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.
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.
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.
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.
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:
“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.
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.
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.
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!
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.
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.
As I noted in my last post, I was invited to participate in AMI Quebec's2018 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.
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.
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.
![Glashan Symposium on Student Wellbeing and Mental Health poster](http://vonallan.com/press/Glashan-Symposium-On-Student-Wellbeing-and-Mental-Health-2018-poster.jpg")
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