. And so that's my Kessler story, and that's my SCI story. And I live with multiple invisible disabilities. And we'll walk a little funny than the average person, but that's okay.
John McAleavey: That's your story and you're sticking to it. I like that, Mary Ann. We do walk
Maryann Hobbie: Here you go.
John McAleavey: a little differently, right? We like to refer to ourselves as the unicorns. Yeah. Folks that can walk with spinal cord injuries, which is not too common, you know, when people hear spinal cord injury, they think wheelchair, wheelchair, wheelchair. And so, you know, you and I can walk. It's a little funny and we have you know, I know I have very limited to to no use of my uppers, my arms, hands and fingers, and so, you know, these injuries comes in all they come in all shapes and sizes and You know, you y you live and learn and you meet people every day and it's like, whoa, you have a spinal cord injury? And it's like, wow, yeah. So why don't we hop into some questions now? Angela, first of all, why did being or what did being Michael's wife and caregiver teach you about love and resilience? Because I know there's a lot there.
Angela Smith: Yeah, I mentioned that word resilience just real quickly when I was introducing myself. But I I thought because I was working already with people with disabilities that getting married to somebody with a disability wouldn't bring on that much of a challenge. But boy was I wrong. You know, just the
Maryann Hobbie: .
Angela Smith: everyday caregiving part. And Michael always said he didn't want me to be his caregiver, he wanted me to be his wife. And, you know, we were fortunate to have some paid caregivers, but on the weekends it was me, traveling it was me. And I learned how to do vowel programs, I learned how to do catheter changes, transfers, you you name it, in hotels we had them switch out mattresses so that we could actually get him onto you know the bed because the mattresses that everybody loves are too high. And
John McAleavey: Right.
Angela Smith: so no matter where whether it was home, away, We did we were we were blessed to be able to do a lot of traveling when our son came in we did that. But the resilience that kind of being the caregiver, the main caregiver to somebody, a lot of that resilience came from watching what he was doing and how he was dealing with his own injuries and how he was with his son and raising him. And so that I saw resilience in him and also in his family. I mean I came into his life ten years afterwards.
John McAleavey: Yeah.
Angela Smith: So I I kinda had a built in support network, which was pretty much his mother who, you know, was doing everything for him during those first ten years. So I had somebody
John McAleavey: Right.
Angela Smith: to go to and, you know, commiserate with a little bit that this ain't easy. How did you do this? Right? And then, you know, get the if I wasn't sure what I was doing, which was a lot of time, get the the knowledge and experience from somebody else. And that's why caregiver support is so so important. That's something
John McAleavey: Yes, yeah.
Angela Smith: we can yeah to talk to.
John McAleavey: Certainly gives all new meaning to your wedding bows and sickness and in health, right, Angela? It really does. man.
Angela Smith: Yeah, in this case I chose it but I didn't think it was gonna be the challenge that it was. But you know, there were so many
John McAleavey: Now l lot of people don't.
Angela Smith: other things that I was grateful for having the support network, you know, and so that the resilience, learning that resilience, it wasn't a you know, I woke up one day and I was resilient. It was it was overtime.
John McAleavey: And thank God you did have that because it's it's not that common, you know. oftentimes that'll happen to a to a husband and wife and and one of them just can't can't come to grips with all of that and and it goes the other way. And so the fact that you were able to stay there and remain and to wear again a couple more hats is is a tribute to you and and the strength of your marriage. how about Marianne? What are some of the challenges that you have faced over the last twelve years? I know You moved from the city and there was no transportation or jobs and you know, Kessler sort of became your second home in in all of this.
Maryann Hobbie: Yes, thank you, Donna. It was a pretty difficult transition to... We had to leave the city. I have a very bad case of PTSD and I had fallen and I call it my 17th fall. I'm like, that's it.
John McAleavey: boy.
Maryann Hobbie: Cars in the city want to go fast. Cars in the city don't want to stop when somebody lurches across the street.
John McAleavey: Ha ha ha.
Maryann Hobbie: And there's always constant sirens and that would always just trigger... my amygdala to start screaming, danger, danger, you know, so was not, that part was not pleasant. However, I had a wonderful life as far as I had access link, which took me everywhere. So I was at the hospital three days a week when I wasn't at the hospital. Another day would be Kessler and another day would be home medical. And it was pretty wonderful. And I had the communities around me 35 years of being at South Orange about the university, the libraries, the towns. And then we moved here, which is We have old farmland family here. However, what I wasn't expecting was the isolation and I called up. mean, the hospital is about 12 minutes away, but they can transport you to work. They can transport you to a doctor's appointment. And it was so funny because I met somebody from Overlook where I used to work and they said, well, you? just call security, they're gonna have to give you a ride, which was very nice of
John McAleavey: Yeah.
Maryann Hobbie: them. But I couldn't get anything anywhere because it all involved transportation. So that was really hard. And
John McAleavey: Yeah.
Maryann Hobbie: Kessler, I was doing another round of outpatient and Bonnie Evans, our former beloved CEO, had found out and came up to me and said, okay, finish this round and then you're coming back here. You gotta do something with us. And I was
John McAleavey: Right.
Maryann Hobbie: all hucked, but. COVID happened. that's those have been my major challenges is just being out here where life is very different.
John McAleavey: It sure is. I can hear the birds chirping in the background. It's like Green Acres, right, Marianne? That's
Maryann Hobbie: Yeah, it is. My wood's right in front of me. I love them.
John McAleavey: terrific. How about Angela? How did becoming parents to Luke change yours and Michael's lives?
Angela Smith: Well, from the very beginning we did try to have our own. and it it wasn't like a second best. I always tell people that when they're like, you know, you decided to kind of you know, when you couldn't have your own to adopt. And it was never that way because obviously going into the process of trying to have our own children with Michael as a quadriplegic, he was told from nineteen eighty one when he got hurt he would never be father. And he was determined to be a father one way or the other, right? And to pr to prove him wrong pretty much. And obviously
John McAleavey: Yeah.
Maryann Hobbie: Ha ha!
Angela Smith: he wanted to be a father. So when Luke arrived at eight and a half months, it was learning how to be a caregiver to two different people now, right? To Michael and to this, you know, little little baby who had just come into our lives. And and
John McAleavey: Yeah.
Angela Smith: then the dynamic to Michael and I changed as well, being parents. So it threw another moment of drawing from whatever strength we could draw from. And a lot of times that was again community, being around other parents with little kids, right?
John McAleavey: Course.
Angela Smith: And that that was where, you know, the connection and the community to be able to be parents to a little child wherever they came from or however they arrived to us, it wa it meant all the difference in the world. was to to connect. And when we became of age to play sports, then that connection grew even stronger because obviously my sports loving husband had him in I don't know, soccer at four and baseball at five. You know, he did all the Cooperstown and everything you can think of. And you get the parents on the sidelines not really paying attention to the game, just talking to each other.
Maryann Hobbie: .
John McAleavey: That's great. And how did Luke take to his father early on? I mean, he he didn't know him as an able-bodied man. He knew him as dad. And and I know I I had just interviewed a gentleman who has had two young girls. They're they're, you know, in their teens now, and they used to ride around on the back of dad's wheelchair. He was the cool dad because all the kids wanted to hang around and ride on the back of dad's off rotor, they used to call it.
Maryann Hobbie: Off-roader. you
John McAleavey: So how did how did Luke take to to all of that?
Angela Smith: Well, it was kind of the same thing, you know. Michael was in a manual chair for most of his life and s young life with Luke, but his shoulders were given out and he was, you know, being a little bit he didn't he felt like he would move backwards by going to a power chair. But he also realized with a little bit of my help and guidance that it would actually make
Maryann Hobbie: Okay.
John McAleavey: Mm-hmm.
Angela Smith: him a more independent parent. And so he became that wheelchair became the same thing for Luke as he got older. something cool, right? Then
Maryann Hobbie: Okay.
John McAleavey: Yeah.
Angela Smith: Mike was able to get out on his own with him, take him onto the ball field, take him out for a Slurpee. Michael was hurt on July eleventh. And in the first couple of years he would cross it off the calendar. And then as he kind of, you know, decided, you know, I'm gonna turn this into something good, they give Slurpees away at seven eleven on July eleven every year. So it became free
John McAleavey: Ha ha ha ha.
Maryann Hobbie: Ha ha.
Angela Smith: Slurpee Day and yeah, that was he would love to you know, i Luke was getting to the age where you want to go out with dad,
John McAleavey: Yeah, yeah.
Angela Smith: right? Sometimes they would bring friends along and they would get their free Slurpees all together and so yeah, I think it and now Luke is, you know, he's always been a a helper of sorts, right? Michael's brother was five when Michael got hurt, so he only knew him as somebody in a wheelchair and then he ended up going to a career in law enforcement and just wanted to be able to help. So I think that that foundation, you know, influences you, you know, even though he lost his dad at twelve, it's there. It's there.
John McAleavey: Sure, sure. How about Marianne? You mentioned earlier that you had suffered from PTSD. Have have you ever gone for outside or professional help to move that ball along?
Maryann Hobbie: I sure have. I was initially trained my first master's is in counseling, so that's not a foreign field to me. I knew nothing about PTSD. I was home for a while and my friend who is a nurse, was an ICU nurse, said,
John McAleavey: Mm-hmm.
Maryann Hobbie: you have PTSD. I see you associated PTSD. I'm like, what are you talking about? Because I just thought it was normal that everybody with SEI was like up all night. That's just what it did. I didn't
John McAleavey: Yeah.
Maryann Hobbie: know. So I was able to find a person who specialized in, it's called eye movement desensitization reprocessing, EMDR.
John McAleavey: Wow, say that ten times fast.
Maryann Hobbie: Yeah. Right. And it's not the same as talk therapy because that just goes round and round in a loop. This works on breaking a physiological connection. It's very complicated, but it was helpful. And I was able to do that first when I lived in South Orange and I took the access link to Morristown, I guess. But then when I moved out here, there was no way to get down to Morristown. I was in trouble. and I was able to finally find someone. And actually I met her once, which is the week before COVID hit. And then I never saw her in person again, but literally I feel like she saved my life because the hallucinations that I had had all would take something to be triggered. And when I was working and so busy, I never knew that. But now that there was space, it was like, what the heck is going on here?
John McAleavey: Yeah.
Maryann Hobbie: So yeah, and it's more prevalent, and I know the foundation, this research, I think one of the model systems folks down in Texas did a study in the last few years and realized that PTSD is prevalent with people with SCIs.
John McAleavey: Mm, it's real. Absolutely. after Michael passed, Angela, where did you find the inner strength to just keep moving forward?
Angela Smith: Yeah, so one of the things I think about is the inner strength before Michael died, right, came a lot from around me, right? It the what I was what was happening around me and all the things being a parent, you know, trying to be a caregiver became my identity, right? So it was it was kind of from that sense. When he passed away, that identity all of a sudden disappeared, right? And all of a sudden I was like, well.
Maryann Hobbie: you you
John McAleavey: Mm-hmm.
Angela Smith: Now what do I do? I knew I was gonna miss him and all the things that would be, you know, grief and loss. But that invisible loss of my identity made me look for inner strength in different ways. So again, connection and community were still there. But when I would go to a grief support group and I did two two different types of group support and one online,
John McAleavey: Yeah.
Maryann Hobbie: Okay.
Angela Smith: the the theme was you have to find that inner strength. People aren't gonna provide it to you, right? very different type of inner strength. And it was more about we all we all protect ourselves and we kind of turtle a little bit after a loss, like like Michael did crossing the July eleventh off the calendar. And you're in a
John McAleavey: Right.
Angela Smith: you're in a waiting room and you feel stuck. What am I gonna do? And just one little step out of that waiting room, finding a little door to go out, right? Whether it's changing furniture in your house, going to a different coffee shop. But in the end When you've when that inner strength is really, really there. I did so much in memory of Michael, and that was helpful, right? To do things in his memory. But I ran for town council in in our borough last year. And when I wrote my bio, it was all about being a stand-in or a surrogate for for Michael. And the person helping me said, you know, you you gotta stand on your own two feet here, right? You know, you've done a lot in his memory, but you are not his stand-in.
Maryann Hobbie: you you
John McAleavey: Yeah.
Angela Smith: And so I had to kind of pat myself on the back a little bit that I had found that inner strength from community, but it was now I was feeling it deeper inside of who I was. And
John McAleavey: Yeah.
Angela Smith: that became that identity of, you know what, it's hard to kind of be proud
Maryann Hobbie: you
Angela Smith: of yourself. And I knew he was proud of me, but I became proud of who I was and what I become. That and the inner strength was really, really down, very deep in inside.
John McAleavey: Yeah. You know, it's something that I refer to as the human spirit. We have it all in inside of us. And and for folks like you and I, Mary Ann, who've had the physical injuries, we we have to summon it. And if we don't, you could wind up going down that rabbit hole and and and just
Maryann Hobbie: Okay.
John McAleavey: throwing in the towel, or you can, pull yourself up by your bootstraps, as they like to say, and get that inner let's go. You know, we can do these things. And that's That's where the inner strength comes from. And and Marianne, I know Angela mentioned the word connectivity and connection. And so w why do you feel it's important for for all of us to to feel connected?
Maryann Hobbie: my goodness. It's interesting. Yesterday, my second book is in the revision process and the editor yesterday asked me to comment a little bit because I had said somewhere in the manuscript about loneliness and isolation. I had said that the attorney general, the surgeon general in 2023 said that loneliness and isolation was an epidemic. And the antidote for that is connection to community. thought holy mackerel, I never read it, never knew that existed. And there I am reading it yesterday. Literally,
John McAleavey: Yeah.
Maryann Hobbie: because without connection, I connect well with my dear. I connect well with Fox. connect well with dogs. I can't with neighbors, but I'm used to like 24 seven practically being with people. But to come here,
John McAleavey: Yeah.
Maryann Hobbie: not be connected. And I tried so hard. I felt like I was always trying. My church was not exactly progressive and that wasn't working. And I couldn't find a place to feel connected. Makes me whole. I mean, I was red. I always wanted I designed disability studies curricula and theology of disability and I read and I, but that didn't make me feel connected. You know, the paper isn't enough. And I was, I guess I was hiding my anger at God. was hiding anger, just like hiding anger because like, what else do want me to do buddy? I am trying so hard. I kept trying.
John McAleavey: Yeah.
Maryann Hobbie: You know, I tried to do retreats for a while. I tried, I kept trying. So. But I need to be connected because I need to know I'm human. mean, honestly, just to go back to Kessler, the halls and
John McAleavey: Yeah.
Maryann Hobbie: say, you look great. I'm like, thank you. You know,
John McAleavey: Mm-hmm.
Maryann Hobbie: and you can say bowel program and people aren't going to run out of the room and you could and you don't have to. It's like shorthand because I love on people there because the people saw me at my worst and they helped me to where I am today. So that's connection. That's. Just like even Angela was saying, because we've all experienced a very unique, different kind of loss. And once you've lived with that loss or experienced a loss, you understand the importance and the power of connection, because that to me is where hope and grace live. So that's my thought.
John McAleavey: That's beautiful. What a beautiful sentiment that is. Terrific, Marianne. How about Angela?
Maryann Hobbie: Thank you.
John McAleavey: You you alluded to it earlier about finding inner strength in different ways. Do you think you could dig deeper and let us know where where did you ultimately find yours when all of a sudden you're now a a single parent grieving the loss of your beloved husband and working a full time job and where did you really find it?
Angela Smith: You know, what I was kind of alluding to the last time is each kind of pivot moment of my life, I had to find it in different ways. So, you know, we always say everybody finds it in different ways, but those ways change over the course of our lives, wherever whatever moment or whatever
Maryann Hobbie: Okay.
Angela Smith: we're dealing with. So as I was saying when when Michael was alive, the inner strength was coming from a community of people who also had spinal cord injuries. Michael was very much involved in the our community advisory board. I think Marianne, you're also on that community advisory board
Maryann Hobbie: Mm.
Angela Smith: that we have here. He was, you know, working on because he was at a big venue there
Maryann Hobbie: Okay.
Angela Smith: where people could go and get tickets for concerts, he became the
Maryann Hobbie: you
Angela Smith: ADA compliance manager. So, you know, he had a community of people there at the different stadiums that they would join together. And then I was kind of pulled into this type of advocacy.
John McAleavey: Yeah.
Angela Smith: yeah, so there was a there was a different type of a community. Not that I'm out of the spinal cord community itself, because I still work in this space, but my communities now to be able to draw strength from after Michael died became my friends who had suffered loss after the had a spousal, you know, a spouse died. And one of them, you know, were planning a trip to Scotland. So this is ten years, her her husband passed away two weeks after Michael. They did not know each other, we did not know each other. So the strength that I drew on, including family, obviously family and faith can never forget that. But just to to dig it down really deep, it was the friendships that I developed from people who had suffered the loss of a spouse. Nobody kind of got the combination exactly right of what I was doing dealing with, you know, with disability and all this stuff. But loss was loss. And I think that's something gr grief and loss is, you know, we all we re we have to recognize that first as a loss. And there's invisible losses that go along with it that are even harder to see. So, you know, that inner strength came from different people, different ways of looking at it, but all came down to dealing with loss in grief at whatever moment it was at.
John McAleavey: Yeah.
Maryann Hobbie: .
John McAleavey: Mm-hmm. Yeah. Yeah, and you have to give yourself time to mourn that loss.
Angela Smith: Yes, yes.
John McAleavey: It's healthy. It really is. And something else that's that's healthy
Angela Smith: Yes, absolutely.
Maryann Hobbie: .
John McAleavey: is and it sort of dovetails off of the connection and connectivity word it for for folks like us, especially Marianne, is purpose. We need we need to have a purpose. Like you say, you were asking God, like what do you want me to do? Sometimes I feel the same way, like when I put my feet on the floor, I'm like, Okay, what do we got in store for me today? I I need to know, like today I knew we were gonna record this podcast, so that I was up last night, yesterday I was preparing and I know that I'm gonna edit this later on and then okay, well now what's tomorrow? What what what am I gonna do tomorrow? And I I don't you know, sometimes you just have to figure it out. So tell us how how does finding a purpose in your world come about now?
Maryann Hobbie: Well, thank you so much of this dovetails again with what Angela was saying too, is finding people that you can connect to and but yeah, and I mentioned already that I had tried to do, I tried, did, had small, sorry, gatherings in my house, retreats. I actually did be on a speaking circuit. I love to speak. but I'm out here in the boonies and I don't drive, so the end. And I love college students and I have always loved college students, love teaching. However, when I got hurt, Kessler wasn't set up with the same kind of resources that they have now because I'm sure they would have gotten me able to be tested. what did I need to do to learn to teach? You know, whatever. However, It's over the years as it's progressed and I've hit some rock bottoms. I was very pleased to work with the Community Advisory Board that Angela mentioned late before and I had volunteered to be on the Planning Committee because rather than do a one-time conference like the Foundation had done before COVID, they came up with the idea of doing three separate events. And what we were able to work with over the few months was to get panelists and speakers. It was awesome. But this is what happened. I went and these people were great. But I'm like, I have no transportation and I'm not
John McAleavey: Mm-hmm.
Maryann Hobbie: there. Where do I want now? And I just kept just and I thought, you know, let me just call Jean. Maybe she has an idea. Maybe I could do some writing because I I was doing I have been doing writing for an online publication. And I love that because I get to interview really exciting people all over the country and up in Canada as well. But I needed something. So when I did call Jean, that writing didn't work. And that's when I kind of knew I was going to have to take the writing. And so I went on Ventured Forth and I started with the memoir that its subtitle is Living with Visible and Invisible Disabilities. or just living. And
John McAleavey: Mm-hmm.
Maryann Hobbie: because that was my way of finding some kind of a purpose. Because the point of the book is that hopefully some people can pick it up and read and say, yeah, okay, yeah, yeah, you're not the only one, me too. So that's basically
John McAleavey: Yeah.
Maryann Hobbie: what I'm able to do with that because it's, again, being in the extrovert that I am, to talk to my dear is fine. But they call me the mayor around here because I think
John McAleavey: Yeah.
Maryann Hobbie: if somebody wants something, they'll text me and who's the sons? What's the dog's name? I'm like, sorry, don't know that stuff.
John McAleavey: Yeah, I was just gonna say, you know, Marianne, you really need to come out of your shell a little bit. You're such a you know you just kinda sit back there. You're a wallflower. my goodness. No.
Angela Smith: Yeah.
Maryann Hobbie: Everybody talk to me. Never been a problem.
Angela Smith: I can I can witness to that because I've been to Mary Ann's house and been out of walking the dog that she is certainly the mayor, everybody recognized her, she talked stopped to talk to everybody and yeah.
John McAleavey: I love it. That's
Maryann Hobbie: Yeah, well.
John McAleavey: terrific. Which will then bring us back around to really why we're here today, ladies, and that's to talk about your your wonderful inner strength program. And Angela, why don't you still start it off? Tell us how did the program come about?
Angela Smith: Yeah. So Marianne touched little bit on the the why, right? She you know, again, Jean Zanka, who she's referring to, is gonna be in the next episode. her and Denise Fife. They were given a philanthropic grant to kind of do what's next. Like Marianne was saying, what are the next steps? And most of the input came from people with spinal crit injuries or their caregivers. As to what's next. And so community support transition from wherever, if it's from the inpatient to home, if you're at home and you develop a pressure sore, and or like my husband, he was on a vent the last four months of his life. Those are all transitions that can happen while you're in the community. So they they ran with that and developed some wonderful programs, which they will be talking about. But the one that Marianne was asked. by Jin Dr. Ginzenka to do and to co-facilitate and with you know me eventually was a program completely remote online called Inner Strength. And one of the things that Miriam was talking about is people who don't have transportation, right? It's
John McAleavey: Yeah.
Angela Smith: not a traditional support group. We call it a gathering. And we're trying When people register, and I think you're gonna put the registration link in the in the notes, John, right? As as interested. It's a it's a drop-in. People, you know, aren't signing away every second Wednesday to to be a part of inner strength. But you register, you come in when you can. it's you know, set time, I think it's seven PM second Wednesday of the month, all remote. And we're we're kind of all there to speak about.
John McAleavey: We will do that, yes, yes.
Angela Smith: exactly the type of questions that you've been asking Marianne and I, right? What is inner strength? Have you found
Maryann Hobbie: .
John McAleavey: Sure.
Angela Smith: it? Have you lost it? Right? What are the things that have gotten in the way of finding it? And kind of d kind of drilling down on matters of the heart. And so we've had about four, three or four sessions, gatherings, and all we never know who's coming and
John McAleavey: Mm-hmm.
Angela Smith: we all kind of try to you know just share. You know, hey, I get it, I understand it, or yeah, I've I haven't never had to deal with that. That must be horrible, right? To have to deal with and just really sort of try to support each other and connect that way. So
Maryann Hobbie: Okay.
John McAleavey: Yes. I can attest to it. I I was asked you guys had sent me an email a while back, I guess it was maybe a month or two ago, and I was going through a rut. I heard Mary Ann say before she's hit rock bottom a few times. I was I was bouncing on rock bottom a couple of weeks back and you know, just to look at faces in these boxes here, but you know, we're not just boxes here, we're human beings and we all
Maryann Hobbie: Thank So,
John McAleavey: have a lot of the same problems and the same trials and tribulations that we're going through. And I was able to get a lot off my chest and I could see some other folks that were on there were nodding their head like, you know, yeah, I got that too, you know, John, I'm feeling all of that too. And not that it makes you feel better that someone else is going through what you're going through, but just to know that you're not alone in all of this is is somewhat comforting. And so what, Mary Ann, would you say are your hopes for the inner strength group gatherings?
Maryann Hobbie: Many that people find connection, number one, because when you're connected, you don't have to feel so alone. And it's not a solution. It's just a connection that gives power that lets you know, let you know that you're not alone. Like I said, and When I was able to do something like this before I moved down at Kessler, people would come in and so often your families are cheerleaders. They want you to succeed. They want to tell you it's okay. And you feel like, I don't want to even be here today, quite frankly. And
John McAleavey: Yeah.
Maryann Hobbie: if you can go to a place like our small space is and just say, you I really can't stand this stuff anymore because loss is ongoing. To me, life is just an onion that keeps peeling. And sometimes there's loss that you didn't even want to look at before, and you got to come terms with it. And that's not a bad thing. And it's not living in negativity, it's acknowledging it. And I would try to, I tried so long to hide my anger at God. I've tried to push all that stuff down. But when you're just sitting together in a group, you're connecting again, a power. And the nice part is that if it grows big enough, And one of those meetings, Angela can work with the caregivers, I can work with the SEIs, because we just want to work together, because this road of life is bumpy. And
John McAleavey: Yeah, yeah.
Maryann Hobbie: just trying to smooth it out a bit, not answers just to be together, which to me is the whole point of my life is love, right? And if it's about love, then I think that's, so those are my hopes for the Inner Strength Group, that people are brave enough to fill out that little thing on the line and show up and you're not getting your life taken away from you. And it's not being recorded and that's it. I just, it's only an hour. So I invite
John McAleavey: It's only an hour. Right?
Maryann Hobbie: anyone who listens or to tell a friend and just come, just come
John McAleavey: Yeah.
Maryann Hobbie: and hop in and like, let's, let's make each other stronger.
John McAleavey: Yeah, I felt
Angela Smith: Yes.
John McAleavey: a really good vibe and a good energy. It was it there was nothing down about it. There was not it it wasn't any like that. It was you know, I I I really felt better about myself when I was finished with all of that. And so that's a tribute to both of you and that the program that you put together. If you could tell us once again how can people join, I'll put the link in the bottom, but if you know the link off the top of your head, you could mention that here. And here's your platform to to speak it from
Angela Smith: Okay.
John McAleavey: the from the rafters.
Angela Smith: Probably the easiest way is to go to Kessler Foundation.org and do a search for inner strength. That's the easiest way at this point without having the link. And you know, because obviously John is gonna work his magic to edit all of this, so it might not come out right away. But if
John McAleavey: Mm-hmm.
Angela Smith: you're wanting to, you know, kind of register and join us, that would be the quickest way, because it's right on our website and the registration link is right there too.
John McAleavey: Yes. And last but not least, ladies, we have our final question in closing. And we've we've kind of touched on it a couple of different ways. I know, Angela, you have for the most part, but Marianne, I want to give you an opportunity. we talk about how people find their inner strength in different ways. Where have you over these last few years been able to find yours to to be as strong and proud and smiling as you are today?
Maryann Hobbie: Boy, there's days that I'm not strong and proud and smiling. My inner strength comes, I, for me, myself, I have a divine, I have a God that lives inside of me. I fired the old gods
John McAleavey: Ha ha ha.
Maryann Hobbie: and... the religions and no, that's not about it. It's about, it's a power of love that lives inside of me. And I found that inner strength when I gave up fighting so much and tried to surrender and accept this is what's going on right now. You might not like it, but accept it. And now that you can accept it, now what do I do? Then I can ask that question. And that's been a lot of big help for me. And then, cause I do work with other people on the road to finding peace and strength on their own. And so I'm used to the bumps, but that's what it is. If when I can surrender and say, give up, I'm not trying to run the universe anymore, I can't figure it out, help, then I can start to hear better. So that's where my inner strength comes from,
John McAleavey: Yeah.
Maryann Hobbie: from inside anyway.
John McAleavey: Sure. And how about Angela? Do you want to tie a bow on this for us? I know maybe from the a caregiver's perspective where you find your your inner strength.
Angela Smith: Yeah, again, it's listening and it's it's okay to not be okay. And once you kind of come to that, I think you can listen better. And that's what Marianne was just saying, right? To have that that and we're busy caregivers, right? We don't have a whole lot of time for ourselves. Right.
John McAleavey: Exactly.
Angela Smith: But if you could just grab five minutes, just sit, listen and and and hear what is coming through. It might be this day is horrible, right?
John McAleavey: Yeah.
Angela Smith: Whatever
Maryann Hobbie: Mm.
Angela Smith: it is, you're gonna have that moment of your your own space, five minutes, grab five minutes and and listen to things that you're hearing because most of the time the effort or the focus is going to be on the person that you're caring for, right? And
John McAleavey: Yeah.
Angela Smith: people aren't necessarily gonna ask you how you're doing. And I think that's really important that you ask yourself that question as a caregiver.
John McAleavey: Maybe crank up some Springsteen in the background too, huh?
Angela Smith: Well, whatever whatever it takes,
Maryann Hobbie: Hahaha!
Angela Smith: you know, yeah it for the in be be in nature, whatever you can do, even if it's just sitting in your your house with a cup of coffee, right?
John McAleavey: Yeah.
Angela Smith: And not having to feel like you gotta go somewhere. And to I love going to into nature music, things like that, which certainly are helpful, but to actually listen and have time to just listen and
Maryann Hobbie: .
Angela Smith: and focus a little bit on what you're hearing yourself say. Like that inner voice and what's it what's it telling you? Right.
Maryann Hobbie: Mm.
Angela Smith: Yeah, I hear I hear Springsteen telling me like things that match with me, right? Hey, I just this is this is my dude right here, right? But what's it all, how you're all putting it together in your own mind and having that that time. And
John McAleavey: Yeah. Yep.
Angela Smith: inner inner strength kind of gives people a little bit of a safe space. Yes, it's not just your own mind and your own thoughts, but I think it gives you a space to come and maybe think about those
Maryann Hobbie: you
Angela Smith: with others who are also
John McAleavey: Yes.
Angela Smith: thinking about those things at the same time.
John McAleavey: Well, Marianne Hobby and Angela Smith, thank you so much for joining me today to tell us about your inner strength program. Thanks for all you do for the community. And I am proud and honored to call you not only colleagues but good friends. And so I really appreciate you being here today.
Maryann Hobbie: Thank you so much. Thank you, Angela.
Angela Smith: Thank you so much, John. Thank you, Marianne. Yep.
John McAleavey: Before we go, I'd like to tell you about one of my favorite events of the year, Kessler Foundation's Fallfest, coming up on October 4, from noon until 3 p.m. at Kessler Campus in West Orange, New Jersey. Fallfest is a free community event that brings together people with disabilities, their families, caregivers, friends, and neighbors for an afternoon of fun connection and discovery. There will be plenty to enjoy, including games, activities, food, entertainment, and opportunities to connect with others in the disability community. But what makes Fallfest especially meaningful is that it brings together so many organizations that serve people with disabilities. Attendees can meet exhibitors and vendors from across New Jersey, learn about programs and services, discover adaptive products and techniques, and And connect with resources that can help people live, work, and thrive. It's also an opportunity to learn about the innovative rehabilitation research underway at Kessler Foundation and meet the scientists working to improve mobility, cognition, and quality of life for people with disabilities. Fallfest helps connect this important work with the community it serves. Whether you're looking for resources, interested in learning about research, Or simply searching for a fun and inclusive day out with family and friends, I hope you'll join us. To learn more or register, visit KesslerFoundation.org backslash fall dash fest. We look forward to seeing you on October fourth.
