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Showing posts with label schizophrenia. Show all posts
Showing posts with label schizophrenia. Show all posts

Thirty Years Ago Today

My mom with infant m

Thirty years ago my mom died. It’s mind-boggling to think about that. It’s mind-boggling to think that I’ve now lived far more of my life WITHOUT her then I have with her.

As some reading this will already know, my mom struggled with schizophrenia for most of her life. I suspect that she actually had early onset schizophrenia. And by “early onset,” I mean most likely in her teens. Am I sure? Nope, far from it. One of the tricks with mental illness is that it’s very hard to know when it starts. To put it another way, there’s a chance — probably a pretty good chance — that the mom I knew was never NOT struggling with schizophrenia. All of my memories of her are tinted with that disease, especially because she died so young (she was only 48 years old).

Since I don’t want to get maudlin about this (you don’t wanna read that and I sure as hell don’t want to write it), I thought I’d take a different angle on it this time. When my mom died, she was on welfare, struggling with intense poverty. There was no life insurance policy. No inheritance. No nothing. If an uncle of mine hadn’t stepped in, she would have had a pauper’s funeral1, Canadian-style. Since she didn’t have any assets, there wasn’t much “stuff” to inherit. I did, however, manage to take some things that were important to me. Some photos and other keepsakes. And her notes. She wrote a LOT of notes.

I think, but I’m not sure, that these notes were part of her therapy. I’ve never actually managed to sit down and read them all, mainly because they are actually very difficult to read. Part of that difficulty is emotional; these are written, after all, by someone I loved, someone I miss to this day, and someone who had a very unfair life. It’s MORE than that, though. They are really “stream of consciousness2”-type writing, very difficult to understand. These are also not a diary, at least not a diary that most people would write. Like a diary, my mom’s writings were not censored. Unlike a diary, she clearly showed at least some of them to her therapist, though I’m not sure exactly how they were used in her therapy.

What’s really hard about reading them, though, is that they are all over the place. Contradictory, nonsensical, rambly, very emotional, and so on. She wrote in cursive, and even her cursive would change depending on the day and her “mood.”

It’s actually difficult to try and describe these to you in words, so I’m going to do something I’ve never done before. I’m going to SHOW you some of them.

Some caveats first.
  1. The main reason I’ve never shared them before is that they were very personal to my mom. And to me. Sharing them felt like an intrusion… or maybe even a violation of her privacy.

    What’s changed with that? Two things:

    The first is TIME; simply put, a lot of time has passed. I don’t feel as protective about her writing and her privacy as I once did.
    The second thing is that schizophrenia and mental illness are still difficult to discuss openly in our society. Some would call this “stigma,” but I’m on the fence with that term. I’ve seen some push-back against it and I’ve seen push-back against that push-back. At any rate, SHOWING some of my mom’s writing might be useful to some. I hope so, anyway.

  2. The other issue was that my mom, in much of her writing, named people. Her parents primarily. Me. Her therapist. And a few others here and there. I was concerned about privacy issues, especially by posting anything like this online. However, time has passed and most of the people that my mom addresses are now dead (my grandparents foremost amongst them). I think (he says cautiously) that I’m on firmer ground3 then I might have been once upon a time.

  3. The last major issue was trying to put my mom’s writing in some type of chronological order. Simply put, it’s impossible. I have a giant box of her writing as well as a large binder full of even more of her writing. With only a few exceptions, these are a jumble and it’s hard to know when something was written. That’s made harder by both her tone and the context of her writing. That’s a big part of why they are so hard to read; there is no page one. There is no beginning. There’s no “right place” to start. I don’t even know when she started writing these in the first place.

    That said, there are a few helpful occurrences. First, she did date some things. Second, she occasionally organized them, even page numbering some groups of them, I presume to share with her therapist. That helps. And, of course, I only wanted to share some fragments of her writing, not try and share (let alone read) everything. Whew, boy. There’s no way that would be tenable.

Mixed with her writing are photographs of my mom. I took some time over the past few days to scan in some old photos of her that I have. Most of these are childhood photos. The sad reality is that after my parents split, when I was around 5 years old, all photos basically stopped. There are a couple of exceptions, but my mom’s deteriorating health (both mental and physical) combined with poverty meant that there just wasn’t “space” for photos. I don’t have photos of her as I grew up. I rarely have photos of myself from that era, too. So it goes.

The main reason to post photos of my mom, though, is to help document her life, to contrast the photos with her later writings, and to pose a question to everyone reading this. Can you tell when her schizophrenia started? Can you tell when the disease was really sinking its claws in? Was she 20? 14? 11? 7? 5?

What’s my point? Simply this. There’s no way to look at a photo of her and say, “yup, THERE it is. That’s schizophrenia right there. Got it!”

Our society is better (not great, but better) at dealing with physical illnesses, at least when compared to mental illnesses. When someone is having an “episode” in public, it can be scary. My mom’s episodes would certainly scare the hell out of me. Even now, all of these years later, I can still get uncomfortable thinking of them.

And yes, certainly some episodes can be physically violent. That’s terrifying, too. However, I find it important to remember that the perpetrator is also the victim, ravaged by a disease that we can’t see. Is it any wonder why people struggling with mental illness might turn to self-medicating to help? Especially if they are poor? Especially if they are victimized twice over; once by the disease itself and then again by the lack of societal support?

The late actor James Garner was in a 1986 film titled PROMISE. The film deals with two brothers. Bob (played by Garner) is the eldest and he winds up inheriting his mother’s estate after her death. He also inherits custody of his younger brother D.J. (played by James Woods). D.J. is, you guessed it, struggling with schizophrenia.

In his 2012 book THE GARNER FILES: A MEMOIR, co-written with Jon Winokur, Garner wrote the following:
Jimmy [Woods] researched the part of D.J. by spending time at a halfway house in Santa Monica called Step Up on Second… People in their late teens or early twenties — usually men, but it happens to women, too — can suddenly develop schizophrenia. Their odd behavior is often misinterpreted and they go undiagnosed. They self-medicate with alcohol and illegal drugs, and many wind up homeless, strung out, muttering to themselves…

I had no idea what schizophrenics have to endure. I learned that they inhabit a terrifying world of hallucinations and inner voices that seem completely real. Even when they’re well, they have the burden of knowing they can lose control in an instant. I’ve never forgotten what one of them said: “When I was awake, I seemed alone, even when I was with people. My life was narrated by thoughts that weren’t mine.”
… One day at Step Up on Second, Jimmy Woods met “Sam,” who gave a beautiful, eloquent description of what it’s like to be schizophrenic, Richard Friedenberg put it in the script:
  • D.J.: Do you want to know what it’s like, Bobby? It’s like, all the electric wires in the house are plugged into my brain. And every one has a different noise, so I can’t think. Some of the wires have voices in them and they tell me things like what to do and that people are watching me. I know there really aren’t any voices, but I feel that there are, and that I should listen to them or something will happen…
    I can remember what I was like before. I was a class officer, I had friends. I was going to be an aeronautical engineer… I’ve never had a job. I’ve never owned a car. I’ve never lived alone. I’ve never made love to a woman. And I never will. That’s what it’s like. You should know. That’s why I’m a Hindu. Because maybe it’s true: Maybe people are born again. And if there is a God, maybe he’ll give me another chance. I believe that, because this can’t be all I get.
Accepting the Emmy for Best Teleplay, Richard Friedenberg said he hoped the film would help schizophrenics by calling attention to their plight. I’m sorry to say that twenty-five years later, schizophrenia is the worst mental health problem facing the nation. Asylums have been closed, and government spending on mental health has been cut to the bone. There are new medications for schizophrenia, but though more expensive, they’re not much more effective than the old ones. And there is still no cure.

Garner and Winokur wrote that in 2012. I’m writing this in the early fall of 2024. Has anything changed? From where I sit, no. In fact, in June 2022 the World Health Organization (WHO) published WORLD MENTAL HEALTH REPORT: TRANSFORMING MENTAL HEALTH FOR ALL. In it, they note the following:
Schizophrenia, which occurs in approximately 1 in 200 adults, is a primary concern: in its acute states it is the most impairing of all health conditions. People with schizophrenia or other severe mental health conditions die on average 10 to 20 years earlier than the general population, often of preventable physical diseases… The most impairing state across all health conditions… is acute schizophrenia, which is given a health state weight of 0.78. Put simply, this means an individual experiencing acute schizophrenia is expected to have only one fifth of the health and functioning of a fully healthy person.

They then added that “On average, countries dedicate less than 2% of their health care budgets to mental health.” What an unbelievable policy failure that is.

I’ve said it before and I’ll say it again. My mom had dreams. My mom had hopes for the future. She didn’t want to be sick. And she didn’t want to be dead at the age of 48.

In all of her writings, the most haunting line is this one:
Judith Lee Julien - Afraid of Dying Alone
“I’m afraid I’m going to die alone.” But that’s exactly what happened.

Thirty years later, I still feel her death is a tragedy. I never got to know her as an adult. She never got to know me as an adult, either. She never got to meet my wife. She never got to meet my dogs or my cats. She never got to see me draw.

And I never got to see the things that she could do, either.

THAT is the awful part of her disease. It took her away. Yes, she had good days and bad days. It’s hard for me to remember or to know which good day was tied to medication and which bad day wasn’t. I suspect it was a mix, but I’ll never know. And as she got into her 40s, her physical health declined. That was mainly due to years of not taking care of herself. That wasn’t a conscious choice. I view it as an example of the spoon theory. She simply didn’t have the spoons for proper hygiene, exercise, nutrition, and so on. Sadly and inevitably, that caught up with her.

Since so much of her decline was tied to my own teenage years, I don’t have memories of my mom being healthy. I wish I did, but I don’t. I’m left, as always, with questions and “what ifs,” but no answers.

I wish that there had been better supports for her, in all senses of the word. And I dearly wish that other people who struggle with mental illness had better support, too. That my mom’s death, as sad as it was and is, might have led to change. But her death didn’t change anything. In fact, if she had lived, she would have been victimized by the so-called “Common Sense Revolution” that the Mike Harris government enacted in Ontario in 1995. These social service cuts eviscerated welfare income and other public health supports, as Scott Sørli so aptly demonstrated4. I do honestly feel that if my mom had somehow lived to experience those cuts, they would have killed her.

She was a deeply caring human being who was given a brutally unfair disease through no fault of her own. I am proud to have known her. And I miss her.

I’ll leave it with that. Please do look at her photos. Can you tell when her schizophrenia started?

Photos of my Mom


These are photos travelling back in time, from when my mom was pregnant with me to back when she was a baby herself.
Judy Lee Smith pregnant with me
Judy Lee Smith at age 20 at Heidelberg Castle in Germany
Judy Lee Smith at age 18
Judy Lee Smith at age 14
Judy Lee Smith at age 11
Judy Lee Smith at age 10 in Moose Jaw, Saskatchewan
Judy Lee Smith circa 1956
Judy Lee Smith in Brownie uniform at age 9
Judy Lee Smith with friends at Christmas in Camp Gordon
Judy Lee Smith at about age 7 with a friend
Judy Lee Smith and her aunt at a wedding in Guelph, Ontario
Judy Lee Smith at a wedding in Guelph, Ontario
Judy Lee Smith at age four
Judy Lee Smith and possibly my uncle
Judy Lee Smith in the snow after a birthday party
Judy Lee Smith in the snow
Judy Lee Smith at 20 months
Judy Lee Smith at 20 months
Judy Lee Smith at age two

Samples of my Mom’s Writing

A quick note: I’m not going to explain these or try and clarify them. I’m far happier to let them sit “as is.” But to clarify one point: I use the pen name “Von Allan” for all of my art-related work. My real name is Eric. So when you see that name in her writing, you know she’s referring to me.
Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Judith Lee Julien - Writing with Schizophrenia Sample

Foot Notes

Talk Ottawa Interview



Teaser image and place holder for the Talk Ottawa interview with comic book artist Von Allan

One of my very first long form interviews and one that I thought was lost! This was done way back in 2008 with James Hendricks, then host of Talk Ottawa here in Ottawa, Ontario. This interview meant a lot to me since I was basically just starting out and he and the producers of the show were very open and welcoming.

James and I chat about comics and graphic novels, the challenges of being an indy artist, and the changing face of technology and how that applies to comics. We also do a deep dive into my very first graphic novel, titled “the road to god knows…”, that deals with parental mental illness. In the case of that comic, I drew on a lot of my own experiences growing up with my mom; she was diagnosed with schizophrenia when I was very young. We talk about that, too.

Oh! My art that was presented in the original video was pretty rough, so I decided to update it with art revisions I did some years ago.

The player should work below. If not, or if you'd prefer to watch on Youtube, please visit https://www.youtube.com/watch?v=tS8ADTEwBcI

Other Links

Panel Discussion from 2018 Low-Beer Memorial Lecture


2018 Edith and John Hans Low-Beer Memorial Lecture photo On September 27, 2018, I was part of a panel discussion during the 2018 Low-Beer Memorial Lecture that followed a screening of the documentary film "I Am Still Your Child." The film and panel discussion were presented by AMI Quebec (Action on Mental Illness) and was held at Concordia University's Oscar Peterson Concert Hall in Montreal. It was a pretty amazing evening!

The panel discussion was moderated by the always awesome Loreen Pindera from CBC Montreal and featured Megan Durnford (the film's writer and director), Rebecca Heinisch, Marie Leavens, and myself. AMI Quebec's Dr. Ella Amir added closing comments. It took a little while, but I'm very pleased to announce that the audio recording of the panel discussion from the panel discussion is now available! Yeah!

The MP3 can be played directly in your browser at http://vonallan.com/Audio/Low-Beer-Memorial-Lecture-September-27-2018.mp3. You can also directly download the MP3 by right clicking on the link and choosing "save as" (or whatever is appropriate in your browser).

It can also be played in the audio player below:


Oh, and some additional photos from the events can be found right here.

Lightly Edited Transcript

Loreen Pindera: Introduce yourself.



Megan Durnford: I’m Megan, the writer and director of the film [“I Am Still Your Child”].



Marie Leavens: I’m Marie Levens. I’m Sarah’s mother.



Rebecca Heinisch: Hi, my name is Rebecca Heinisch. I’ve been working with children who have parents suffering from mental illness for the past, I would say, 14 years. I wrote a children’s book to help children better understand what is going on in their families when the parent is ill. And I’ve also, with my husband, founded a non-profit organization and we run programs for these children. And they’re for children between the ages — the program’s between the ages of 7 and 17.



Loreen Pindera: And Marie would like to say something about that program.



Marie Leavens: Sarah is actually part of that program when she was 8 years old and it really, really helped her.



Rebecca Heinisch: Thank you.



Loreen Pindera: I have… I think you can hold off on the applause till the end now. Or we’re going to get really tired.



It’s the third time I’ve watched the film now in the last few days. And what I notice is every single time I take something different away from it that I didn’t notice the first time. And then I thought “oh look, there’s these things that are…” some of that is just the fantastic editing job I think, Megan. But one of the things, I actually pulled out a pen and jotted down this time one of your lines, Von, which was, “I was trying to go to school. I was trying to live my life.” And I thought, “what a challenge that must have been.” And I thought maybe we could just start by you talking about how you managed to juggle school, work, friends, and caring for a parent, at the same time.



Von Allan: I’m not great with these things, so bear with me. You know, the thing is it’s not like there’s a blueprint for anything. You’re in it and things are happening. And then you’re reacting to what’s happening. So I think if I had known some of what was eventually going to happen with my mom, that might have made my childhood and teenage years a lot harder. But it was tough.



It’s very hard to be — for me — being in a public school. It was never a particularly safe environment. And I never particularly had — you know, you hear stories of the fantastic mentor-teacher that you can really bond with. I never had anything like that and I was bullied and picked on and what have you, as well. It helped being tall early. That aided me a little bit. I hit the height I am now at about 13, so that kind of helped. But for the most part, I kept my head down. And I tried to get through the day and just get through my school time as much as I could.



And I was lucky in some ways; while I’m not close to my father at all, my dad also lived in Ottawa. My mom and dad got split up very young, when I was very young. And it meant that there was somebody I could go to during the times my mom was hospitalized or in deep crisis. And it’s unfortunate; my relationship with him sort of fell apart in my early 20s. I haven’t seen him since 1998. So, yeah, it’s been a long time. But I’d be lying if I said he actually wasn’t there for me. He was. And he did what he could.



So a lot of it is just, “it sucks.” It’s hard to go through this. And it’s hard because you don’t know how anything is gonna play out. You don’t know what the other end looks like. You have no idea of what the future will bring. And you just muddle through. And that’s basically how I view most of my childhood and teenage years, is I just “muddled through” as best I could.



Loreen Pindera: I’m gonna turn to you now, Marie. I saw in all three of the protagonists in this film some incredible strength of character. And also the challenges. You, Megan, put the stat up very early on that 30 to 50 percent, I think, of people who have parents who have a mental illness can come into a mental illness themselves. So that’s been… that is clearly a struggle for Sarah throughout. And we have a little hint of that, that she’s not going to school that you homeschooled her. Do you want to share a little bit of that story?



Marie Leavens: Well, when Sarah was in kindergarten, she missed a third of the year because of a different illness. She had a surgery and stuff. And by the end of the year, you know — well, because we read a lot at home — while the other kids at school were able to put two, three words together, my daughter was able to read entire books in English without help, and in French with a little bit of help. So we’re like, “what’s she gonna do in grade one?”



My husband already couldn’t work at that time. For various reasons, but mainly his mental illness. So he’s like, “well, I might as well, you know, let’s do the homeschooling routine.” And we’re sure glad we did. She performed really well.



And then in 2015, my eldest son passed away. And that really had a big impact on Sarah. And according to psychologists that we saw, if she had been in school, she might have fell in a crack. So it was a good thing she was home. This year, she’s back at school. She’s at adult ed, because she’d like to have a diploma. But as you saw in the movie, she mentioned she had anxiety, and so it’s been really tough on her. Especially math, causing her a lot of anxiety, which is why she couldn’t be here tonight. Her anxiety was too strong. She just couldn’t get out of her room. But on the whole, she’s still very strong. She has her days like anyone else, but she’s still very strong. And we finally just managed to get her some counselling.



Loreen Pindera: That, I’m sure, is a whole other chapter that would take us in another direction. Focusing on the issue tonight of carers, Sarah — because she was home with her dad a lot — took on this role of carer along with you too. Do you want to talk about how that affected her?



Marie Leavens: Yeah. Well, especially at the beginning, because I was the breadwinner, so I was out of the house up until the end of 2012, I was out of the house. So her dad was taking care of her, but then he got sick around, oh my gosh, 2007, roughly. And so Sarah was taking care of him. He couldn’t bend down to do things, because he’s physically ill as well as mentally ill. So, yeah, she had to, on a very early age, you know, “Sarah, can you do that?” “Sarah,” all the time. And then he had his episodes once in a while. So she’d just hide in her room, and I’d come home at night, and you know, she’d be crying.



Finally, by the end of 2012, my husband couldn’t be left alone, so I came home with her. But many times we heard her say — not many times, but a couple of times — we heard her say, you know, “I can’t ever leave my parents, because they both need me.” Because, of course, with the mental illness, I also had depression. So there’s been a time where she’s been picking me up, as well. So it’s been tough on her. But eventually, my husband and I convinced her that she has to have her life. So I’m glad to say that she’s looking forward to that.



Loreen Pindera: How old is Sarah now?



Marie Leavens: She’s going to be 18 in a few weeks.



Loreen Pindera: I want to turn to you now, Megan, if I can. Just talk about what drew you to make this film. Why did you feel it was an important subject to tackle?



Megan Durnford: Well, the way that came about is quite a complicated story, but I’ll just sum it up. I have a friend who organizes TEDx youth talks in Montreal. So she’s always looking for speakers. And at one point she invited me to go hear the story of a young woman in St. Jerome. And this woman was going to talk about what it was like to grow up — everything was quite fine. And then, suddenly, her mother went into a depression when she was 14. And so she was going to talk about the next 10 years, what happened after that, how they both came out the other end. So I went and I heard this young woman, and then my friend said, “well, do you think this could be an interesting topic for a documentary?” And I said, “well, I certainly don’t know now. I have to do so much more research. I have to see is this a typical story? What is the incidence? What’s the international context? What are the resources?” But then as I started to look into all these other issues, I realized,

“my goodness, it’s an extremely common situation that isn’t especially well known. And there are potentially very serious long-term repercussions for all of these children and teenagers.” And so I realized, “yes, there is absolutely a potential to make a documentary, and absolutely there is a need to raise public awareness about this.”



Loreen Pindera: Do you want to tell us a little bit about the process? How did you find your amazing protagonists?



Megan Durnford: That took a long time. That took a long time. Well, the first step was I had to pitch a project to a producer. So I pitched it to Katarina at Catbird Productions. And she was able to pull together money for research and development. So then I was travelling in different parts of Quebec and meeting families who were living with this situation. And you can imagine each situation was so different, right, depending on the age of the child when this happened. I mean, in many cases the child grew up from babyhood on with the parent already suffering from mental illness. In many cases it sort of happened suddenly. Huge range of different disorders. And then I was sort of looking for commonalities in the young people’s experience. I would say the hardest part of all, though, was not finding people to tell me their stories. The hardest part was to have someone agree to be filmed while telling me their story. So, yes, so thankfully, Jesse, Sarah, and Von agreed to participate and I think really they realized that — although it was, of course, going to be difficult for them to do that — they realized that they could help other people through telling their stories.



Loreen Pindera: That’s a good segue to pass the mic back over to Von, perhaps, and ask you that question. Why did you agree to put yourself out there like this?



Von Allan: Well, Megan and I first started talking, it was a while before — it was a slow developing process, with me sort of constantly thinking, “this thing isn’t going to happen. It’s going to fall through.” But it didn’t. And, well, no, obviously, I mean, who knows how it was going to play out. But I felt I had the advantage, I think, of having… my mom died in 1994. So there’s been a certain amount of time that’s gone past with that. And I felt getting involved in the film was for some very similar reasons for why I wanted to do the graphic novel [“the road to god knows…”]. I thought it was an interesting story. I thought in many ways that what happened to my mom — and I still think what happened to my mom — isn’t fair. And I think that talking about that helps. It doesn’t solve anything, but getting some of those experiences out there can’t hurt. And there is — and I’m sure everybody here knows this — but there’s still a lot of stigma, still a lot of stereotypes with it. So anything you can do to sort of punch through that is great.



Really, the best thing I can use as an example for how things have changed is I said earlier my school life wasn’t great — and it wasn’t — but I had the opportunity this past May to go back to my junior high school — Glashan [Public School] — and they were doing something which would have been unthinkable when I was a kid is they actually had, for grade eights, a mental health week. And they had a mental health symposium and they had all kinds of different guests and public health advocates and what have you. It was really neat. And they invited me. And it was weird to go back into that school that certainly was not a happy fun place for me, but talking very openly, very similar to what’s in the film and what have you — and I’m pretty open when anybody talks to me anyway — it was really neat to talk to kids that were 12, I guess, grade eight, and then have, at the end, some of them even share some of the stuff they’re going through. And that, again, would have been unfathomable when I was a kid.



Loreen Pindera: Of course, one of the purposes of AMI-Quebec’s existence is to network and make some of these connections and to find ways to provide some of these resources. So maybe you could just talk about what you were missing as a kid. What might have helped?



Von Allan: Money!



Loreen Pindera: Okay, start with that.



Von Allan: Well, because it’s still the thing that poverty made harder. And the courage my mom must have had — I’m only more aware of now as an adult — to navigate Ontario — we were in Ontario — so to navigate Ontario’s social services system when she was at her worst. And, we were on welfare. So there was a constant battle of “there’s not enough money, how are we going to make rent? Where’s food going to come from?” She went to food banks. She got help and aid anywhere she can, any way she could have. And I don’t know how she did it. And she shielded me a lot from it. So I only became vaguely aware — more when I was getting into my teenage years — about what she was doing. And it was just… it was brutal. And that was under — to be political — that was under Bob Rae’s NDP government in Ontario. And she died the same year, I think, that Mike Harris’ conservative government came into power. And at that point in Ontario, welfare, social services, mental health, took a massive hit. And I don’t know how my mom would have handled that. She was already holding on barely at that time. And there would have been a massive reduction in what meagre income she was getting into the later part of the 90s.



So first and foremost, it’s not that money cures everything, but it can take some of the pressure off, the pressure of how you’re going to make rent, the pressure of how you’re going to feed this kid. Or this kid needs clothes for school, this kid needs some various support. And I know — particularly as an adult, because we all go through this — but looking back on it, the anxiety that must have been terrifying to deal with, on top of everything else. And then the rest of it is certainly a better, a more easily navigatable social services system. My mom bounced around. So, there was — to this day, I think — that the one big thing she was missing was an advocate. Somebody that could have spoken for her, particularly when she was going through — again, at her worst — to get help, to have somebody there who could represent her.



And, on a personal note — it’s already a personal note, but on a more personal note — my wife has gone through five physical surgeries now. So, she’s fine mentally, but she has gone through a lot. And I’ve been able to go with her. And it’s hard. It’s been interesting to watch her talk to her surgeon or various physicians and what have you. And, you know, be anxious, to be sort of struggling and to be like, “well, you’re going to go into surgery and we’re going to do some stuff.” And it’s been nice to — for the most part, keep my mouth shut — but then to be able to go, “oh, you wanted to ask about this.” Or, “can we talk about this?” To have somebody as a third person — and I love her — but to have somebody as a third person being able to help navigate the system. My mom had nothing. And, wow.



Loreen Pindera: To what extent, I want to hear from everybody else too, but while we’re on this track, to what extent, Von, did you play that role as advocate as a kid?



Von Allan: Not as much. I’d be lying if I said otherwise. And I think it’s twofold. One, a lot of it is I was really young. And then secondly, I think my mom really did try to shield me from it. And that broke down as I got into my teenage years. So she got more open as I got older about what she was going through, but I think her ability to shield me from it also deteriorated. But it wasn’t like I was going to into psychiatric wards with her, except to visit her. And she had a psychiatrist that she was seeing. And I mean, I would sometimes go with her and wait in the lobby, but that’s it. It wasn’t like I was going into the room with my mom.



So really, at the end of the day, my mom — she was still on her own. So I could help at home. I could take some of the pressure off at home. I could clean. I could do certain things. But it was still tough. And in some ways I wish I could have done more. But I think the film — it says it in the film pretty well. “At what point do you stop living your life?” And I was 18 and 19 just at the very end. My mom died when I was 20. So my life might have been very, very different.



Loreen Pindera: I’m going to take the mic away from you and pass it over to Marie and ask some of the same questions, from the context of Quebec, about the resources that you could have used for Sarah that maybe weren’t there to start with.



Marie Leavens: Well, I think we’ve been very blessed as a family here because I have a big mouth, so I’m able to barge through stuff. And I have learned very early that I had to, you know, when I go to a doctor, it’s like, “yeah, she needs this, she needs that.” But sometimes it’s very difficult. Sarah is finally going to get help from the Jewish hospital for her anxiety disorder. They refused to have her diagnosed, to diagnose her earlier. They refused to try to diagnose her earlier. They just diagnosed her with ADHD. She was too young, apparently, to be diagnosed for bipolar disorder. Today we’re finally getting somewhere. We met with a psycho-educator just this past week. It’s been four or five years now that I’ve been trying to fight my way there. Especially since 2015 when my son died, it really hit hard on Sarah because he was like her second dad. She’s been seeing a psychotherapist for two years now, but she can only see her once a month because I can’t afford more. And, you know, when she went to the CLSC for counselling, first of all, it was all in French. Yes, I am French, but my daughter is a lot more comfortable in English than in French. And the psychotherapist refused to acknowledge her faith as something to help her. So Sarah was feeling really bad about that because her faith — as you’ve seen — she’s very connected with the church, with the youth especially at the church. And it’s really helping her. These kids have really been supporting her throughout everything, although they don’t understand everything. But just the fact that they’ve been praying for her, being there when she was crying, you know, it’s really been tremendous for Sarah, that network.



Loreen Pindera: I want to come back to that, Marie, and I’m not forgetting about you, Rebecca. But, Megan, maybe you could talk about why that was so critical to include in the film. Because the church scene and… what were you trying to show there?



Megan Durnford: Well, in fact, that was absolutely essential because that is a huge part of Sarah’s story. Because I spent quite a bit of time with Sarah and Marie and Andy. And I could see that even though Sarah hadn’t really found a lot of help through the social services yet. They were waiting and now, finally, success. They had, well, a lot of really strong emotional bonds within the family. But I could also see that the church was a very important source of support for Sarah. So it was essential to include the scene because that is part of what was helping Sarah deal with the situation that she was in.



Loreen Pindera: There’s also her friendship with Helena. Helena, is that…



Megan Durnford: Marlena.



Loreen Pindera: Marlena, sorry. Yes. And I guess it’s the same thing in terms of community and friendship.



Megan Durnford: Right. And as she says in the film, she says that, of course, obviously they’re teenagers. They have a lot of fun just goofing off. But both of them can relate to each other on a very deep and serious level about anxiety and other mental health issues. So I could sense that right away and hopefully you can from the film that they’re very tight.



Loreen Pindera: Von, maybe I could ask you the question about friendships and whether, you know, how isolated were you as a kid? Were there people you could talk to? What other resources did you draw on to become so grounded as you are today?



Von Allan: [Laughter] Well, I don’t know about the last part, but I did have a small collection of really good friends, some of which I’m still friends with to this day.



But. I was pretty embarrassed about how I lived. I knew we were poor and I knew our place was pretty crappy. And I was pretty shy and — I don’t know if I would use embarrassed, but it’s probably the best word for it is — talking when you’re 12 or 13 with other friends about my mom’s situation was just a non-starter. So I didn’t do it. And I can only look back and go, “yeah, I probably was more isolated than I realized.” But at the same time, I don’t think one can overstate the ability to just go hang out with friends and not have to stress about this stuff and not have to think about it. And that, I think, in hindsight, helped me far more than I ever realized. You know, I was a geek so I like comics, I like sci-fi, and I like role-playing games, and being able to go do that on a Saturday afternoon or after school or something like that was probably far healthier than I ever realized.



Loreen Pindera: Would it have been helpful if someone had said to you, “there’s a group of other young people whose mothers are schizophrenic, would you like to go talk?” Would you have even done it?



Von Allan: I really don’t know about that. I really don’t. I get asked this sometimes, “what if there was a great teacher? What if…” When I did the presentation at the junior high, at the end one of the [sessions], teachers were like, “well, where do you suggest somebody in your situation go?” And I’m like, “Kids Help Phone? I don’t know!” This is not easy things to deal with. And it really depends on the kid. It’s going to depend very much on who you are rather than having the right… So yes, obviously more things out there, more supports, more public supports, more obvious supports, but different… there will be different solutions or maybe no quote-unquote “solution” at all for kids. And I don’t think, when I look back at how I was when I was 12 and 13, that I would have even been comfortable broaching the subject, particularly to strangers, even if I knew they were going through something similar to me.



Loreen Pindera: Okay. Did you want to say something, Megan? Yeah, okay. I’ll pass that back to you again, Marie, just to talk about does Sarah participate in such an organization? Would it be helpful for her or…?



Marie Leavens: Well, like I said, Sarah has done the Anna workshop and that has really been a big, big help. There she’s learned how to relax when there’s a crisis in the house and how to cope with it. But the other thing that Sarah’s had an advantage with is because of our church, because of the co-op where she was going, though the people there were like a big family. There’s no judgment. There was nothing. So she was always able to speak freely.



It took a while because when she was very young, my husband was very upset when I would talk about this. And one day I said, “listen, Andy, I’m the kind of person I can’t keep things in. To cope with it, I have to talk it over. I have to share with my friends. For them to pray with me and try to understand what I’m going through. So if you don’t let me speak about it, then I’m going to end up with having a problem myself.” Finally he said, “okay.” And after that, he found it freeing for himself to be able to talk about it. Because everyone at our church — we’ve been there since Sarah was born — before Sarah was born. So we’re well-known and well-grounded. And everybody knows about these issues. So whenever, even if he’s at church and he flips, nobody is surprised. There’s support. There’s a network. So because of that, Sarah knew she could open up very early. So that’s always been, I think, a great thing for her.



Loreen Pindera: I’m going to ask you to pass the mic over to Rebecca now. And maybe I could get you to start by telling us — it’s 14 years now since the book came out.



Rebecca Heinisch: Correct.



Loreen Pindera: Tell us what led you to write the book in the first place.



Rebecca Heinisch: Well, there are two things. One of the things is personal experience. Direct personal experience. I was raised in a family where mental illness was present. In my case, it was my mother who was suffering from mental illness and from a very young age, from the time that I was born. And I can relate to many of the things that Von said, that Sarah has said, that Jessie said also, about having to live that situation, but in silence — being isolated. In our family, it was never ever addressed. Mental illness was not addressed, despite the fact that there were many hospitalizations, many suicide attempts, and so on. And just the fact that it was not addressed, that it was so taboo, really impacted me. And I felt that there was nothing around — being very isolated — there was nothing around to help. And so, I just kind of had to, as Von said, keep my head down, push forward, go on autopilot, and just move on and cope with the unpredictability, the fact that everything is very unsettling. And as Sarah said, life is like a roller coaster, very much like a roller coaster.



So, having lived the experience myself as a child and growing up and becoming an adolescent and really having no one to speak with, I realized that there needed to be resources for children to help them understand, “well, what’s going on in my family? Why is my parent acting like this? What can I do? And is it normal that I have all these conflicting feelings? Is it normal that I want to help so much? Is it normal that I feel angry?”



Also, I drew on experience as a teacher because I was working in the elementary schools and it’s such a prevalent issue. It was not rare in a class of maybe 20, 25 kids to find six of them or seven of them who were living with a parent having mental illness. And I was seeing these children in class being totally dysfunctional on the social level, on the academic level, and yet they were totally isolated, also. And this really shook me to the core. I could relate to them, I felt for them, and I just felt — even as a teacher, we didn’t have the tools, as a teacher. The schools didn’t have the tools to help these children — and so I felt compelled and called to write a book and help bring awareness to the fact that many, many children are in this situation.



Loreen Pindera: So, “Anna and the Sea,” maybe you can tell us why it’s called “Anna and the Sea.”



Rebecca Heinisch: Well, the protagonist’s name is Anna, and she is a young girl. Her mother suffers from mental illness. And the setting is in a village by the sea. And Anna finds comfort through two different characters who come from the sea. A crab named Gustave and a turtle named Tremender. And they are actually very therapeutic. They’re like counsellors for Anna. And in meeting with these characters she’s able to voice her questions and realize that her feelings are normal. And also she receives several tips, help about self-nurturing and also validation that it’s okay for her to want to invest in her own life.



And this is an issue that’s very critical for children growing up with a parent who’s mentally ill. Because to separate from your parent brings on feelings of great guilt because you feel like you’re abandoning them. So in the book she is given the permission through this very important creature, the crab, given the permission to be a child, to have her feelings and become and develop and become all that she can be.



Loreen Pindera: So you have, it’s gone from a book to a resource that’s being, we were discussing earlier, widely used. In fact, I discovered in my web search today that they’re crazy about this book in Australia! So maybe you can tell us the short version of how it got where it is and how it’s being used today. How the book and the resource workbook are being used.



Rebecca Heinisch: Well, I can just sum it up in one word. It’s snowballed. And never in my wildest dreams did I ever think that it would grow and become a resource and a non-profit organization. I just wanted to start with a book, something that could help address the issue. And there was a great response from the mental health practitioners who began requesting, “well, the book is wonderful, but do you have any educational activities? Can you go further? Is there anything else out there?” And I thought, “well, maybe there could be.”



So I took sabbatical leave from teaching and I began a pilot project with some children and began creating activities — educational activities — and then presented them to practitioners and they felt it was a worthwhile endeavour. And so we received funding from the Alcoa Foundation to produce the first program, which is the Anna Workshops. And we began promoting the workshops all throughout Quebec. We’ve trained practitioners in 29 cities. But what we did was we set up in Trois-Rivières the organization where we began intervening and creating other programs, programs for adolescents, and a very important program, which we set up quite early, which is the Navigators. It’s a respite program.



Because — Von, if I can just bounce off something that you said earlier, if it’s okay with you — you said the power of getting together with friends and just hanging out and doing things, the power of getting together. So through one of the programs we created, we allow the children to hang out, but to do activities. We bring them horseback riding, fishing, to museums, and these activities go on all throughout the year. And this is a very, very important part of the resources that we offer, because the kids need to get out of the house. And they need to get out, they need to be together, and they need to have fun. It’s the power of pleasure. And it’s a very long process for a child growing up with someone who’s mentally ill to realize that they are allowed to experience pleasure.



Loreen Pindera: Thank you very much. Marie, maybe you could talk a little bit about Sarah’s experience with the program.



Marie Leavens: Yeah. Well, like I said, she’s learned to really relax in crisis and that kind of stuff. But she also has done the respites. And you know, like Von talked about poverty; because of my husband’s mental illness, because he didn’t take care of himself, now he’s physically ill, so I had to leave my full-time job, take care of him full-time as well. So we live on welfare. Because when you have a husband who’s bipolar, you don’t have a lot of savings. It’s almost a taboo word in our home.



So, because of that, we could never offer Sarah activities like that. And through Alpabem — which is similar to AMI-Quebec in Laval, where we live — Sarah’s been able to do climbing. She’s been able to go to some museums, all kinds of activities like that. Some workshops, like bead workshops. And she would come home beaming. Because, you know, it was something that she could never have dreamed. And for that little bit of time, she was a kid. We talked about relationship earlier. And that’s one thing for Sarah that’s always been very difficult. She never had friends around our home. The few times she had friends, she was bullied. She was not… She was never happy there. So that’s why we kept in contact with the youth church, because there she was never judged. Same with the homeschool co-op. Those are the place where those were her havens. But having this time where she could just do something very special. Something that she could come back to co-op to her friends at church. “Guess what I did this week? I went rock climbing!” And, you know, she could hear the others talk about that. But she could never even dream of it. So for her, that was really big.



Loreen Pindera: I think we have to wrap up quite soon. But I want to touch on a couple of other things. Von, just having heard what you heard there. I know we’re talking a quarter of a century later, but do you think some of those resources would have made a difference?



Von Allan: Maybe. It would have been helpful to know that something like that was out there. I think that’s probably about as far as I could go with it, because I have no idea. I mean, I was… I cannot over-emphasize how shy I was as a kid. And a lot of things changed as I got older. But I was really, really introverted when I was young. To feel safe in an environment where you could actually open up? That’s tough. But to be able to get away from it and to be able to just not even have to think about it and do other things. That was huge. And because we didn’t have a lot of money, one nice thing — it’s changed a little bit now, but particularly then — was comics were cheap. Role-playing games were pretty cheap. And because of the nature of the game itself, you could just play it basically forever. You don’t need a lot of stuff aside from paper and pencils and dice. So we could tell stories. We could do goofy things. And that — particularly for low income [families] — that really — more so than I probably ever realized — really helped me through. And libraries helped and stuff like that too.



Loreen Pindera: I want to… when we first met this evening, I said to you, “wow, it’s so interesting that all three of the protagonists in this film are such creative people.” Do you play the guitar too, by the way?



Von Allan: No! Not a musical bone in my body!



Loreen Pindera: And you said to me, “and there’s the dog theme,” which I didn’t notice until the third time. But maybe you might… you clearly feel great affection for your dog, or you wouldn’t carry him around. Maybe you could just talk about that — and maybe Megan wants to talk about it, too — but how the… and I’ll see if you want to say something about that too Marie, but I think it was worth touching on because clearly the dog was important and is important in everybody’s lives.



Von Allan: Dogs are amazing. I’m a huge believer in cats and dogs. I’ve had multiple in my life. And they are always in the moment, they are… there’s unrequited love. They are who they are, and they are amazing characters. Corbin, my dog, still my dog now, is a rescue husky from Iqaluit who does not like to walk. [Megan] didn’t believe me, and was like “no, let’s get some shots of you walking your dog in the film.” And I was like, “this is not going to go well.” And it didn’t. He walked for a bit, and then — he just he does not love leaving the house.

And it’s also been interesting to watch a dog who has also gone through some trauma. He is a perfectly happy, healthy dog, but he doesn’t like leaving the house at all. So, yeah, dogs. Amazing!



Loreen Pindera: I wonder if your choice of a dog who’s gone through trauma has something to do with your childhood. I’m not going too far here.



Von Allan: I like rescues, so it was probably more dumb luck. Our previous husky who died, Rowen, she was also a rescue, but was much more of what you think of as a husky, which is “you point them in a direction and you walk forever.” That dog would walk all over the place. So we’ll never know exactly what Corbin’s mix is.

He’s a husky mix of some sort, but he bonded to us. He bonded to his home, and that’s magic for him.



Loreen Pindera: I think that I’ve gone through my question list here, and it’s probably… you probably have your own, and I think we’ll have a little time afterwards to have one-on-one conversations. Is there anything else that anyone would like to say before I wrap? That perhaps I haven’t… go ahead.



Marie Leavens: Yeah. You’re talking about the dog. In our home, Drake is called the “Dog-ter.” Because he really, really, really helps my husband. It’s amazing, amazing how much he points us like a lot. My husband, like when you heard me scream at some point and the thing went black, my husband hadn’t died. It looked like that when you look at the movie. But he has those fainting spells. Well, they’re not really fainting spells. It’s like narcolepsy. He falls asleep on his feet, but it’s due to another side of his mental illness. When anxiety goes high, he starts passing out. And that was at the beginning where we weren’t quite sure what was going on. Now we know a little bit more. And the dog could tell us up to 10 minutes, 15 minutes sometimes, ahead of time, that he was going to have a spell. It’s pretty amazing.



Loreen Pindera: A last word to you, Rebecca. Is there anything you’d like to add?



Rebecca Heinisch: I would just like to say that this film, this documentary, is so powerful. And I’m just so grateful and thankful that you’ve made this documentary, Megan.



Von Allan: Yeah.



Loreen Pindera: Yes. Megan, maybe you could just tell us what life the film has now? Where does it go from here?



Megan Durnford: I don’t necessarily know the answer to that. We’re waiting to hear back from… Well, there’s a conference in Oslo in May that is considering it. There’s various film festivals. There’s plenty of community screenings. Actually, apparently in October it will be screened in Australia, the community screening. So, it’s just getting going.



Loreen Pindera: Oh, is it going to be translated? There you go.



Megan Durnford: There is a French version.



Loreen Pindera: And I think you all know that you can find it on CBC online. If anybody doesn’t know how to find it, I think actually all you have to do is look up cbc.ca and the name of the film and you’ll come straight to it. It’s very easy to find and it’s going to stay online for some time… I think forever, for a long time.



Ella Amir: So thank you very much, everyone. Thank you very much. I feel it was really a powerful and remarkable documentary. And I know that it will have… I’m sure that it will have life of its own, not only in Australia and New Zealand, but also here, because we really do hope that it will help us to put young carers on the map and this is certainly a good step forward. So thank you very much, and thank you very much, and see you next year.

CBC Montreal interview with Von Allan on Homerun (September 27, 2018)


Just prior to the September 27, 2018 screening of the documentary film I AM STILL YOUR CHILD in Montreal as part of the 2018 Low-Beer Memorial Lecture (photos from the event are here), I scampered over to CBC Montreal to do an interview with Sue Smith on the drive home show "Homerun." And thanks to the CBC's Loreen Pindera, I now have an audio copy of the interview I can share!

You can listen to the interview by clicking here or by clicking play on the old timey audio player below. In addition, a lightly edited transcript is provided below.


Lightly Edited Transcript

Sue Smith: You know, we often talk about getting resources for people struggling with a mental illness. But what we don’t hear about are the children who act as caregivers for their own parents who live with a mental illness. Montreal filmmaker Megan Durnford saw this as a problem. So she made a documentary featuring three people who grew up as child caregivers.



Audio excerpt from the documentary film “I Am Still Your Child”: It can be a lot with mom and school, but like, thankfully she’s not super needy right now and I help her when I’m able to. You know, if something happened with her, I don’t care about my essay. Like, I’m going to do whatever she needs me to do because her mental health is more important than my grade for this class.



Sue Smith: That’s the voice of Jessie Bokser, one of three people featured in the documentary, “I Am Still Your Child.” Von Allan is also in the film. Von’s mother struggled with schizophrenia. She died more than 20 years ago. And Von joins me in the studio. Thanks for coming in, Von.



Von Allan: Oh, you’re very welcome. Hi.



Sue Smith: Hi. So I just came from the film. I’ve just finished watching it. It’s pretty emotional.



Von Allan: Yeah.



Sue Smith: So tell me a little bit about your story. What was it like growing up with a mother with schizophrenia?



Von Allan: It was tough. My mom had problems even before I was born, I’ve subsequently found out. So she was ‘mom’ when I was a little kid. And it was only as I got older, probably around nine, maybe even ten, that her problems — I think her ability to hide her problems from me diminished. And I was an only child. It was just me and my mom. And then her ability to want to talk to me more about it — to be more open about it — also increased.



But at the same time, her situation was getting tougher. She was having nervous breakdowns and [would be] hospitalized for a while. And so she would sometimes disappear for a few days, a few weeks. And then she’d be back and she’d be ‘mom.’ In hindsight, it was a more disruptive upbringing. At the time, I knew we were poor. I knew we were struggling. I didn’t know that things were, quote unquote, ‘wrong’ with my mom, until I became an early teenager. And I sort of realized ‘she’s not really like other moms.’ She’s smart. She’s capable. And then sometimes she’s not. So it was a unique upbringing. And there wasn’t anybody to talk to about it either.



Sue Smith: No. And you have this line that you say in the film that just came back to me as something like poverty, bankruptcy, schizophrenia, all three together. That was rough. I mean, that’s rough.



Von Allan: Yeah. Yeah. Well, I mean, I’ve particularly as an adult, I get sometimes stunned by the courage it must have taken my mom to be trying to raise a kid, having these issues, and then — because we declared bankruptcy around when I was 12 or 13 and then we were on welfare in Ontario — she was trying to navigate a somewhat dysfunctional social service system then. And in many ways, it’s gotten much worse now. And I don’t know how she did it. And she did it without an ombudsman or an advocate. I was too young. There wasn’t anybody else. My mom and dad split when I was very, very young.



Sue Smith: Although you talk about the spaghetti incident in the film as a time when you did call your dad in. So it does seem like maybe once in a while he was able to help you.



Von Allan: Yeah, I think I was lucky for some of that stuff is my dad was in my life. I wasn’t living with him, but he was in my life. And through sort of the separation agreement, I would see him fairly regularly. So he was somebody there that I could, when things got really bad, between when my mom was hospitalized, I could stay with. So I wasn’t being, you know, put into foster care.



Sue Smith: Well, that’s what I was going to say. It’s kind of remarkable that your mother was able to keep you.



Von Allan: And I really wonder about that. Again, it’s one of those things where, as a kid, I have memories of social workers coming into our house and our house was pretty crappy. Our apartment was pretty crappy. And I know I was embarrassed by it a lot. But these — strangers from my point of view — would come in and sort of evaluate. And I have no idea to this day; was it close that somebody was like, “this kid should be somewhere else?” Or was it not? I have no idea. It’s those things that — particularly when you’re a little kid or even just a kid — you don’t have the context unless somebody really sits you down and talks to you about it. And for the most part… I mean, my mom was pretty open about some of what she was going through, again, into my teen years. But things like that, I had no idea.



Sue Smith: Now, you’re a graphic artist and you wrote a book about it, which is featured in the film, “the road to god knows…”. How did that or did that help you sort of somehow process some of this stuff? Because this is like really tough stuff for a nine-year-old, a 12-year-old. Even as an adult, it must be hard to process.



Von Allan: Yeah, well, it was certainly tough to kind of revisit it. But in a way, particularly after my mom died and I sort of set out on drawing and what have you, I knew for was my first book — particularly for a first story — I wanted to do something that was really personal to me. And at that time, looking around, there wasn’t anything else like that out there. So I thought this might be the kind of story that’s worth telling.



It’s fictionalized. So the main character is a girl named Marie, not me. So it’s sort of a fictionalized biography or autobiography, but that allowed me to play with a bit of time and compress certain events. But yeah, for the most part, all of it is true, except for me fictionalizing some of my friends a little bit.



Sue Smith: Yeah, of course. That’s why they’re still your friends, probably. So one of the things that’s really brought up a few times in the film is how when you have a parent who struggles with mental health issues, that affects your own mental health as a child. How has that affected your own mental health or even just worrying about your own mental health?



Von Allan: Yeah, I think worrying. I’ve probably been lucky, and it’s one of those things especially with schizophrenia, as more data comes out, it seems to be more of a genetic disease than anything else. So I remember, particularly in my 20s, kind of wondering, because my recollections of my mom were lots of moments; like days, weeks, months of lucidity, and then ups and downs, really just bumpy and unpredictable. So very, very strange.



And also her sense of reality, particularly with that disease, was very, very tough. Certainly things I knew she told me didn’t happen, but then there were other allegations, particularly sexual abuse and stuff, that may have happened and may not have happened. It’s impossible to disentangle. And in that case, everybody is dead. So there’s just no way to know. And so for myself, particularly at that time, it was tough and I worried a bit about it.



But as you get older and you kind of navigate your own life and what have you, it’s okay. So certainly there are… Because with my mom, there’s a difference between being unhappy — being discouraged by events — and being devastated by them. And I have memories of my mom not being able to get out of bed. Like she just… I’d get up to go to school, get my own breakfast, off I go, come home, and she’d still be in bed. And it’s just there were… she had anxiety issues on top of everything else. And then when you throw in depression, she also had migraines. And then I think it’s important to say, too, is that her physical health — particularly into her 40s, and she died at 48; she died very young — that also started to play an increasing role in all of the difficulties. So she’s not only dealing with a mental illness and trying to navigate a social system and get the help that she needs. And she was able to do some of that. But then her nutrition was awful. She gained a lot of weight. I have vivid memories of… She lost teeth. So, she couldn’t smile properly anymore. So it was just… you throw all of this stuff together and it sort of means that your sense of dignity — your sense of self-esteem — really diminishes. And you’re getting hit from what you’re struggling with, and then you’re getting hit from an outside, all these other events that are happening around you, and particularly poverty. It’s really tough.



Sue Smith: I mean, all these things that you’re talking about — poverty, mental illness, and the kind of, you know, letting yourself go, fearing your own mental illness — these are all really taboo subjects. And you are speaking about them super openly. Why is it important? Why did you decide to do this? What do you want people to know?



Von Allan: I think the bottom line is that a mental illness — any mental illness — is just that. It’s an illness. It’s a disease. It’s like cancer. And the people who have it, it’s not because they screwed up. It’s not that they’ve made personal decisions and they haven’t taken personal responsibility for their actions. It’s dumb luck. And it’s bad luck. And I think the worst thing that people can do is be scared of it. And in a way, because of the way I grew up…



Sue Smith: But it is scary.



Von Allan: It is scary, but a lot of things are scary. A lot of diseases, a lot of things that go wrong with our bodies, in just the physical sense, can be really scary, can be really difficult. But it didn’t mean my mom was any less loving. It didn’t mean she was any less compassionate or empathic or anything. She was, in her own way, a remarkable human being. And I still find to this day the thing I find most unfair about it is she died when I was 20. So I never got to know her as an adult. I came to art late. She never saw me draw. I’ve been married for 20 years. She never met my wife. This stuff is… All of these things are the costs that any illness, but mental illness, can extract on people, on human beings, on families. And it’s tough. And it’s not fair.



The big reason to get involved in the film and do the graphic novel is to help share her story. And to tell people, ‘yeah, there are scary moments.’ I’d be lying if my mom didn’t scare me at times. There were really terrifying things. The spaghetti incident is one, you know. She basically lost it and went crazy for a little while. And I don’t use that word lightly, but she scared the crap out of me when I was about 11 years old. And started smashing things and what have you. But that was a very small microcosm of what her entire situation was. And honestly, when you go through this, it gets less scary. So the first nervous breakdown, very scary. You know, the first episodes that she had — schizophrenic episodes — was very scary. The fifth, the sixth, less scary. It just is. You get more experienced with it. And at the same time, I think the lucky thing for me as a kid, I was getting older. So it got easier.



Sue Smith: It’s just a really compelling story, Von. And you tell it in a wonderful way here in person, but also in the film. Thank you so much for coming in.



Von Allan: You’re very welcome.



Sue Smith: My guest is Von Allan. He’s one of three people featured in the documentary “I Am Still Your Child.” There’s a free screening of the film tonight. It’s at Oscar Peterson Concert Hall at 7 o’clock. That’s at Concordia [University], at Loyola [Campus]. There’s going to be a panel discussion with the cast and crew. Our Loreen Pindera is leading that. And it’s online. It’s part of our ‘Absolutely Quebec’ film series here of CBC Montreal. And we will tweet out that link. It’s really excellent.

Low-Beer Memorial Lecture Photos


As I noted in my last post, I was invited to participate in AMI Quebec's 2018 Low-Beer Memorial Lecture that featured I AM STILL YOUR CHILD, the documentary I'm involved in. The screening and subsequent panel discussion was held at the Oscar Peterson Concert Hall on Concordia University's Loyola campus in Montreal. It was a terrific evening. Possibly the best part for me was just being able to reconnect with so many of the awesome people who were involved in the film (writer/director Megan Durnford, producer Katarina Soukup, designer Sara Morley, as well as film participants Jessy Bokser, Marie Leavins, and Rebecca Heinisch). And to meet new people, including our fantastic moderator Loreen Pindera of the CBC and AMI Quebec's Dr. Ella Amir.

What follows are various photos of the event. These are courtesy of myself, I AM STILL YOUR CHILD's twitter page, and AMI Quebec's Facebook page. The panel (from left to right) featured Rebecca, Marie, Loreen, Megan, and me.

2018 Edith and John Hans Low-Beer Memorial Lecture photo

2018 Edith and John Hans Low-Beer Memorial Lecture photo

2018 Edith and John Hans Low-Beer Memorial Lecture photo

2018 Edith and John Hans Low-Beer Memorial Lecture photo

2018 Edith and John Hans Low-Beer Memorial Lecture photo

2018 Edith and John Hans Low-Beer Memorial Lecture photo

2018 Edith and John Hans Low-Beer Memorial Lecture photo

2018 Edith and John Hans Low-Beer Memorial Lecture photo


2018 Edith and John Hans Low-Beer Memorial Lecture


I'm very pleased to announce that the documentary film I AM STILL YOUR CHILD will be presented at the 2018 Edith and John Hans Low-Beer Memorial Lecture in Montreal on September 27th 2018. The film is presented by AMI-Quebec Action on Mental Illness. Even better, there will be a panel discussion on the film featuring myself, Jessy Bokser, Sarah Leavens, Rebecca Heinisch, and Megan Durnford, the film's writer and director. It should be a pretty special evening and I'm really looking forward to it!

Update! Charlie Fidelman did a lovely piece on the film and some background on the screening in the Montreal Gazette on September 25, 2018. 

Here are the specific details:

Thursday, September 27 at 7pm
Oscar Peterson Concert Hall
Concordia University
7141 Sherbrooke West
Free admission
Presentation in English

The poster is below. And a PDF of the poster can be found at http://vonallan.com/press/I-AM-STILL-YOUR-CHILD-lecture-in-Montreal.pdf

2018 Edith and John Hans Low-Beer Memorial Lecture

The film's trailer is below:


Glashan Symposium on Student Wellbeing and Mental Health

Glashan Symposium on Student Wellbeing and Mental Health poster

On April 20th, 2018, Glashan Public School hosted a symposium on mental health. I was invited by principal Jim Taylor to be one of the guest speakers at the event. It was a little daunting for a couple of reasons.

First, I'm actually a former Glashan student and, since my time at the school was not the happiest, stepping back inside was going to be weird. I literally hadn't been inside the school since I left it on my final day of grade 8. As it turns out, it was a "good" weird, but weird all the same.

Second, I was going to be talking a lot about my mom's struggle with mental illness. And since my mom died quite young, it was going to be emotional. On top of it, this is intertwined with my own memories if being a young teen while I went to Glashan.

It was, I'm very pleased to say, a very positive experience. All of the staff as well as the students helped me feel very welcome. I led two sessions of grade 8 students in a discussion about all of this. Probably about 30 minutes each, maybe a bit longer, plus a Q&A after. A number of kids approached me after each session to chat a bit more, too, which I take as a very good sign.

And if anyone wants to get a sense of what it all looked like, Glashan's Instagram page has a number of photos from the event. They're right here.

To prepare for each session, I made quite a few notes. I'm including them below (because, why not?) but the interesting thing is that I wound up not referring to them during the actual sessions. I felt comfortable enough and prepared enough not to need them. That doesn't always happen and I wasn't sure it was going to happen this time, but it did and I think (well, hope) that it means that it was a more natural conversation then a dry presentation.

Anyway! Here are my notes. A little stream of consciousness, but remember that these were here to help guide me if I needed them.

Starting with the Ending

I’m going to do something weird and start with the ending. So! My mom was diagnosed with mental illness when I was quite young. Maybe when I was around 8, but it may have even been earlier than that.

So, the bad news and the sad news was that my mom died quite young. 48, when I was 20 years old. It wasn’t her fault and it wasn’tfair. Life’s like that sometimes, but it can be very hard to place.I’ll get into the specifics in just a sec.

My mom was never able to recover or lead a normal life. I don’t really want to say “beat” or “defeat.” It’s not that simple. But she could never find the right mix of medication to help her lead the life that she wanted to lead.And as she got older, she got physically sicker, too. It was a double-whammy; she was struggling with schizophrenia and everything else and then her physical health declined, too. Partially because she was getting older and partially because it was hard for her to look after herself.

This can be an issue with mental illness; it’s hard, very hard, to exercise and eat right when getting out of bed is almost impossible. That made everything worse. She didn’t have a lot of “reserves.”

This is important: she didn’t make a mistake and get mental illness. She didn’t make a bad decision and get mental illness. It just happened.

But, at the same time, it wasn’t like it was always bad. The danger in talking about situations like this is that it tends to make them seem worse then in some ways they were. Compressed.

My mom wasn’t sick every single day. She’d have good days and bad days. Good weeks and bad weeks. And sometimes even good months and bad months. We did have fun together. And there were good times mixed in with the bad.

Beginning

I was born in Arnprior.

I’m an only child.

My mom and dad split up when I was around five years old.

My dad moved to Ottawa shortly after that for work. His health wasn’t great, either, but it was all on the physical side. A lot of surgeries and a lot of pain. And he was ex-military, so he and I had very different personalities.

My mom and I moved to Ottawa when I was eight.

I went to Mutchmor and then Glashan and eventually Glebe high school.

Through it all we were pretty poor. A lot of poverty. There was never much money and it meant everything was a constant compromise. My mom went to food banks. Declared bankruptcy. We were on welfare. It was pretty tough.

And slowly, over time, I was becoming aware, probably around the time I was eight or nine, that my mom wasn't like other moms; but I didn't really understand why. She was my mom. And I think, looking back, she probably tried to hide some of what she was going through, too. Until she couldn’t anymore.

My Growing Awareness

Only later did I realize that what she was going through had names. Mental illness. Schizophrenia. Anxiety disorder. Nervous breakdown.

These descriptions are not well-defined. And, to make it even harder, science is still figuring it out. So, “schizophrenia.” What does that mean? Practically, it means that my mom couldn’t deal with things very well. She’d hear voices. Her sense of time (hours, days, weeks) would be very distorted (she’d say something happened yesterday that happened last month). Her thinking could be very confused. It was very hard to know if what she was saying was true or just what she thought was true.

What about “anxiety disorder?” Well, sometimes she’d get very, very worried and have a very difficult time calming down. She would imagine the worst (often involving me), focus on it, and be unable to imagine anything positive. This could go on for days.

What about a “nervous breakdown?” Well, generally it means that someone just can’t cope anymore. But what does that mean practically? In my mom’s case, everything became so overwhelming she’d be almost paralyzed. In these cases, she’d check herself into the hospital and get help. I can’t imagine the courage that must have taken. And how scary that must have been. She wouldn’t have known how long she’d be there. She wouldn’t know what would happen while she was there or when she got out.

And, to make it worse, she was also on medication and that would have an effect on her, too. Sometimes she’d be very, very dopey. Sleepy, but more than that. Other times the medication would work great and she’d be herself. It was just very unpredictable.

And, of course, it meant that my childhood and teenage years were pretty different from a “normal” one (whatever that might mean).

And there wasn’t much support. My grandparents and aunts and uncles didn’t understand and didn’t help much. My dad was there, to a point, but he didn’t understand, either. We’re not close, but to his credit he did help, especially when my mom was hospitalized. I could stay with him for a few weeks and that gave me some stability. There also wasn’t much government support (aside from welfare) and there wasn’t much in the way of education.

I also felt ashamed. It was hard to be poor. Hard to be embarrassed about my mom and my home. I rarely invited anyone over. And it was hard to fit in. It was hard to afford nice clothes, good school supplies, and all of that stuff.

It also meant I was pretty shy. Shy, quiet, poor, fat. So there was bullying and whatnot, too.

And sometimes it was hard to go to school. It felt kinda surreal compared to what was going on at home. Managing as a student was really hard sometimes. You need to have homework done and you need to be in school and all of that stuff. I’m not saying that school isn’t important, but there were times I’d get home from school and my mom hadn’t gotten out of bed all day. Or there were a few times on a school night that she passed out and I was picking her up off the floor. And then, of course, there were the times she couldn’t function at all and wound up being hospitalized. Or times where she just couldn’t function but wasn’t hospitalized. That meant she couldn’t be a mom. And there were times where she wasn’t even herself. Like a stranger had taken over.

Compared to that, things like homework didn’t seem that important.

Confusion and Stress

In my case, there was also a lot of confusion. No one really ever told me anything. And I didn’t know what questions to ask or even who to talk to.

There weren’t any supports at the time. Or at least none that I was aware of. It’s hard to know what to ask for when you don’t have the right information. Or who to talk to. Or who to ask. And remember this was pre-internet. I didn’t know who to turn to and there wasn’t anyone I could really ask.

No one really explained it to me; my mom tried, but it was very hard to understand what she was going through. It was pretty scary and it left me feeling very insecure and shy. This also meant that I didn’t talk to anyone about it, so no one knew what was going on.

Other parents didn’t know because I didn’t tell my friends. Teachers didn’t know, mainly because there weren’t any teachers I felt really comfortable about talking to. And I didn’t talk with guidance councillors because I never really trusted them.

And I was scared; what if I talked to a parent or teacher about this stuff and then they called social services? What if I was taken away from my mom? I loved my mom and I didn’t want to be separated from her.

Epilogue

But...the weird thing about this is that in some ways it got easier as time went on. What do I mean?

Well, at first I didn’t know what was going on and I was scared. A lot. And unhappy. A lot. And stressed. A lot. There was tension all the time, mainly because my mom’s struggle with mental illness meant that, emotionally, she was really up and down.

But slowly, I got better at taking care of myself.

The big thing that helped me was escaping. Just being able to read books or comics and kinda lose myself in them for awhile. Hang out with friends, playing games or watching movies or whatever. And exercise helped, too. I started doing a lot of biking.

Basically, getting away from it sometimes and learning to give myself a break.

I don’t mean running away. And I don’t mean pretending that everything was okay (though I did some of that). What I mean is just finding some joy, some happiness, and taking a break from the crap that was going on around me. I realized that I had every right to be happy.
Also, my mom did start talking about it, on her good days, sometimes. She was seeing a psychiatrist and was more open about what was happening with her. And she had a lot of hope.

And I got more experienced. The first time she was hospitalized was very scary. But it got less scary as it happened a few more times. I started to have a better sense of what to expect.

I realized, and this was hard, that I couldn’t fix this for her. I could support her as best I could. I could love her and be there for her as best I could be, but I couldn’t fix it.

And I started to understand that the mental illness is just that: an illness. It wasn’t my mom’s fault.

And, you know, my mom was a pretty amazing person. She was very kind, very loving, and very courageous. She liked to read. She taught me a lot about life, about being thoughtful and compassionate. I didn’t doubt, through it all, that she loved me. And she was a teacher. Despite all the ups and downs, I consider myself very lucky to have met her.

And you know, I started to realize that mental illness isn’t that scary. Yes, there are scary moments. Sure. And yes, it can be weird. And yes, it can be really frustrating.

Again, mental illness is an illness, just like any other illness. Science and research are getting better and better all the time. If someone was in my mom’s situation now, there’s now a whole range of options that weren’t there for her. So there’s a lot of hope.

A really good example is here, right now. When I was at Glashan, an event like this would not have happened. It just wouldn't have.

A lot of things are changing for the better. How we, as a society, approach mental illness. How science treats it.

It’s really amazing. We have a long way to go. There is still stigma and resource issues and all of the rest. But there's a lot of hope. And a lot to fight for.

Wolf's Head by Von Allan

Link to Von Allan's Wolf's Head comic book series

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