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Family Guide Interview: Karen – Family Member (Daughter) & Lived Experience
In her own words….
I am from a family who experienced mental illness, and I am a person with lived experience having experienced my own battle with a severe mental illness. I am also a professional in the field, supporting to families. So I’ve played all three roles.
My Experience As A Daughter
The first time I ever knew anything was wrong, I remember coming home from school one day and back in the day, not to have my mother in the kitchen was a bit astonishing. Eventually, I found her lying in bed fast asleep at 4 o’clock in the afternoon and that signaled the start of decades of baring witness to my mother becoming severely, severely ill.
She was a dynamic, outgoing, vivacious, friendly, accomplished woman who simply started to fade away. I often use the term, like a coloured photograph turning into sepia and just fading away. When she wasn’t asleep she was crying and when she wasn’t crying she was sobbing and yelling and screaming.
This went on for years and years. And from the vantage point of being a child it was confusing. It was frightening. In many ways it was embarrassing because my friends’ mothers didn’t behave like this. My mother attempted suicide on three different occasions and twice I was the one that found her. The last time that she attempted suicide I was 20 years old. It was three weeks before my wedding day and I remember thinking even as a young adult, ‘how can you do this to me?’ The perspective that I’d developed as a child and living through my teenage years and my young adulthood was the perspective of ‘why can’t I make you happy? Why I can’t do something that will stop the tears? What have I done that’s made you so unhappy that you’re going to kill yourself?’ So for me, growing up like this; from a child into adolescence, into adulthood my reaction was bewilderment, fear, blossoming perfectionism & overachievement. It wasn’t good enough to get an A if I got an A+ maybe then I would make my mother happy.
What pervaded my life through all those years, even more than those feelings, was the silence. There was a cone of silence in our family that never was broken. Even in periods when my mother was relatively well we never talked about what was happening. It was never given a name. It was never given a label. It was never given this place that you could say ‘oh, this is what’s wrong.’ I remember one aunt saying ‘well your mother is sick’ and I might have been about 8 or 9 and I remember thinking can I catch this. It was a little bit of foreshadowing in that but at the time I thought well if someone’s sick it’s like a cold or the flu. You can catch it.
So as I went into my adolescence and my adulthood, my perspective for me was whatever I have to be, whatever I have to do, whatever I have to achieve, as long as I don’t ever become that, I will do it. And that’s exactly what happened. I became the exact opposite of the depressed person; the ill person; the sick person. And so I became the best in school and the cheerleader and married well and everything that wasn’t a sick, depressed and crazy person. It wasn’t until I became sick myself that I really began to finally understand my mother.
The post-script to the story is that in about 1960, my mother came into the care of a very prominent psychiatrist at that time and this thing that had pervaded our lives for decades was given a name and the name at the time was “manic depression”. And my mother was one of the first people in this country to be tried on a cutting edge treatment called lithium and this past summer my mother celebrated her 96th birthday still taking her lithium, smart as a whip, truly an inspiration.
But if you asked me as a 16 year old, was she inspirational by the courage she showed everyday getting out of bed, I absolutely couldn’t & wouldn’t have called her an inspiration, on the contrary. I think from the ego-centrism of childhood and youth I was ashamed of her.
My Lived Experience With Mental Health Issues
As I said, I did everything – I married right, I had a great career, two beautiful children, a girl, a boy, a beautiful home in the city, beautiful place in the country, loved to dance, loved to ski, loved to make dinner parties, great cook, blah, blah, blah.
And what I often say in presentations is that clearly by any objective standard including my own, I had nothing to be depressed about so I was operating on the notion that whatever depression or anxiety or bipolar, whatever it was – had a kind of cause and effect. Something bad happened. Well then you had an excuse for falling apart and being depressed. There was nothing in my life to be depressed about.
Now what I wasn’t paying attention to was the chronic stress that I was under in being in a very unhappy marriage. But that was kind of all I knew. So you just lived with that and you just did everything else and carried on. So for me, given that there was nothing to be depressed about I just carried on living my wonderful life to its fullest and in about the mid 80’s, if you asked me what was different, there was no cataclysmic event, there was no trauma, there was no huge loss or death in the family, there was nothing; I just started to feel lousy.
How do you describe what lousy feels like? I was tired all the time. I increasingly not wanted to be with people and pulling back. Whatever it was, I just felt tired and not sleeping well and sleeping too much. And teary; ‘everybody is bugging me’. And I think because what I learned as a child, that was anything but depression. It was the dog. It was my career. It was something that happened at work. From the inside out there was a lot of attribution. It’s that, it’s that, it’s that. And for me there was more because I wasn’t one of those people. I wasn’t a sick person.
So I went for close to six years before I would even acknowledge that anything was wrong. I’d go to work, I’d smack on the makeup, I’d comb my hair, I’d put on a great show and what’s interesting to me is that I meet people now who say to me ‘I never had a clue,’ it was only when I saw you on a television show or an interview that I had any idea that anything was wrong with me and I sure as heck wasn’t going to tip anybody off. In about 1988 I went to my first doctor and that doctor said to me you’re clinically depressed and I think you’ve been depressed for over 12 years and you’ve haven’t done a thing about it. It’s time to stop now. It’s time to recognize.
And I wasn’t having any of it. I’m not ‘a sick person’. I’m not a ‘crazy’ person. I’m not a ‘depressed’ person. And I was married to someone for whom my illness, later diagnosed, was somehow a common commentary on the fact that I didn’t love him enough. My not loving him, this was my way of expressing that in some weird kind of way. So it took another two years before the illness went into probably as acute a phase as you can imagine.
For the next ten years I spent most of ten years in psychiatric hospitals, psych wards, hospitalized 17 different times, shortest period of time was five days the longest was six months. I was tried on twenty-seven different medications; anti-depressants, mood-stabilizers, anti-psychotics, atypical anti-psychotics, anti-convulsions, anti-epileptics, cocktails of medications. I had 24 ECT treatments, shock treatments in less than two years and I had so many treatments at the time in such a short period of time that I was left like a stroke victim. So I lost literacy, I lost numeracy, I couldn’t add, I couldn’t subtract. I didn’t know what the numbers on a telephone are for. I didn’t understand what it meant to write a cheque.
At the time I was a senior policy analyst, so I was someone who was making my living on my intellect. So in addition to being desperately ill, I was terrified that I would never be able to make a living again. Never be gainfully employed. The medications would sometimes work, mostly not. They would work for a while and then I would go into another serious episode.
There was not a time in those 12 years, not a single day that I did not pray for death. There was not a single day that I didn’t know, and I always stress this, when I didn’t know, not think or feel but know, that my children would be better off with me dead. And I often think about how distorted your thinking has to be to know that somehow your death would be your gift to your children because then they wouldn’t be stuck with this hopeless, useless, piece of dirt. It was only then, when I attempted, when I had daily suicide-ideation that I began to understand my mother and not that maybe she wasn’t doing it to me, she thought in some perverse way that she was doing it for me. That was pretty astounding to me.
Defining My Condition
In the beginning, I could not explain it to myself. I thought, I’ve put on weight. I’ll go on a diet and I’ll feel better because a lot of women kind of do that. They’ll always say if I could fit into a size 10 pant then I’m good to go. I explained it that I was married to a jerk. So that’s got to be it. I was married to a jerk and if I was not married to a jerk I’d be happy. There were all kinds of ways to explain it.
When it got to the point where I could not go to work I could not get up in the morning and go to work even without explanation I thought I got to get to it. I honestly thought I must have anemia or some vitamin deficiency because why am I so exhausted all the time? Why is my thinking so muddled? Why am I so upset all the time because I’m sleeping too much, I’m not sleeping enough, a lot of it I was preoccupied with the whole sleep thing. So I thought ‘I’ll go to a doctor’ and the doctor I went to saw me for literally five minutes and said I’m sending you to a psychiatrist. When the psychiatrist said ‘you are clinically depressed and I think you actually need to be hospitalized’ the penny dropped. The penny dropped. It had a name and I didn’t like that name at all. I didn’t like it. But increasingly the name can give you some solace.
One of the things I talked a lot about at Mood Disorders Association was that we’re still as a society, we’re very afraid of the label and the name and we use lots of euphemisms and we say MH challenges and MH concerns and we sort of dance a little. I think for some people the actual the name is this small sort of life preserver; well at least it’s got a name.
The Role Of Family Members
I had a wonderful psychiatrist, I had six different psychiatrists all of whom were trying very hard to make me well – it wasn’t that they weren’t giving it their best shot.
The illness is so perverse that I intellectually knew that other people got well, I knew medications, therapies helped other people to get well. But what I knew was that, somehow, even though I had that illness I would never get well because that’s what the illness tells you. ‘You’re the one, you’re different, there is something inherently wrong with you, that you will never get well’. And that has shaped my feelings about what family members are all about on this journey because people could say to me morning, noon and night, ‘don’t give up hope’, that would be like speaking to me in Swahili because that is the definition; it is the loss of hope. So it didn’t matter how many of my family, my friends, my co-workers; my loved ones who eventually came to know what was wrong. It didn’t matter that they said ‘don’t give up hope’ because there is no hope. So that changes the role of family members.
I remember one doctor saying very aptly, ‘you know, saying to someone with severe depression not to give up hope is like saying to someone with a crushed leg not set, not casted – to ‘get up and dance, go on, get up and dance, I don’t see what’s wrong with you. Get up!’ You can no more do that on a crushed leg than, in the throws of a horrible, debilitating mental illness, stay hopeful.
So if that hope is gone then somebody else has to hold the hope for you. They have to be the keeper of the hope and never, ever give up on you. Because much of the time that I was sick I gave up. ‘I can’t do it’.
I remember saying to my sister ‘you would never let an animal suffer like you’re letting me suffer. You would put an animal out of their misery. How, with quite a bit of anger, how can you let me suffer like this?’ And every single time she’d say; ‘we will never give up on you. Ever. Ever.’
My Family Member’s Reaction To My Illness
In terms of my own family members, I think I have to set the context that I had continued to perpetuate the same messages of secrecy and shame and embarrassment.
As many people that pulled away, I pushed away. I didn’t want anybody to know. I didn’t want anybody to visit me. My kids, by the time I got very ill, were already out of high school and going into university and they went away and that’s the way I wanted it.
My husband wasn’t having any of it. He hated psychiatrists. He thought that they were filling my head with of all kinds of nonsense and all kinds of anti-marriage messages. He thought that every time I was hospitalized I was making it up so that I could be away from home.
I would always, when the medications started to work, get a little better and try and get my life back. Feeling normal again. Feeling like everybody else again. Feeling like I’m not some strange weird beast again – very important.
So I would go up to our chalet. I would try and make dinner for friends and so on. And one time I had a couple of couples in for dinner and I made this very good dinner I must say. It was one of those glorious winter nights when the fire is in the fireplace and it is just warm. And these were very close friends. And I had never talked about my illness to anybody. I had never opened up. They had never visited me. But for some reason I guess I just felt safe.
I felt safe enough that I was telling a funny story about something funny that had happened on the psych ward and my husband was sitting next to me, and by the way, the people laughed – because it was funny.
My husband was sitting next to me and he grabbed my wrist very firmly under the table and he sort of leaned into me and very angrily said; ‘must you air our dirty laundry in public?’ And nothing happened. I didn’t say anything, nobody else said anything, the evening kind of limped to a close because it was so awkward but I remember thinking in sort of the days, weeks and months that followed that somehow I had learned a lot about serotonin and dopamine and derapernephrin, somehow a change in the neurochemistry of my brain rendered me dirty laundry but the biggest revelation wasn’t that I was a shameful secret to him it, was that I was a shameful dirty secret to myself.
And I think something in me started to shift somewhat because even on its surface it doesn’t make sense. If I had a change in body chemistry, in cellular chemistry and I had cancer, even if I had a change in brain chemistry caused by cancer or Parkinson’s disease, the world would come in with cards and letters, teddy bears and tuna fish casseroles but my change in neurochemistry was a mental illness and so people pulled away. I think my husband was incredibly stigmatized by my illness.
My closest friend in the world, my sister took a completely different tact. She basically said ‘what do we do? How do we do it? What do I have to do?’ She was the one who visited me constantly – even when I didn’t want her to, even when I was angry, even when I was in such despair that her very presence (made me angry). It didn’t matter to her. ‘I am always going to be here, I am always going to fight for you, we are never going to give up, never, we will find the right medication, we will find the right doctor, we will find the right treatment.’
My kids, I didn’t know at the time how they felt because most of the time I was hiding it from them. Most of the time I found evasive actions, ways that they didn’t have to see me. It was only later when I did a documentary called ‘Fighting the Dragon’ and they interviewed my kids that I found out that for my daughter, she just couldn’t understand it. I think she said ‘here was this women who was fighting city hall and changing the world and larger than life and then she was having shock treatments.’ So for her there was this great disconnect. I learned later by my son’s refusal to talk about the illness and the career that he eventually went into, which was corrections, that he was much more traumatized.
He, probably being younger, was much more, like I was in a sense, just ‘who are you? What’s wrong with you?’ And even though he is a psychologist in corrections and we talk about the incidence of mental illness in that population, I can tell you now, years and years in recovery, he is still much more reluctant to talk about my mental health or his mental health.
I think I made some real mistakes by not including him in the conversation at the time but I think we learn that with our kids because we try to protect them from our financial problems, from our marital problems, we think we are protecting them. But what I learned is that we’re not really protecting them. We’re giving them more to be worried about; more to find their own answers, and fill in the blanks. When we’re not forthright or at least more forthright than I was. And I think my son and I will always have a little bit of that between us.
To this day my mother will say ‘I don’t understand’. ‘I don’t understand how you (could get a mental illness)?’ And she understands quite well about mental health issues, but she cannot grasp that with my personality, somebody like me, could ever get sick. My brother has been chronically ill for over 30 years with depression. And somehow she gets it. She can accept it in some way. But because I was so kind of outgoing, my personality was different, even when she would visit me in the hospital, even when she was witness to my own suicidal dealings, she would say to this day ‘I don’t understand. Not you. Anybody but you.’
Recovering My Health – and Getting Involved With Families
Well what happened to me in terms of recovery I have to say is very unusual. When I tell people, I’m always cognizant of the fact that this is not the norm. I was in hospital – I was on suicide watch. The doctor in the hospital said, ‘we’ve sort of run out of ideas for you. But if you want, you can be on a clinical trial of a new medication, it’s an anti-depressant, it is not available in Canada but it’s used a lot in Europe and you’ll be one of 12 people in the country, this is the first round of clinical trials.’
You know, when you’re this sick and this hopeless it doesn’t matter what they say to you, it was like ‘fine, what’s the difference, because nothing’s going to work’.
They gave me that medication on the evening of August 27, 1997. It had a sedative quality so it kind of knocked me right out. I went to sleep and at 8:27 on August 28, 1997 I woke up and I looked around and I remember looking outside and I knew with 100% certainty that it was over. That it was gone.
What I later learned I’d experienced was something called spontaneous remission, which is extremely rare in medicine and even more rare in psychiatry. I believe its 0.001% of the population.
The medication is Remeron. It’s one of the many anti-depressants. When I tell people at presentations, you can see half the audience go ‘ah psst! I was on that and it didn’t work for me!’ Because that’s what we know about these medications; it will work for some people and it won’t work for others. And my treating psychiatrist came flying up the stairs. He asked me a half a dozen questions and he said ‘let’s get you out of here.’ I walked out of the hospital on August 28, 1997 and was given me back. Given my life back.
I continued to take the medication for close to 15 years. I would still be on the medication if it weren’t for other health issues. About a week later I went to the psychiatrist and I said ‘I need to do something. I need to do something. I cannot take this, what’s been given to me, and not pay back something. The karmic debt repayment plan. Tell me what I can do.’
He said ‘well, I know you are a good speaker so do you want to come to talk to some other folks at day treatment programs?’ So I came and I spoke and someone from the Mood Disorders Association heard me speak and said ‘would you come and speak at a group?’ and so I did. ‘Do you want to speak at a conference?’ and so I did. And well you know how volunteerism is, ‘would you like to be a volunteer?’ Sure. Would you like to be on the board of directors, as they are kind of roping you in? Sure. Do you want to be the president? Sure. Would you like to take a 25 thousand dollar cut in pay and become the executive director?’ and I said ‘I’m crazy, why not?’
And so I left my very well paying job and went into the Mood Disorders and it was like I’d been on this long journey my whole life to come home to this place. That is where I needed to be because of where I’d been. There would have been no other place where I would have had this profound sense of why I had to go through that.
What I’ve Learned From Working With Families
I think two of the things I learned the most were;
One: people are extraordinarily resilient. I’ve traveled across this province talking to people and I always say there is no competition of pain but honest to good God, people have suffered, suffered so. And they have transcended. They have crawled through it. They have come back into the light. Not just the person with the illness but the family has come back into the light. The resilience that people show has been absolutely overwhelming to me. I am in awe of how resilient people are.
The other thing that I’ve learned is that this is not an individual illness. This is an illness of a family. I say rather flippantly ‘never under estimate the capacity of Mental Illness to tear families apart’. And people suffer; people suffer. The person with the illness is suffering but I’ve learned from being a mother and a grandmother, again, I always like clichés because somewhere there is truth in them that ‘you are only as happy as your unhappiest child’. If your child is more than unhappy where are you? Where are you? And that’s why for me I stress so much that we don’t need more sick people; we need strong people. These illnesses can tear families to shreds and we have to work really, really, hard to keep them together.
The Culture Of Mental Health – Emerging From Silence & Stigma
When I was growing up, mental illness was not talked about. There was no vernacular. There were no movies. There was nothing in the media. There was nothing in the press. There was no discussion. I don’t think we even had language for it. So it just wasn’t talked about.
Now whether it was talked about among extended family about my mother, whether it was talked about in her group of friends or not I couldn’t really tell you. But I can tell you I cannot remember a single person ever talking to me about my mother. Even when I was 18, 19, 20, 21, there was truthfully a cone of silence that just surrounded this thing. It was like the invasion of the body snatchers. There was never anybody who said ‘do you want to talk about this?’ ‘How are you doing?’
I sure as heck never talked about it to my friends. I mean you could have put me on a rack and I wouldn’t have talked about this to my friends and honestly when I look back at that now I am not embarrassed and ashamed about my mother, I’m embarrassed and ashamed about me because I just didn’t know. When I look back at the courage of this women to get up everyday and make breakfast for her three children, to go to a wedding or a bar mitzvah or something, when I look back now I think ‘how did you do that? How did you manage to do that and still be so sick that you attempted to take your own life?’ It wasn’t until I attempted to take my own life that I actually got it.
I think the stigma in society has actually changed a little. I think we’re less ‘oh my God, I’m worried that you’re mentally ill.’ Or ‘I think you’re a terrible person.’ I really do think that we’ve come a long way.
Where stigma still exists, if that’s the right word is that – now we see someone struggling, a loved one, a friend, a co-worker and we’re afraid to say anything. We’re afraid, I think there is a part of us that is afraid to open a can of worms, we’re afraid that they are going to tell us something and we won’t know what to do with it, but I honestly think that our basic human nature is to want to help. I really believe that and I think we’re afraid that we’re going to do or say the wrong thing that somehow because we’re not psychologists or psychiatrists or social workers, we’re going to say something that is going to make you worse. My experience is just saying something makes it better. It acknowledges that you exist; that I’ve heard you. These illnesses by their very nature are very egocentric and they are very isolating. For someone to say ‘I care about you, I’m worried about you, I’m here for you,’ I don’t know that we can measure what that would mean to some people.
People say ‘well what should I say?’ and well what would you say if they have blocked arteries. ‘What can I do to help you? I am so sorry you’re going through this. I am here for you.’ What would people say when somebody has any kind of illness? They would say ‘I’m sorry, how can I help you?’ And you have to know that what differentiates these illnesses is that the reaction might be the same as if you have cancer. It might not be the same. It might be ‘I don’t want to talk about it, whatever’. We have to get past the fear that we’re going to make it worse by saying something inadvertently. We are not. You don’t have the capacity to make it worse unless you’re a really terrible person who is going to say some awful things.
Advice For New Families
A couple of pieces of advice, first and foremost;
If you are a family member you must never give up. First and foremost you must be the keeper of the flame. You must never give up. You must immerse yourself in knowledge and understanding the same way you would with any other diagnosis of a health problem. When family members say to me ‘I don’t know what to do.’ I say to them ‘what would you do if there was a diagnosis of cancer? What would you do?’ I’d learn everything there is to learn about it, I’d go to reputable sites on the internet, I’d read, I’d find the best care. Why would this be any different?
You must never, ever, ever, give up. But your loved one is in a battle for their lives, there’s no question. This is a battle for their lives. Which means that they need warriors. They need soldiers.
If you get sick, then we have now two sick people. We have the person with the illness and then we have someone who is so depleted and becomes so unwell that they’re not there to keep fighting which means, sometimes, you need to say; ‘I can’t do this now. I need to take care of a fellow soldier. I need not to listen to this tirade. I need not to be involved. I need not to be dragged down’ because it is very seductive to become a professional caregiver. To have it take over your whole life. To become just the way we say the people with the illness, ‘you are not depression, you are not bipolar disorder, you experience it, you have it, but you are not it’. With family members you are not just your loved ones care giver. That is not you 24/7 which means that sometimes you need to say ‘you know what? I need now to stop. I need to replenish myself’ and that is a very hard message to hear.
When your loved one is suffering and you could go in there and donate serotonin out of your own brain you would do it. Sometimes you just have to say, ‘that is not acceptable, I won’t take that and I need, as hard as it is, just to pull back for awhile’.
I certainly don’t have the wisdom of the sages so I have to borrow my wisdom from other much wiser people but I have to say I do really like what Winston Churchill says and he said ‘when you’re going through hell, keep on going.’ There will be times in this journey when you’re going through hell and who knows, you might be one of the lucky families that gets off easy or easier but you’re probably not reading this if it’s easy, you’re probably reading this if you’re in difficult straights. You have to keep going.
It doesn’t matter if your loved one has been in the basement for three years, you have to keep going. You have to keep believing.
I have said to people who have come to me in their suffering and said ‘I will never get well because I have been on…’ And I can look them in the eye and honestly say ‘you will get better, you will.’ I don’t say it as an aphorism, I don’t say it because that is the thing to say, I say it because I believe it; I believe it. What I can’t tell you is, I can’t tell you the timetable and I can’t tell you what it is going to take. I can’t tell you what unique combination of treatment, medication, therapy, yoga, taking a drawing class… I can’t tell you that. But I can tell you; you will get better. I can tell every family member; this will get better.
The other thing I’ve heard, I don’t know who said it; ‘things change.’ They change to this very bad place and they will change back.
The only other thing that I would, again borrowing from somebody else, is Maya Angelou is well known for having said to her friend Oprah; ‘we all do the best with what we know and when we know more, we’ll do better.’
If we do not decide, consciously, that we will talk to each other, we will talk to our loved one, we will talk and learn and listen, how will we know more? How will we do better? How will we know the latest treatment advance? How will we know a helpful bit of advice for the kid that won’t come out of the basement?
Ask: ‘What did you do? How did you do it? What did you learn?’
If we don’t say we’re going to talk about this and talk about this and talk about this and create those safe places to talk, how are we going to know more?
We have to keep talking. Like we are now.
Taken from a filmed interview with Karen for The Family Guide to Mental Health Recovery project. Interviewer questions have been deleted.
Edited by Sarah Shelson & Stuart Clarfield for The Mission Media Company Inc.