Sometimes the stories are difficult to hear. Maybe the stories are too close to home; maybe the stories present a reality we’d prefer didn’t exist.
And it’s so unpleasant—talking about chaos in the home and grief parents experience watching their child change as the illness manifests. The ugly scenes! The awkward moments! And worse, some die as a result of behaviors or disordered thinking brought on by the illness.
Maybe if we don’t talk about it, it will go away.
May is Mental Health Awareness Month and those of us who live with a brain disorder, or have a loved one who does, will be talking about it. We make some people uncomfortable. But we need to talk about it to give hope to others. Yes, that’s right, hope.
Since publication of our book Behind the Wall: The True Story of Mental Illness as Told by Parents, a collection of true stories, my co-author sister, Elin Widdifield, has been approached by friends and acquaintances who say, “I had no idea you were going through so much. I’m sorry.” Elin appreciates this concern and knows it comes from a genuine place, but we didn’t interview other parents to garner pity for them. None of the parents, Elin included, want pity.
In the words of Esme, one of our contributors, the reason for telling one’s story is to simply help another parent. “If I can just help one person, it will be worth it.”
Telling one’s story, and listening to others, is wisely encouraged by the National Alliance on Mental Illness (NAMI). The act of telling and listening is informative and healing.
There is chaos, danger, and even death in the stories told by our Behind the Wall Parents who have witnessed their child’s illness unfold. That is reality. Sometimes a loved one doesn’t reach recovery. Sometimes they do. But why does anyone really need to embrace this brutal reality? Why shouldn’t we just go about our merry way, talking about celebrity mishaps and what Emeril is making for dinner?
Because one in four adults have been diagnosed at one time in their lives with a mental illness. One in seventeen lives with serious mental illness such as bipolar disorder, severe depression, severe anxiety, schizoaffective disorder or schizophrenia. And their loved ones are impacted also.
A person living with untreated mental illness creates tremendous chaos in the home and in the lives of his or her loved ones. When a person is out of control—has frequent rages, runs away, uses drugs, or all of these things—it can drive families into isolation. Parents in this situation feel that no one else can possibly understand what they are going through. Adding to feelings of isolation is that parents are often harshly judged for the “bad behavior” of their child. Stories illustrate that a child’s extreme behaviors may possibly be a sign that treatment is needed. Sharing how parents overcame the isolation and chaos helps others to not feel so alone. When a parent has no idea how to help her child and begins to lose hope, stories about celebrities don’t help. Stories about others who share their experience offer hope.
Talking openly and honestly deflates mental illness stigma that is usually the barrier for many who desperately need treatment. Stories show it can get better with evidence based treatment. Describing outcomes without effective treatment (self-inflicted harm or even death) or with effective treatment (a fulfilling life), illustrates that seeking professional help is not a weakness but an act of resolve, strength and requires hard work and a willingness to change.
But there are actions a parent or loved one can take to more successfully cope and to increase chances for recovery for a loved one: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible.
Talking about mental illness informs others that there isn’t really anything specific that causes it. But there are actions a parent can take to more successfully cope and increase chances for recovery for their child: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible. Talking honestly about recovery, a parent/advocate can learn there will be setbacks and it isn’t anyone’s “fault” nor is it the end of a chance for recovery.
But why do others need to know so much about mental illness? Because if it doesn’t run in your family, why should you care?
Brain disorders runs in families but impacts society. Encouraging early intervention, which increases chances for recovery, and community based programs with evidence based treatments, make more economic sense then waiting for a person to endanger themselves or get into a tangle with the law, or worse.
Our communities need to be inclusive and support those working hard to manage serious mental illness. Many of our most successful citizens live with mental illness. They just don’t talk about it.
The question is, why aren’t we making all the months Mental Health Awareness Months? Well. We are.
Thank you for visiting our blog. As always, we welcome your comments.
We are pleased to have this contribution from guest blogger, L. M., whose daughter lives with bipolar and borderline personality disorder, and substance use. The illness began to manifest when her daughter approached adolescence and continued into early adulthood.
Parenting a child during a mental illness is like being in the midst of a tornado. At first you have this beautiful person; an angelic child who gives you more joy than you’ve ever experienced. Life is beautiful through her eyes. Then one day, you feel a breeze approaching. It’s not unexpected although at times, it approaches in unexpected gusts.
It doesn’t feel unordinary. Perhaps changing patterns in the weather as the seasons shift. Then the breeze evolves into a wind. A steady, increasingly fierce wind. The wind starts swirling. You are swept up inside of it without a warning. You try to find your way out. But each gust pushes you in a different direction. Soon you lose your way. You doubt the path you should take to break free. Your confidence is shaken. Your compass is broken. You ask for directions but the answers are varied and jumbled. You find yourself running in circles wondering how to escape. But there is no escape. And the circle closes in. Finally, you manage to find a break in the force of the wind. You lift your head, wondering how you got swept up. What caused it? When did it all happen? Was it my fault? You look behind at the debris. The damage is immense and widespread. Your head is still swirling. How can you pick up all the pieces? And what will fit back together when you do? The form you had envisioned can’t take shape. It no longer exists. What to do next? Change the pieces. Make them clay. Let the clay be the new day. It may change every day. It may change every hour. You learn to accept the volatility, the constant morphing of a life you once thought was a straight line, a fixed object. And you observe. You listen. You learn. The tornado swirls, but you step aside. You let it be. Let it unfold on its term without being swallowed in the center. it’s the only way.
Our guest blogger tells us how challenging it is to live “in the moment”.
I hold my breath waiting. Panic stuck in my throat, wondering if this is beginning of another crisis my son is creating. Is he going to experiment and lower with his meds and become manic? Will it be like the time he became manic and paranoid?
That time, after alerting the police that the CIA was watching him, he threw out all his trophies, awards, photos, well-written essays, things representing highlights from his past, from before he became ill. Later, I was able to retrieve most things, buried deeply in the garbage and sludge-covered. He packed the essentials: a gallon of sterile water, one change of clothes, sketchbook, a few dollars and not much more. He set out to live on the streets so the CIA couldn’t study him. My two sisters and I drove down every street downtown, tracing the path to his familiar haunts, hunting him down as if he were a runaway puppy.
We found him, euphoric, ready to enter the homeless shelter. He admitted he hadn’t slept in a week and needed help.
The chaos he has created in the past stems from his decision to walk into a bar and drink a beer, and his distorted notion that he is a ‘normal guy’ who can drink a beer. One beer, and be fine. But for him, one beer leads to a weeklong, or months-long binge, blackouts, ruined relationships, lost job, failed college semester, and all this followed by shame and guilt, and the long haul of putting it all back together again.
So, I would hold my breath waiting, knowing what had been built could all fall apart. In one beer.
But while holding my breath, I forget the gratitude for the previous three years of calm and serenity his recovery has brought to our family. I forget gratitude for the hard work and day-to-day struggle that is his, just to live a meaningful life with solid relationships, work, and balance in his life. I forget how much work he does to earn a moment of joy, and happy family moments.
It’s not healthy to stop my life, become paralyzed in fear…
It’s not healthy to stop my life, become paralyzed in fear; I know this. And I’m not fun company. I’ve watched my husband sleep, eat well, go to the gym, work, and put his worry into neat compartments that only occasionally leak out. I will never know how he has been able to do this, but we are all different.
At the Al Anon meetings they tell me to let go and live my own life. Of course I know this is what one should do, but letting go and taking care of myself requires more discipline than holding my breath. Taking care of myself, over worrying for my child, is not natural for mothers.
But how long can a person hold their breath?
I came to realize that I cannot continue to live this way, starving myself of oxygen, denying myself my own life. I need to be strong for that moment he reaches out, asking for help. I needed to change, and it can only come from me.
I found a therapist who knows about addictions and mental illness. She helped me grieve the loss of my son, the easy son I once had; the son who won trophies, wrote essays, and had healthy relationships. To allay my fear and angst, I began to meditate, sometimes a walking meditation on the beach, or in the woods. Exercise and sports had always been a part of my life and it was time to incorporate these activities back into my life. I needed to live more consciously, beginning with eating well, not mindlessly consuming a pint of cookie dough ice cream in one sorrowful sitting.
The most difficult part for me was becoming social again. I had lost relationships during the chaotic times of my son’s illness. Let’s face it, people don’t understand, and I wasn’t fun to be with anyway. I made new friends who are also in the club of knowing mental illness and addiction. These friends could hear what I was saying without flinching or pitying. I don’t want pity.
What has helped give me perspective and insight is being well informed. I read and learned everything I could about the dually diagnosed, those with serious mental illness and substance use disorders. I found my local NAMI to be most helpful, especially the Family-to-Family class that my husband and I attended together. I found support and community there too. I also called upon my faith, that faith I had felt abandoned me during the hard times.
I feel connected to my son, and this is key. Feeling connected to our son gives us the best chance that he will turn to us when he is failing. It’s the best hope we can have. Feeling connected enables me, ironically, to let go a little more. Knowing that he is aware that we will always support his recovery and never judge his journey is the best insurance that he WILL turn to us on his own volition. Because ultimately, his recovery must come from him. I now recognize that holding my breath or living in fear will not give him tools to manage his illness.
How we stay connected is by expressing our deep appreciation of his strengths and struggles, and telling him frequently how much we respect his hard work. Believe me, I want to keep him in a bubble to protect him. But I don’t pity him or coddle. I support his efforts. I’ve learned the importance of letting go and allowing him to make his own choices and decisions, because I won’t be around forever to protect him. I enjoy his humor, his new quirkiness, and his artistic passions. There are many things I want for him but he may not want these things for himself. I’ve worked on learning to stay quiet, enjoy the moment, and find gratitude. I am grateful he’s alive and has integrated into his community, and is moving forward in his own way with his own volition.
Sometimes, I slip, and find I am holding my breath: after learning he’d “had a beer with friends,” or one recent night when he didn’t return home. The difference now is that I recognize when I am not living in this moment, but rather flashing back to the chaos of the past, and worrying about things that may or may not ever happen. My physical health is much better when I live mindfully, with balance, and joy. Every day offers the chance to find joy. I sound like a bumper sticker. A few years ago those sayings evoked anger rather than peace for me. I don’t want to be in this club of parents whose children struggle with a dual diagnosis. I want to be a parent of an adult child whose biggest problem is finding the right career, or breaking up with his girlfriend, or learning to budget his money.
But this is where I am in this moment.
Your comments are always welcome:
Our guest blogger is writer Michael Ross. His sister Michele lived with bipolar disorder and substance abuse. Over time, the side effects of the medications necessary for Michele to function took their toll. In his eulogy for his sister, Ross makes sense of what her much too brief life meant for him and her loved ones.
While my sister Michele was deathly ill and in limbo, I was struggling to find a way to think about it. My wonderful wife Markie, who has helped me immeasurably with Michele, out of the pure conviction of her belief system said something like, “I think her soul is waiting to break free. And after that happens, she’ll be purely Michele without all the burdens.”
In that moment I felt a sense of release. The situation remained crushingly sad but now it was fitted into the context of nature eventually taking care of us all.
To honestly and righteously celebrate my sister, I turn to the soul of the girl. And to do that, we have to jump back into the 1960s…
Michele was the first person I ever knew who was truly avant guard. Creativity flowed through her. It was “stream of consciousness” in nature. In 1966 when she was fifteen, she won an essay competition and was invited to read her work in front of the congregation at our Temple— Temple Beth Hillel. It was called, “Fairytales in the Grass— a surrealistic sermon.” This was the moment I learned she was avant guard, although I didn’t know what that meant back then. While Michele was on the pulpit spinning her psychedelic metaphors, I sat next to my dad who seemed to have restless leg syndrome. The poor guy was unsettled by the force of what she was saying. I was too young to get her story, but I knew there was music in her words. She finished by quoting the end of the Diary of Anne Frank where Anne says, “In spite of everything, I still believe that people are really good at heart.” There was complete silence… then a stirring in the congregation at which time my dad issued a one-word critique under his breath: “Jesus.” But after the service he was met by a wave of people, a lot of whom were his age and were genuinely moved by his daughter’s speech… And “Jesus” turned to, “Thank you very much.” I realize now he was completely flummoxed. Because she was avant guard.
In her high school years she played piano, guitar, wrote songs. One of them seared itself into my memory. I’ve remembered the first verse my whole life:
Frankenstein’s in the womb of the mothers of invention. He’s silent and still as the luminous rays. As the sun piercing through my eyes to my brain. Telling me there’s no rain.
Now, I still don’t know what that means. But I do know that in 1967 it was as arresting as the song “White Rabbit” by the Jefferson Airplane. At this time, along with being avant guard, Michele started an alternative spiritual journey from being the girl who was bat mitzvah at Temple Beth Hillel to the relentless Hare Krishna chanter in her room. All night, “Nam yo ho renge kyo.” And then early the next morning, I’d hear her quick footsteps to the front door. She’d open it and look outside at the empty curb in front of our house. She had not been rewarded with a car. So then, back into her room. “Nam yo ho renge kyo…”
In 1969, Michele went to college in Arizona and certain trappings of being avant guard, namely, drinking and taking drugs, overtook the creative part of being an artist. And here’s where I mourn. If she’d applied study and technique to her wellspring of talent, Michele might have become… you could fill in the rest of that sentence in so many ways. But this is where we have to re-calibrate what was success in the life of my sister. And see that her soul, which became weighed down more and more, always tried to find new ways to show itself.
After living in Portland for a number of years, she moved back to Los Angeles in the summer of 1976, admitting that she had addiction problems. A cycle began of staying sober, slipping, rehabbing, slipping. My mom and I wrestled with this new notion of “tough love.” Louise attended to Michele and advocated for her. I’m not saying theirs was the healthiest of relationships, but by God, my mom was steadfast and remained so, as it became clear that Michele’s problem was more than addiction and now included the diagnosis of bipolar disorder, which brought a much heavier challenge. But through all of this, Louise and Michele had a life— dim sum lunches, going to their favorite coffee places, bonding over my familial shortcomings.
Lucky for me I married Markie and we have our beautiful children. They were a tonic for everybody. Michele showed her sweet soul with my kids. When they were little she was “Aunt Michele,” who always made them things and was always interested in what they were doing. They didn’t spend a lot of time together, but my girls loved her. And when they got older, although Michele never explicitly said this to them, she once told me that she hoped her mistakes would keep them from making the same ones. I remember the moment I conveyed this to Kate and Daisy. I was proud of Michele. Proud of my big sister.
Success for her was in the work she did at TobinWorld, this wonderful school for developmentally disabled children. A couple days a week she made them lunch— hamburgers—which she did great her whole life. While the job may have at first been a kindness offered to her, the staff came to truly appreciate Michele. Because the kids loved her. Because she loved them and she’d say, “I get a kick out of ‘em.” She also found success in her work at the dog shelter where she volunteered, grooming and playing with dogs. Like with the kids, it was a pure connection. Most people love dogs. Nobody loved them more than her.
When our mom died in 1997, I became Michele’s conservator. Now that was a weird deal for both of us. Challenging for both of us. It’s not the natural way of things. But, it wasn’t without its humorous moments.
Some years ago, along her spiritual journey, Michele turned for comfort, unfortunately, to the televangelists. I’d give her spending money for lunches with her friends, for movies, Starbucks, and for cigarettes. Periodically, she’d ask for more money more often. When pressed, she’d admit it was for the guys on TV, that sending them twenty-five or fifty dollars seemed like a pretty good deal for getting into heaven. We’d debate this for a while. She’d make her points. I’d make mine. And finally, we would arrive at the same place. I would say, “If you’re gonna buy your way into heaven, you’re gonna do it with your cigarette money.” I’m proud to say she’d always pick tobacco over Pat Robertson.
Now… as I write this, at this point I’m feeling stuck… how do I close out a tribute to a life that seemed too soon to end?
I want to tell you guys, my family, my cousins, that while Michele couldn’t connect to all of us in a way that felt substantial… she was connected to us, in her own way. She always welcomed news about all of you. She always wanted to tell me when she had spoken to Aunt Ruth, or Chris, or Evelyn. She always enjoyed saying that they sent me their love and regards. And she always would tell me when she sent my regards back. Her life was hard work for her. It was often hard work for me. But, with maybe more objectivity than I had while I was her brother/conservator, I can see and appreciate that until recently, Michele was always trying to move herself forward.
In the days since she died, I’ve been listening to the 60s channel on satellite radio. The 60s were her time, and that music connects me to what I remember as her essential self. So, while I know what she was hoping would be her reward, here’s my version of it… It’s 1967 and she’s going to San Francisco with flowers in her hair.
For the last twenty-four years, Michael has been a writer/producer for network television comedies. Prior to that, he was an actor. Prior to that, he and Michele played guitars and sang together.
Within hours of learning of Philip Seymour Hoffman’s death, reportedly by heroin overdose, discussions popped up in the media about how tragic the loss of an artist so wildly talented and committed to his craft. Then, in less than a day, the discussion opened about the tragedy and consequences substance use. And yes, weeks later, here is yet another. Among the mix of excellent pieces about substance use include David Sheff’s Time.com blog post (http://ideas.time.com/2014/02/02/how-philip-seymour-hoffman-could-have-been-saved) and the surprisingly insightful Russell Brand: my life without drugs (www.theguardian.com/culture/2013/mar/09/russell-brand-life-without-drugs).
Since a family member began having substance use issues, I have been searching to comprehend this struggle — a task for an outsider that is much like the practice of yoga, as one never reaches full knowing. As a practice, therefore, I read many of the articles that popped up in the media after Hoffman’s death. I don’t usually look at the comments, but the other day I did. More than one commenter wondered why we’re still talking about it, and another said, “He’s just another loser Hollywood celebrity junkie. Who cares?”
The comment marginalizing Mr. Hoffman’s, or anyone’s life to that of a “junkie” reminded me of something Esme, a mother and contributor to our Behind The Wall project, had once offered. Esme’s oldest daughter lives with a serious mental illness that would sometimes lead to ugly displays of rage. Once, another parent learned of one such incident, and declared that neither of Esme’s two daughters would be welcomed in her home —as if the illness could catch or be transferred in some way. As if a person with a mental illness chooses to be incapable of rational thinking.
But Esme was circumspect about the way others may view her as a parent, her children and family. She says, “I understand because people who don’t deal with mental illness don’t get it. I wouldn’t expect them to. It’s hard for another parent to understand. Because of my own experiences, I am able to not judge other parents but I don’t expect the same from others because it’s human nature to be judgmental.” Esme felt hurt when her daughters were ostracized out of ignorance. But she knows that her experiences have given her a more open, empathic view.
“It’s not their life and good for them they don’t have these problems.”
Esme would rather her daughter not live with a brain disorder, but the outcome of the arduous journey parenting and advocating has made her more empathic. About those who can’t possibly understand what it means to live with mental illness, to love or care for a loved one who does, she says, “It’s not their life and good for them they don’t have these problems.” Ironically, these people who have no idea about what it is like to live with mental illness and, or substance abuse, have no idea how very fortunate they are.
For those of us who do have the tiniest inkling about the challenges of living with a serious mental illness and / or substance use, we don’t see Mr. Hoffman as a “junkie”. We see his death as the reminder of how difficult it is, day by day, for a person who lives with substance use because we know that this is a brain disorder with a treatment protocol that boils down to arming oneself with a steely will and determination comparable to training for the Olympics, except the gold medal comes in the form of another day of life, and possibly one with moments of joy. For some, living sober requires a change in friends, geography, or lifestyle. And I’m not even getting into what it’s like for loved ones who want to help a person struggling with substance use.
That Mr. Hoffman lived for more than two decades clean and sober is a remarkable accomplishment given the access he had through his wealth and celebrity. We keep talking about Hoffman’s death because it’s a cruel reminder that the struggle with addictions is not reserved for junkie losers.
Comments are always welcome:
After an article I wrote was published in the San Francisco Chronicle on November 7th entitled, “Coming clean about mental illness,” we received many heartfelt responses. One mother’s email to us was particularly poignant. She agreed to allow us to provide a portion of it here, as a guest post. We are grateful for her courage to share.
To see the original article to which she reponds, go to: (http://www.sfgate.com/opinion/openforum/article/Coming-clean-about-mental-illness-4962030.php)
On my son’s 25th birthday.
Today is my son’s 25th birthday.
Today is a sad reminder of what little impact I have had on this disease and how small I feel standing up to a most vicious bogeyman: mental illness. This day is a taunting gut check of the limitations even a mother, his most formidable defender, has in protecting a child from this illness.
What should be a happy day for my son and me is muddied with fear, anxiety, angst and mostly guilt— the worst kind of guilt— “Mother Guilt.” It’s a particularly profound kind of guilt, not because mothers like me feel responsible for our child’s illness (though that myth is hard for us to shake), but because mothers, by definition, are “fixers”. We identify needs, solve problems, make the right calls, do what needs to be done – often neglecting our own needs in the process —to protect our child and keep him safe.
I can honestly say I have tried everything and have not succeeded. My son still suffers from mental illness and I can’t fix it. I do not have a cure, a salve, nothing. From the outside, I appear to have failed as a mother, and yet, I have been working, strategizing, and hoping for 25 years, and this road feels endless.
Some days, I am hopeful about where he is, what I can and will do for my son, and even that I am here for him. Other days, there is gut-wrenching helplessness for not knowing what do for him, or how to prevent his self-harm. Parenting him is a rabbit hole of emotion: guilt, hope, sorrow, hope again, and a final re-birth of sadness. I have been told, “one cannot parent mental illness,” and that is supposed to make me feel better but it does not. Parenting, surviving, loving, and guiding a child with mental illness requires ineffable courage and strength I never before could have imagined I could muster.
My experience is too difficult to share with others, too upsetting to talk about, and it’s always a conversation downer. And though my son is always top of mind, I struggle to talk about it. I cannot bear judgment cast upon my mothering.
What birthday card is there for a young man whose mental health treatment has become infinitely more complex by his using substances to self-medicate his bipolar disorder that doctors now admit began in childhood?
No, there is no birthday card for my 25-year-old son who has lived with Tourette syndrome, a brain disorder that hijacked his body with compound tics at the age of three, his head rolling in circles and elbow jabbing at his side, my distraught boy telling me, “It’s not me! It’s my brain and it’s really making me angry!” What birthday card is there for a young man whose mental health treatment has become infinitely more complex by his using substances to self-medicate his bipolar disorder that doctors now admit began in childhood? At eighteen, he was finally diagnosed with bipolar but by then I had even less ability to help him. Because of the havoc that Tourette syndrome, bipolar disorder, and substance abuse wreaked on his brain, I have fewer tools now to teach him how to navigate the real world on his own, or develop the most basic life skills most men his age have acquired and then some.
I am not greedy. I don’t need an Ivy League graduate, a CEO, or President of anything. My accolades for him seem easy to achieve to most of us: he needs to survive the day, then the next one, functionally. I pray for simple things: his happiness, health, love, harmony, and peace, all of which continually elude us because my beautiful boy suffers from mental illness.
On his 25th birthday, I want to tell him how much I love him; that I am always here for him. But no mainstream sentiment expresses the complexities and depth of loving an adult child who lives with mental illness. The lives of adult children who live with addictions or brain disorders do not correspond in any way to the trajectory of most “normal” individuals, or the milestones for which they strive.
For mothers like me, birthdays are annual reminders of what once again has not been resolved, and may never be.
I occupy a front-row seat to his suffering, a season pass to his hardships and there are no time-outs. And while I am unwilling to leave this game, I desperately pray for a reprieve from his suffering, peace for him to rest. I long to see his infant face again, the one for which I possessed the magic to soothe with simple maternal nurturing. I long for simpler times when he found peace in the safety of my arms. In that sacred embrace, I vowed to protect him always. A commitment made by mother to child, a promise I have never broken. I know I am not alone but I can’t help but feel isolated and afraid for that baby I held 25 years ago today.
Parenting a mentally ill child is the hardest thing I have ever done. I love him more than anything in the world and would give everything to change his situation.
On his birthday, what I want to say is simply:
I will love you always, like you forever, and you will always be my baby. I love you my son. Happy Birthday.
As always, your comments are welcome:
*cake image courtesy of notmartha.com