Award-winning Canadian photographer Jay Perry dodged burning cars in Haiti after the country’s devastating 2010 earthquake, he’s had Haitian rebels point their guns in his direction and he’s driven across the country in a cramped van eating and drinking off four dollars a day. But watching his father slip away from cancer was harder than any of those ordeals. Jay tells us why, and he talks about his book, “My Dad Got Sick: Love and Insights From a Caregiver’s Unexpected Journey Through Cancer,” an emotional account of interrupting his skyrocketing career at age thirty-one to help his father battle terminal cancer. Jay shares the non-traditional medicine practices incorporated into his dad’s daily routine. He opens up about the anxiety of being in debt after leaving the workforce to care for his dad and explains why it was worth it. Jay also tells us about his mission trip to Haiti and how his photograph “Kettenie-Love” changed both his life and the life of the little girl in the photo, and about his project Friends With Hearts. Note: this episode originally aired June 28, 2018.
Explore Jay’s book: “My Dad Got Sick: Love and Insights From a Caregiver’s Unexpected Journey Through Cancer”
Jay’s photography: Jay Perry Photography
The story behind his award-winning photograph “Kettenie-Love”
More about the project Friends With Hearts
Music: “Melancholia” by Dlay | CC BY NC ND | Free Music Archive
JANA – At age 31, in the midst of running a business that was starting to take off, Jay Perry stopped working entirely and moved in with his parents to help care for and spend time with his father Darrell, who had been diagnosed with terminal cancer. Given nine months to live, Jay’s dad baffled doctors by surpassing that expiration date and living for several more months. Jay wrote about his experience in a book titled, “My Dad Got Sick: Love and Insights From a Caregiver’s Unexpected Journey Through Cancer.” In his book, Jay doesn’t sugarcoat anything, maybe because his work as a photographer has trained him to see and capture life in a truthful way. Jay began his career in 2009 as a nightlife photographer, rapidly expanding his portfolio to include artists such as Snoop Dogg, Usher and Gwen Stefani. While traveling to Haiti in 2010, during the aftermath of that country’s devastating earthquake, Jay shot a series of photos capturing the country resilience, in the process, producing the award-winning photo “Kettenie-Love,” which not only changed Jay’s life, but the life of the little girl he photographed. Jay Perry joins us today from Hamilton, Ontario, Canada, and I could not be happier to have you on the show. Jay, welcome to The Agewyz Podcast.
JAY – Thank you. Thank you for having me, Jana. I appreciate it.
JANA – You started your book, by painting a picture of a typically warm Canadian Ukrainian Christmas Eve in 2012 with, you wrote, “the scent of homemade perogies and family gathered round.” And then you abruptly switch gears and get real, and you just start in a whole different direction with this book. Talk about why, and what triggered the writing of this book.
JAY – Well, talking about the Christmas, that’s the first day my dad had a symptom, any sort of sign that there was something wrong. When I started writing the book, I wrote pages and pages, you know, putting the reader in the room with us, explaining every detail, the smells, everything. And it wasn’t til six months after, I went through a little bout of depression, I kind of looked back and thought, you know, that’s such a waste of space, a waste of words. The person who I intend this book for doesn’t really care, doesn’t want to be in that room. They want the information to come to them as quick as possible, let’s say. So that’s when I kind of realized, let’s change that up, let’s do a whole rewrite, and figure out what best content I can put in this book. So that’s kind of why I started the book that way. Because it was, again, the day of my dad’s first symptom and, you know, what led to the next two and a half years of his diagnosis.
JANA – And that symptom that you were referring to was the coughing attack that he had.
JAY – Yeah, he was sitting there, and it was just after dinner, and everyone was having a few drinks, and he started – at first I thought he was kind of laughing, and it turned into a cough that it just wasn’t stopping. And, you know, after two seconds, three seconds, four seconds, he couldn’t stop. And his face started going, you know, a shade of blue, which was very scary. And maybe it was just like, okay, like, he’s trying to catch his breath now. And I was actually close to calling 911. It was that scary. And then he finally caught his breath back and, and, you know, continued with the night.
JAY – A few days later, he went to the emergency at the hospital, and he was actually diagnosed with pneumonia. And the doctors there gave him some antibiotics to take. And maybe two days after that visit, he got a call from the hospital and said, you know, our, we’ve looked at the X rays again, and we see a spot there that we’re concerned about. And we’d love for you to come in. So from going from being scared from his face turn blue, to being okay, this is just pneumonia, let’s take some antibiotics and all is well, to then, you know, back to that gut-wrenching feeling of, what is this?
JANA – And then he was diagnosed in March of 2013?
JAY – Well, it was – yeah, it was kind of all led up to there. There was, you know, tests and tests and, okay we see a spot and then biopsy. And then, okay, it is something, then more tests to see if it had spread. So it wasn’t until March 5th of 2013, where the full diagnosis of everything kind of came about. And also the news of: this is incurable.
JANA – Uh huh. But in your mind, you thought he could beat it. I mean, you write about moving in with your parents to help your dad “beat this cancer,” you wrote.
JAY – I just have a mindset of winning at all costs, kind of thing. I thought he could beat it. I mean, you do Google searches and you hear how severe stage four is and kind of like, there’s no hope. But then you hear these stories of, we beat it. We don’t know what happened. We did this, this this, and we’re cancer-free now. So there’s a mix, a mix of stories going around, you know, the Internet and research that I was – I don’t know, I guess I was a little confident that this was just a little road block, and he was going to beat it and all is well. But then doctors, you know, kind of brought that news on to us that you know, you’ve got nine months to live. And that was kind of when I said okay, well, I’m going to do my best to help the man who raised me, extend those nine months as far as we can. And I’m also going to spend as much time as I can with that person. And it was – to me, it was an easy decision. There was no question about it.
JANA – Yeah, you’re right about that being an easy decision of – and in the book, you refer repeatedly to your dad as your hero. What made him so special?
JAY – You know, there was a lot of different things that he did for me growing up. One, just always being there for me as a dad, right? And he didn’t have to raise me the way he did, and show the love for me that he did. But you know, he did unconditionally. I can think of a specific story. When I was younger, growing up in Canada, as every Canadian boy does, I – you play hockey. And so growing up, I started getting better and better as I was, you know, getting older and around age 10 is when some of the coaches kind of said to me, okay, you’ve got to get out of this house league, you’ve got to go play rep, and…
JANA – Rep hockey?
JAY – So rep hockey is kind of like a travel hockey. We call it like a Triple A, junior league. I don’t know how to describe it other than just –
JANA – it’s not neighborhood hockey anymore.
JAY – Correct. You got too good for the, for the city hockey you were playing, so you go on to play with the better kids. But it was tough because that was more money and more time, because now you’re going from being on the ice to two nights a week to six to seven nights a week. But I really wanted to do it. Now what was holding us back is my dad was an avid curler. That’s another Canadian thing which I think is getting bigger in the States now. So I can remember where I was sitting the day of, and my parents coming to me and said, Dad’s going to quit curling so you can play travel hockey. And I think that was a no brainer for him too, kind of saying like, you know, my son really wants to do this. I’m going to give up my hobby for him. So that was one of the things, I mean, I grew up playing sports, he would always leave work early to kind of take me to different games. So those are just a few examples on how amazing of a person he was. Quiet, shy guy. But no real enemies. You know, he never had time to argue with people because he just wanted to get to know you and love you. He was a great guy.
JANA – Uh huh. You know, one of the things I like about this book is that it feels really supportive in nature, rather than sort of just advice-oriented. I mean, I like that it doesn’t pull any punches, and it moves right along. But you talk directly to the reader. And so I’m wondering why it was important for you to write this, and to take that particular approach.
JAY – I wanted to write it for a few reasons. One, being I believe that now this takes my dad from just another cancer statistic, to hopefully a healer in someone’s life. So that his fight now was worth more, you know, than just getting – I feel like a lot of people get a diagnosis, they listen to the doctor’s diagnosis and say you have six months, and they’re gone in six months and that’s it. I wanted his story, his journey, his fight, to provide hope to others. Although this book is for a caregiver, it can provide hope to a lot of different people.
JAY – Now, one of the reasons why I wrote it as well is, while I was going on this journey with my dad, I was sharing a lot of it via social media. And a lot of people were really connecting with how open I was with it. And it was tough, being this vulnerable was very tough for me. But I realized that if it could help somebody in their situation, then you know, I’m definitely okay with that. And while this was taking place, a lot of friends would reach out to me and say, hey, my mom was just diagnosed with whatever, you know, do you have any advice, you have any words, and I would 100% always reach out to them. Go out, take them out for coffee and just tell them anything I knew. So after this happened a few times, I thought, well, this is only a reach I have via, say a Facebook page. But there’s a lot of other people out there that probably need this that I don’t even know about. And these words, these stories if I kept them in, I think would be terrible to those people who might need it.
JANA – Mm-hmm. You convinced your dad, who was very skeptical about the idea, to see a naturopath. What is naturopathy?
JAY – So it’s – I don’t know how big it is in the States, but it’s becoming a bigger practice in Canada. And I think it’s controversial because when people think of naturopathic medicine, they think of being treated with leaves, right? Or magic potion, and not specific antibiotics or chemicals, let’s say. A more natural way of healing your body. And to me, it’s understanding that the body is an amazing thing and it’s made to heal itself. And then we throw these crazy antibiotics in it. It could mess things up.
JAY – Now, I’m not one to say never taken antibiotics. I think there’s a time and place for everything. And we wanted to explore naturopathic medicine because of the research we had done. Not to use it as a cure for cancer, but to use it as a aid in side effects and symptoms that were brought on from cancer. So for instance, appetite – he lost his appetite and we weren’t sure what to do. So we went to a naturopath and he put us on some supplements that helped bring his energy back, helped bring his appetite back and little things. And I talked about it in the book, how during his radiation treatments and chemotherapy treatments, he never really had many side effects. And that was one thing he was scared of. And I remember driving him up to his first chemo treatment and I asked him if he was scared. And he said he was. And that was the first time I’d ever heard my dad say he was scared. It’s tough for me to even talk about that.
JANA – Yeah, sure.
JAY – And I think he was scared because, A, the nature of what was happening, but also what, you know, media and the world tell us what’s supposed to happen after your treatment. You know, you’re going to be hugging the toilet, vomiting all night. You’re going to be bedridden for weeks. And he wasn’t. And I’m not saying that if someone’s listening, taking care of someone that their loved one, maybe that happens to them. But I really, really put an emphasis on the idea that naturopathic medicine helped alleviate a lot of those symptoms. And he was very skeptical because it’s getting brought up as a hippie, plant-loving potion doctor, and that’s what people think of it as. And it’s unfortunate because of how valuable it was to us.
JANA – Would you tell us about your dad getting his driver’s license reinstated after it was taken away? That was really touching.
JAY – Yeah, so when this all happened, he was diagnosed in March of 2013, the lung cancer had spread to his brain. So right away, the doctor took away his license, because he was at risk for seizures. And that was tough for him. Because he loved driving, loved his car, loved the independence it brought him. But you know, we accepted it. And he became the passenger in my vehicle and, you know, I drove him everywhere. So because the doctors told us that, we were expecting him to continually have seizures. And after a year and no seizures, we started to question why he doesn’t have his license.
JAY – And we talked to his oncologist. And we said, Can my dad get his license back? What has to happen? And she’s flat out told us, I don’t know. I don’t know what to tell you, because patients with his condition never live this long for the possibility of getting their license back. And that was interesting to hear, because she didn’t have an answer for us qnd that kind of sucked. But I didn’t look at it that way. I looked at it as, like, we are beating so many odds right here. It’s unbelievable. And I’m so proud of my dad for continuing to do this. So she didn’t have an answer.
JAY – So we took it in our own hands, and I called our transportation ministry. Made calls after calls, and down the line they said you’ve got to get this test done and this test. So we went to some brain doctors, they ran tests on my dad’s brain, went to other doctors to see if he was fit to drive, and after year and months, he ended up getting his license back. And doctors were just baffled and in awe that that was happening. And that he could do that. And he ended up driving for a few months before it got taken away again, when things got really bad. But for those few months, he was in his glory. He didn’t have to rely on anyone to get him to wherever you want to go. Although we didn’t mind, he just wanted that independence back. And he had it for a few months. And he was so happy.
JANA – I can imagine.
JAY – So I mentioned that story in the book because, you know, maybe someone’s loved one has their license taken away, or more so just to provide some hope to people that, you know, don’t always 100% listen to what people say are going to happen or might happen because things can change if someone works hard enough to do it.
JANA – And you sort of make this point in the book that the book is not intended to debate the healthcare system.
JAY – Right.
JANA – But you did have some frustrations that came up in your research regarding physician training. What sort of frustrations did you have generally, with healthcare?
JAY – Well, I think the one was that there’s not a lot of emphasis put on nutrition. I think that food can be used as a medicine. And I was talking about in the book, you know, that one doctor was talking about how much nutritional training they had in medical school, which was barely anything. And it’s unfortunate that way, because I think we can either heal ourselves with food or kill ourselves with food. And there’s not enough emphasis put on that. And again, I don’t talk negatively about his doctors at all because they were so amazing to us. But they were just going off of what they knew, right? Averages, statistics and what they learned in school. So yeah, again, the frustration was the nutritional one. Little things that we found out, the doctors never really told us about or even brought up the idea of – some came from the naturopath, like emphasis on exercise, none of the oncologists kind of said that.
JANA – Really?
JAY – Yeah, I mean, none of my dad’s primary oncologists ever mentioned the idea of any sort of exercise. And it wasn’t until our naturopath said or we asked, you know, can he – because my dad loved walking, he was a big walker. And we were worried, you know, he would, you know, get his heart rate up, and that was a problem. But he said, No, like, it’s very important to exercise. So here’s my dad, stage four lung cancer, cancer in his brain, who knows where else, and he’s on a treadmill every morning for 45 minutes. And that was pretty inspiring to me.
JANA – Yeah. You make this really great point that your dad was sick on paper only, and not in the mind. I think this is connected to his living longer. Now, a year plus a day after his diagnosis, you celebrated that he had survived that long. So I wonder if you could talk about being sick on paper versus not in the mind and surviving and celebrating that day?
JAY – Yeah, I think the mind has a lot to do with healing. A healthy mind, kind of healthy body, kind of relation. And we did our best to not always remind him of his diagnosis, and that he was sick. So he was, yeah, he was given nine months to a year to live on March 5th 2013. And I was so looking forward to March 6th 2014, because that means he beat that nine months into a year diagnosis. And, you know, sure enough, that day came around, and we threw him a little party – he didn’t even realize it, he had no idea – threw him a little party just to celebrate and say thank you for fighting, and coming this far and beating the odds, and still going strong. And it’s funny, he never really, I don’t want to say he didn’t realize he was sick, but he never really let it bother him that much.
JAY – To the point where his family doctor called me one day after one of his appointments privately and said, Jay, do you realize how sick your father is? I said, I do. And he said, because he doesn’t see it. He doesn’t think it he’s got a very positive attitude. I don’t get it. But I just wanted to make sure the family is aware of what’s going on. And I said to him, we 100% are, but the fact that he doesn’t want to believe it, to me is incredible. How he can do that, I have no idea. But I do 100% believe is that’s what helped him triple his diagnosis. And it’s a team effort, right? I think if you’re surrounded by individuals who are constantly putting you in a situation where you might die tomorrow, and constantly reminding you of that, I think that’s so terrible for the mind. So as much as I was his caregiver, it was a family effort. And it was a family effort to show him love.
JANA – Mm-hmm. You have a brother, right?
JAY – I do. I have one brother, and he was a big part as well, you know, just coming over and just hanging out with my dad. And just treating him like a human being and like nothing was different.
JANA – That day that you celebrated your dad living beyond the projected day was also the day you first went public with your father’s disease.
JAY – Right. Right.
JANA – I wonder if you could talk about why you waited so long.
JAY – I wish I knew the specific answer for that. Maybe I was just scared. Other than that, I’m not too sure why I waited. Maybe I just wanted to wait to show people that, you know, something was possible. Or I didn’t want people to think anything was wrong, because I didn’t want anyone to treat us differently. Now this was just going public to friends. Of course, close family and close friends knew about it. But this was going beyond. I kind of regret waiting that long because of the posts that would come after, how much value I’ve seen that they had in other people’s lives as well.
JAY – At the same time, that full year, there was really nothing different in our lives. So there wasn’t a ton to write about, other than going to appointments and chemotherapies. There wasn’t a ton to write about, because life hadn’t changed that much. He wasn’t sick in our minds, right? He started out his treatments right away with brain radiation. He got to a point where his brain doctor said, We don’t even need to see him anymore, everything’s gotten so small. And then he started chemotherapy. But thankfully, he fell into the small, small percentage where his chemotherapy could just be done by a pill. So he was at home taking a pill every day at 5 o’clock until months, months later, where it wasn’t working. But yeah, there wasn’t too much to write about, I guess. Maybe that’s why I wasn’t really sharing it up until that year.
JANA – Right. And when we say going public, you really mean social media, right?
JAY – Correct. Yeah. Social media, reaching out to, you know – if people are wondering. I hadn’t been posting much in general at all. And I just wanted to show people, you know, this is what’s happening. This is going to be my next, however long.
JANA – Right. So there came a turning point after your nephew’s hockey game, and your dad began speaking gibberish. Tell us about that, and how you coped.
JAY – Umm… things up to that weren’t too great. But yeah, one day after hockey, he was sitting there and just started mumbling something and repeatedly mumbling it. We thought he was tired. We weren’t sure. So we brought him home and took him out of the car, and he started mumbling again, just not making any sense. So we brought him right to the hospital and thought, you know, he was having a stroke. And yet, the doctors said it was- he was weaning off a steroid drug he was taking for swelling in his brain and it wasn’t working. He had to go back on it. And it was tough, because it was almost then when you realized, you know how serious it was getting?
JAY – Like I said, it was it was a really tough day for us. And that was kind of a big turning point, when we realized where it was going, and how much time was left – we had no idea. But he was scared too because once he got back on the steroid, he was almost like immediately back to normal. And he even told us that he realized he was talking gibberish, and couldn’t figure out how to speak normally. So as scared and upset as I was, I can’t imagine what was going through his head.
JANA – And you had the experience of having to bathe and shave your dad. For guys listening to this, I wonder if you can speak to that, because this was tough. And I wondered how you managed it. It’s not something we really talk about very much. But a lot of guys have to do it.
JAY – Yeah. And, again, going back to the easy decision, it was an easy decision for me. Because it was just something that had to be done. And, you know, my dad bathed me and changed my diaper when I was young, so it was kind of, you know, coming full circle. And how it happened is one day he was in the shower, and I heard the water running in an odd way that shouldn’t be. And after about 10, 15 seconds the water wasn’t stopping and I went upstairs and opened the door, and he was lying in the tub. He had fallen backwards in the shower, and he broke a rib. But it could have been much, much worse.
JAY – So that’s when we realized, okay, he needs help with that. So we installed some handles in the shower. And he was kind of using that for a bit, but then it got worse, and he needed to help. So we got him a bath chair and put it in the tub qnd, yeah, we ended up having to shower, shower, my dad and ended up having to shave him. And yes, it was an easy decision. But in my mind, it was tough because I never thought I would have to be doing this. I think nobody thinks that. You think that your parents are, you know, going to go well into their 90s and you’re not going to bathe them because the nursing home is, right? Or wherever that is. And I don’t know if it’s just me, but I was never embarrassed to do it, or shy to do it.
JAY – It was, again, part of the journey and one of the steps that I gladly took on. And it was the first time I had ever shaved someone besides me. So I was a little scared that I was going to cut him. But my dad did not like facial hair. And when I was shaving him he was in the hospice at that time. So he was, he was almost bedridden, or he was bedridden. But they got him in a wheelchair and brought him into the washroom, and he was almost pretty much sleeping while it was happening. But just – I knew he didn’t want facial hair, so I made sure to do it and didn’t cut him, which was exciting. But yeah, it’s something nobody should have to do. But if you’re put in that position, I hope it’s an easy answer for someone to do.
JANA – One of the things that you wrote that was so interesting to me was that you had the idea of filming your dad when he was alive for your future wedding. But you chose not to do this or take photos, even though you’re a photographer.
JAY – Yeah.
JANA – Why?
JAY – Well, going back to the idea of, you know, not reminding them that they’re sick, like I talk about in the book, you know, I would love to have filmed my dad speaking to, you know, my future wife in some sort of video way. But the whole idea of that video is knowing he’s not going to be there for it. And I think that puts another reminder in his head that I’m sick. Again, it goes back to making them feel like a normal human being. I wouldn’t have done that if he wasn’t sick. So why should I do it if he is, right? And just healing his mind that way. So that’s kind of why I didn’t want to do it. And like you said, I’m a photographer. I have all the equipment, the knowledge, the skill to make this happen, and I chose not to. There’s photos of his journey through just my iPhone. And to me, that’s good enough.
JANA – Uh-huh. I love the photo of you having a beer with your dad. Non-alcoholic, right?
JAY – Yeah, so the story with that one is, that was in the hospice, and that was at a time where he wasn’t allowed to have alcohol at all anymore. And he actually – he kind of quit alcohol through the whole journey. But to me, it’s more the habit and the ritual of a father having a beer with his son. I think that there’s something important with that. So we had a non-alcoholic beer together. He didn’t know. He had no idea. And it was just a moment that we got to share together. It made him feel normal again, and I think that was fun fun for me too. And he enjoyed a glass of wine at dinner all the time. But he wasn’t allowed to have wine anymore. So we got boxed wine, we cut it open, we cut open the bag, took that out, filled it with non-alcoholic wine, taped it all up, sealed the box. And so in his fridge, he, you know, had a box of wine with the spout. Never knew it was non-alcoholic, we don’t think.
JANA – What a great idea.
JAY – And it just allowed him to feel like a human being again and not, you know, someone with a terminal diagnosis.
JANA – How old was he when he was diagnosed?
JAY – 62? I’m trying to think here… he was 64 when he passed. 61, 62. Around there.
JANA – Oh, that’s young. Gosh.
JAY – Yeah, it’s – you know, it’s very, very young. He passed at 64 years old. But I like to tell people that I got 32 years with my dad, which is incredible. And some people don’t get that. So I was very fortunate to have that. We have a friend who passed a few months ago, and he has an eight-year-old son. So I look at it like that. How does that kid grow up without a father in his life? So I was very fortunate that I had 32 years with my dad. 32 amazing years as well.
JANA – Yeah. Sounds like it. So after two years of a relatively normal life in the house, the day came when you were told nothing more could be done. And you had to deliver that news to your mom. Tell us more about your mom and how she coped. And how was she doing now?
JAY – Yeah, that wasn’t a fun day.
JANA – No doubt.
JAY – I remember going back to March 5th of 2013 when we are given a nine-month diagnosis, and my mom was in the room and she just went off by herself and just needed some time alone. I took my dad, and I have no idea what was going on in her head. And then, you know, fast forward to two years later, getting that news and nothing can be done. Having to share that with my mom. It was, it was scary. After every appointment we’d call her because she’d be waiting for the update. And it was always, all is good, nothing’s changed, very happy. And then this one, we called and said, we’ll talk to you when we get home. And she knew something was wrong.
JAY – It’s tough, because I think it was something we expected, for sure. We just didn’t know when it was going to come. I don’t know how she dealt with it that night. I’m not too sure. So to now, I think she’s doing a lot better. I think she’s a little, still a little sad, a little lonely at times, which is a given. But I think what she’s going to do is, she really wants to start volunteering at the hospice where my dad was, as a way to give back to a place that was so amazing to my dad, so amazing to my family. And I guess continue to grieve, continue to figure out what to do. She misses – they would have a vacation, every July they had a timeshare down in the Caribbean. And now she’s, you know, doing that alone sometimes, or if she can’t find a friend or if we can’t go. So it’s, it’s gotta be so tough for her. Something that I don’t understand for sure.
JANA – Yeah. You make a point in the book, too, about everybody kind of grieving at their own pace. And I thought it also it was interesting in the book that after your dad’s death, you swore off the color red. You wrote, that you were forever haunted by the number 35.
JAY – Yep.
JANA – Tell us more about the aftereffects of your dad’s death.
JAY – Yeah, there was a bunch of things I had put blame on for no reason, why this was all happening. The number 35 kept popping up in such weird places that were related to my dad’s death, my grandfather’s death 35 days later. So talking about, like, those ideas how I’m dealing with it, it’s tough. And it’s a day-by-day thing. And I would say I’m in a way better place than I am today, than I was three years ago when he passed, by far. Actually a family member who read the book, called me right after and was kind of concerned for my well-being after reading some of the stuff in the book. And I said to him, I appreciate it, but a lot of those words were written two and a half years ago, a year ago, while I was healing, while I was grieving. I’m doing a lot better now.
JAY – But I also think that if I were to start the book today, it would come out completely different. And not as personal as it is today, because I did start writing it right away, which helped me be vulnerable, I guess. And I thought the book was going to take a month to write. The stories are already written, I need to get pen to paper. But I didn’t realize how hard it was going to be to bring up those memories again, and deal with that.
JANA – I can imagine. Jay, your relationship with your dad was so close to begin with. How do you think it changed during the time that he was going through this, and the two of you were going through this?
JAY – I think we got closer, for sure. You know, we kind of became best friends. We were always together, because he was continually going to appointments. I was taking there, he’d come on little road trips with me. So yeah, it, it definitely – it sucks to say, but his illness brought us closer. And that’s unfortunate. But that’s not saying we weren’t close already. We were very close. But the time we spent together in those two and half years are, you know, there were some incredible times. There was times of frustration, as well, me getting frustrated at him, him getting frustrated at me. But I think that was a given, that was going to happen.
JANA – And I like that you’re really open about that. For people who are listening, and pardon me for interrupting you, but this is not a book where it’s, as I said in the opening, it’s not sugar-coated. It’s not one of these sort of touchy-feely type books. It’s very real. And I love that about the book. So many people, when they write about death, or end of life issues, they try really, really hard to make it okay for everyone, and you didn’t do that. So good for you.
JAY – Mm-hmm. There was a lot of times where, of frustration, where he – I mean, he was taking so many supplements a day, at different times, every 15 minutes, every half hour before bed, this and that. I can’t imagine how he was doing it every day. And there was one time where he had run out of a supplement. And one of the doctors, or the naturopath said, It’s coming in in five days. To me, that wasn’t a good enough answer. We needed it now. We needed it tomorrow. So we said, I said to my dad, I can go drive two hours to go grab it. I’m going to do it.
JAY – And he said, No, no, no, you’re not doing that. You’re not doing that for me. And it was kind of back and forth frustration. And I said to him, I remember saying a few times to him, and I kind of regret it a little bit, you know, Have you given up? And then he looked at me and, you know, No. And later on I would regret saying that. But at the same time, I mean this was all new for me. I had no idea how to motivate somebody to keep going like this. Or coach somebody to keep doing it. So I – there were definitely failures in the whole process. For sure there was. There’s a lot of learning lessons for both of us. Would I change some things? I don’t know. It’s tough to say. But like you said, it’s very real, very honest, very open. Embarrassingly, sometimes, some of the things I talked about, maybe. But I feel like there’s a lot of people going through the same exact situations, and if it makes them feel, you know, a bit of comfort that they’re not alone, then let them know my personal life, I guess.
JANA – For people who might know someone who is dealing with cancer, but doesn’t really know how to show support, what can you say to them? And maybe, what do you wish people would have done more of?
JAY – Well, I think if you have a friend or someone, and their loved one’s going through it, I think the biggest thing you can give someone is your time. Granted, you know, we – the majority of us aren’t doctors, we have no idea, the slightest idea how to cure cancer, how to treat cancer, but what we can do is spend time with them. And the biggest thing is to listen to them and allow them to cry. I think that we now live in a world where it’s taboo or seen terrible if you cry about something, where I think it’s the complete opposite. I think you want to be around those people that allow you to be in a position to express your emotions and be sad, because there’s a lot of sadness that comes with cancer.
JAY – So yeah, if you know somebody just reach out, don’t be afraid to ask how they’re doing. Don’t be afraid to ask how their loved one’s doing. Because I think a lot of people are afraid to do that. I think a lot of my friends were afraid to ask me how it was going because it would stir up some sort of emotions that I didn’t want to deal with. But it was the complete opposite. I loved when people reached out, you know, asked about my dad, asked about the situation, how he was doing. I thought it was great. So that,, I would just say to reach out to people and continually following up with them. And they’ll really appreciate that.
JANA – Well, I don’t know if you have the book handy. If you’d like to read something from the book, I thought it was really fascinating that having gone to Haiti and experienced the destruction of the earthquake there, you contrasted that with taking care of your dad, and being unprepared for that. Maybe you can just read that paragraph.
JAY [reading from his book] – I’ve walked through the ravaged streets of Haiti, climbing over fallen trees, dodging burning cars, all while Haitian rebels point their guns in my direction, yelling at me in a language I don’t understand, which translated to, “put your camera way, or we’ll shoot you.” I’ve driven cross country with four other people living in a cramped van, eating and drinking off $4 a day. Yet the hardest thing I’ve ever had to do is watch the two mentors in my life, the two men who taught me how to be a man, slip away to the next chapter of their lives right in front of me. I write this at the bedside of my dad just as I finished helping him with his breakfast. It will probably be the only hour I see him awake today. He asked me what I did the previous night. Who won the curling event? And before he takes a bite, he needs to know that I already ate breakfast and offers a bite of his doughnut in case I still might be hungry. We then watch “The Price Is Right” and make jokes about how awkward Drew Carey is, until his eyes become heavy and he falls back to sleep. The room is warm, painted a grey shade, spotless and smells like some sort of lavender the staff used to sanitize everything. My dad is comfortable. And I look back on the hour I spent with him today and smile. The “I feel embarrassed for him” comment about Drew Carey and the laugh we had will forever be etched in my mind. And that’s something nobody can take away from me.
JANA – That was Jay Perry reading from his book, “My Dad Got Sick: Love and Insights From a Caregiver’s Unexpected Journey Through Cancer.” Jay, the photo that you took in Haiti, let’s switch gears because I’d love for folks to hear about this part of your life. The photo that you took in Haiti, of that little girl, Kettenie-Love, really changed your life. Could you tell us about how that came about, and how it changed your life? And hers.
JAY – For sure. So back in 2010, I was, you know, this up and coming photographer. And by up and coming I mean I owned a camera and thought I could be a photographer. I was getting better at my craft. But still, not a lot of work was coming in. I took a mission trip to Haiti. And one of the first days there we were in the – an area called Happiness Alley, which, ironically, is the poorest area in Haiti. And this little girl, she just wouldn’t leave my side. And she was kind of tugging at my pants, and just – and I just looked down and I snapped a photo of her while she was looking up at me. Thought nothing of it at all. Got home and started editing the photos and thought, This is a really good image. And there’s something interesting here. So I put it out online. And it got picked up by a lot of publications. It won contests, different magazines featured it. And ever since I snapped that photo, I’ve been able to work ful-time as a photographer, ’cause that’s what really, really helped kind of get my name out there. So I owe a lot to her, and to that image.
JANA – And you returned to Haiti, to give her something.
JAY – I did. I did. So two years later, I returned with the same group. And I wanted to say thank you to her because she, you know, she had no idea how much she changed my life in those two years, going from a guy who was, you know, not getting any work to so much work coming in. And we went on a mission to find her. I had brought a canvas image of the print that I made for her and her family. And we went and found her after a little bit of a journey and gave her the image.
JAY – And I asked her mom, if I could pay for her schooling, to send her to school, because – just a small way to say thank you. And it was it was only $25 a month for me. But what that did was it got her out of the school where she was walking a few hours to get to, to now down the street. You know, I got all her books, her uniform and breakfast every morning. It was again, just a word to say thank, you know, not looking for any sort of pat on the back or recognition for what I did. It was just she changed my life. So I wanted to do something small for her.
JANA – The other thing I would love for you to share is about your Friends With Hearts project. That sounds really cool.
JAY – Yeah. So, Friends With Hearts is an organization that aims to sponsor kids at Christmas, and give them the Christmas that, you know, they deserve. And how it came about is when I got back from Haiti, someone said to me, why are you helping people out there when you’re doing nothing in your hometown? I kind of brushed it off for a little bit, but then it kind of got to me. And one day I found a photo of myself from Christmas holding a toy that my parents hae bought me and I somehow could remember that exact day, and that situation, how happy I was. And right then I thought, you know, I don’t want any child to not have this experience.
JAY – So what I did was, I reached out on Twitter, and said, Hey, does anyone else want to come in and sponsor a family with me in Hamilton? I found out through an organization it was going to be $250 to sponsor a family. So nine other friends, I was trying to see if they’ll give me $25. And it was just like all: I’m in, I’m in, I’m in – so many people. So the goal that year was $250. And one family, we ended up raising about $1,400 and sponsoring two families. So it was kind of there where I realized, okay, there’s something interesting here. Because the first year it wasn’t called Friends With Hearts, it was just myself doing it with people. And the name came easy to me. It was friends with big hearts, wanting to help out. So that’s kind of, year two, it was called that.
JAY – And then we started a wrapping event, where people come together to wrap all the gifts we buy. And I want to bring that back from Haiti as well. Because in Haiti, they are known to be very financially poor, but they’re insanely socially rich. And it’s the opposite out here in North America. We have money, but we won’t say Hi to our neighbor. And I’m completely guilty of that for sure. So I want to bring that idea back together, and do it as friends, do it as a team, do as a community. And yeah, after year three, we ended up spreading it to different cities across Canada. A few years ago, we started our first chapter in New York City. So we got to the States. And as of last year, going from raising $1,400 in 2011, we’re now at well over $110,000 raised, I believe. Yeah, I think last year we did $40,000, just in Hamilton alone.
JANA – That’s incredible. And this is all for Christmas gifts, eh?
JAY – Yeah, this is all for Christmas gifts for kids. And I believe that every child deserves at least one – or one toy under the tree. But what we do also is we take care of the necessities. And sometimes we get wish lists from organizations that we’re partnered with, and a five-year-old asks for winter boots or a winter coat. And if you know your listeners know anything about Canada, and some of those stereotypes are true, it’s cold up here. So to think that a five-year-old is going to go without winter boots is, it’s heartbreaking.
JAY – So not only do we buy them toys, but we buy them winter coats, winter boots, school supplies, the necessities of life, and we also sometimes take care of the parents too. And sometimes all they want is a gift card for the movies, so they can take their kids to a movie. A luxury that I grew up with that – you want to go to the movies? Well, you just go to the movies, and you pay whatever it is, that – some families can’t afford that. And it’s unfortunate. So wit Friends With Hearts, we want to do our best to help those families in need. And so far it’s been, it’s been a lot of fun what we’ve been able to do with it.
JANA – One thing I didn’t ask you about which maybe you can address – because you made a pretty big point about this and it’s something that people talk about a lot – is the last income that you went through. I mean, you wrote really bluntly about being $90,000 in debt. You wrote, “being in debt really, really sucks.”
JAY – Yeah.
JANA – Which we all know. How did you cope with – just the anxiety of being in debt?
JAY – Well… still coping, still working on it. So taking, you know, two and a half years off of working was tough, very tough. And then, you know, losing that money that way, but also jumping back into the photography world two and a half years later, all my gear was outdated. My computer was outdated. So having to kind of almost start over and get back into it. And I’m still trying to climb out of that. And, you know, there are some days filled with financial anxiety.
JAY – But what always keeps me grounded, is thinking, if things were different, if I looked at my bank account, and it was 90,000, plus versus minus, would I be happy? Because then that would come with not having the memories I did with my dad over those three and a half years. And that’s what kind of instantly changes it is, you know, this is worth it, because I have lots and lots of time to make money. And there was a time limit on how much memories I could make with my dad. So that’s what keeps things the anxiety to a minimum, and almost to a none. It’s that I know I made the right choice, because I know a lot of rich, unhappy individuals. We all know them, right? That they have lots of money, but they’re very unhappy. And yeah, it’s very tough. And I’m still climbing out of that debt, and pushing and pushing and pushing. But I know I made the right choice. And that’s what keeps me here, keeps me going.
JANA – Well, before we go I want to give you the opportunity to offer any last thoughts.
JAY – I think that if, again, if you’re going through something like this, I feel for you. I feel your pain, I know how much it sucks. But there can be some amazing moments. And there can be some incredible times, if you take the time to spend with them. Don’t treat them as someone with a terminal illness, don’t treat them as someone with, you know, nothing to give, because I think there’s a lot to give if you look for it. And if you also return your love to them. The book, the subtitle I have “love” in bold letters because ultimately I think that is the best medicine, beyond any sort of anti biotic, beyond any sort of supplement. I think there’s nothing that love can’t cure, depending on your definition of cure. I mean, my dad’s not here right now, but I think love did wonders for him. And I think that we all have the ability to offer that. It’s free, which is awesome. And I think there’s not enough of it going around in the world. And there’s anything I can leave with his time and love. Spend your time with them and love your time with them.
JANA – We’ve been speaking with Jay Perry, author of the book, “My Dad Got Sick: Love and Insights From a Caregiver’s Unexpected Journey Through Cancer.” We’ll have a link on the Agewyz website to Jay’s book, plus a link to his personal website where you can explore Jay’s photography and learn more about his project Friends With Hearts. Jay, thank you so much for being on the show and for writing this book, and for being so honest and open with your thoughts. It’s rare, and I really appreciate it. And I appreciate you. So thank you.
JAY – Jana, thank you so much for having me on. It’s crazy to think that I’m on a podcast right now, that I wrote this book and someone in a different country is helping me spread the word. So I appreciate that, and I appreciate what you’re doing. So thank you very much.