This is the question my sister, Elin Widdifield, and I ask one another as we prepare to talk about the important stories in our Behind the Wall collection. We don’t present the same talk or readings at every venue because there are so many different facets of parenting and advocating for a loved one who lives with serious mental illness. What we talk about with mental health care professionals is different than what parents of children recently diagnosed can benefit from; then there’s a slightly different conversation when speaking to a broader audience. This subject matter is really important to us, so we have plenty we want to talk about.
As we prepared for the parent interviews that became the stories in our collection, we knew through personal experiences what areas of this parenting journey we wanted to explore. At the top of the list were questions concerning parents’ experience of grief and of course, coping. Other themes consistently bubbled to the surface throughout the course of interviewing including, and unexpectedly, thoughts about how to talk about mental illness.
Though our great-uncle, Dr. Lawrence Collins, was a well-known psychiatrist many years ago, the rest of the family of lay people didn’t have a language to discuss my grandfather’s illness (nor was the illness specifically identified) that caused chaos for his young wife (our grandmother). As he developed a pattern of missed work, his wife hid his illness, covered for him, and endured privately; his children rarely entertained friends at home. They would say he was “sick again” and everyone knew to keep a distance. It is a blessing they all possessed a wicked sense of humor and despite the chaos, recognized my grandfather’s positive qualities as distinct from the sickness.
We now understand alcoholism is an illness; treatment is available and celebrities talk openly about living sober. Yet talking about mental illness hasn’t quite caught up and widespread misunderstanding prevails. In my grandfather’s day, a cancer diagnosis wasn’t talked about outside the family either because, until cure rate statistics rose to foster hope, it signified doom. The stigma around mental illness is largely a result of the odd and frightening behaviors a person exhibits when the illness is untreated. There’s also a small, yet significant factor feeding stigma, one that is similar to how cancer was once viewed; it is a sense of hopelessness associated with the diagnosis. Sadly, what many don’t understand is that a person who is diagnosed with serious mental illness today can reach recovery with early detection and evidence based treatment. Many of us endeavor to address this misunderstanding through more accurate language.
There is an ongoing broader discussion about media and society’s penchant for exploitative and sensational language. I depart from that discussion here to focus on the manner we, as advocates, family members of those diagnosed, and individuals managing their illness use—or fail to use— clear language when talking about brain disorders. Through our interviews with parents, Elin and I saw that the way parents talked about mental illness, specifically and generally, matters a great deal. The way we use language, or lack thereof, reinforces stigma and the walls of isolation.
… managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Managing any chronic illness is a challenge and support for caregivers is as critical as support for the ill person. Stigma drives people away from providing this support to the supporters. Of a person with mental illness, we’ve heard it been said, “He’s off” or, “She’s a mess” and even worse, “He’s crazy!” In contrast, think about the language of cancer: “He’s fighting bravely.” “She fought a heroic battle with cancer.” Without discounting the bravery attributed to fighting any painful mortal illness, I assert that managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Elin echoes many other parents we interviewed when she states that mustering courage to be able to say her son’s diagnosis aloud was a milestone and marked a step toward acceptance and subsequent recovery. Verbalizing truth is key to acceptance. One Behind the Wall mother, Tessa, tells us when she accepted his illness, “his whole world got better.” One’s life improves because acknowledgment leads to effective treatment and importantly, the individual’s own acceptance. A person can only manage his illness once it has been accepted without judgment. Elin and I were quite alarmed that several parents we interviewed revealed that other family members, or worse, even the child’s other parent, were in denial about the diagnosis despite very clear symptoms. A subtext of conflict or judgment about the diagnosis among loved ones hinders a person’s chances for recovery.
Talking openly about mental illness is difficult at first. Elin and I found that once we started talking, others came forward gratefully to share their experience. Bianca, a Behind the Wall mother whose son lives with schizophrenia grew tired of skirting the issue. Now she just tells people. “My son has schizophrenia,” she says. “You know, You guys deal with it!” Because Bianca understands that she can’t control how others judge her son but speaking honestly about her experience and his illness is liberating, particularly when there are many more important issues about the illness to address on a day to day basis, like, “How is my son feeling today?”
Even ignoring the stigma, the parent/advocate role is sometimes grueling. A marathon. Communicating a need for help is no different than any other life challenge. Asking for help is an act of bravery, it’s practical and self-preserving.
Language and communication tools are much better than what my grandmother could access. When her husband drank, he was unavailable. The behaviors he exhibited that we now surmise as his mental illness were just “moods”. Sixty years later, when my nephew was diagnosed and at each juncture of his illness, my sister and her husband sent emails to extended family. Yes, that’s right. They talked openly about it. They spelled it out in vivid detail in email distributed to the whole family. Their emails carefully and factually conveyed a clear message: this is happening, please support us, and here are phone numbers and addresses. More recently, the emails speak about incredible progress.
It has been my experience that people really do want to help others in crisis. But, as one Behind the Wall mother reminds us, not all people understand mental illness; while that’s good for them that they have not had to experience the illness, the misunderstanding isolates a family just when community support is needed most. When one Behind the Wall mother, Rebecca, hospitalized her daughter, she didn’t want everyone to know every detail or have to talk about her experience to every person she encountered. But she did want support in the form of being with friends in a setting that was not all about her daughter’s illness. Like my sister, she used email to update friends about Stella’s, progress. She’d say, “I don’t want to talk about Stella’s progress at dinner tonight or church group tomorrow, but here’s what’s going on so you all know…” This way, she framed the type of support she needed, which for her was friendship and normalcy. Getting it all out in the open, limiting speculation and clarifying her own wishes, made it easier for Rebecca.
The journey supporting her son has been long for Tessa. Her son, now in his thirties has a dual diagnoses of substance use and schizoaffective disorder. Tessa is honest and uses humor to manage and cope. Sometimes, during conversations, he’ll even tell her, “I don’t know what I think about that because I’m crazy.” And when he’s not taking his medication or caring for himself properly, she says, “You’re crazy!’” Her friends tell her she shouldn’t say that to her son. But she tells them she’s treating him like a normal person. She purposely uses the same language flung carelessly about by others to create normalcy. She’s also expressing her defiance and challenging the language of stigma. She is declaring her commitment to a fearless, indefatigable, daily fight against mental illness.
Comments are always welcome:
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:
Post by guest blogger, Alice Tanner.
We are honored to present a post by guest blogger, Alice Tanner, Addiction Recovery Consultant and Intervention Specialist, founder of Bay Area Intervention. Because more than 60% of individuals diagnosed with a serious mental illness are dual diagnosed with substance use, we know this is a critically important topic for discussion.
Ever heard the saying, “The family that plays together stays together?” Well, here’s a twist: “The family that recovers together discovers together!”
As a “family” disease, no longer do clinicians and mental health practitioners believe that “the problem” lies solely with the person who lives with addiction and, or substance use. Today, we know the disease of addiction has an equally strong and destructive counterpart, co-dependency, which is the role families and loved ones play. We now understand that those closest to the person diagnosed with substance use have also unwittingly become unwell in the downward progression of addiction. The maladapted coping tools developed to deal with the behaviors and attitudes of the addiction don’t work. An example of a weak coping tool is when a family member tries to control substance use by getting rid of the chemical, or by nagging, threatening, or pleading for the using to stop. These tactics may work for a while, but soon substance use resumes, often more hidden and escalated. Over time these ineffective and unhealthy coping skills become entrenched. When a family finally seeks professional help, usually through intervention, they begin to learn that addiction is not just Joe or Jane’s problem, that it is a family disease and that recovery must involve the whole family.
Recovery from addiction takes a lot of time and effort. It requires total transformation, changing from the inside out. This transformation is not intuitive, easy, or passive. We are quick to understand the need and desirability for a person who abuses substances to change, however, not so quick to understand or believe the need for the family to change. The source of the constant codependent pull is the belief that, “If John stops drinking and creating all this trouble, I won’t have to be so ______________________ (controlling, watchful, financially helpful, etc). The myth is that if the substance user gets well, the family and friends can get back to a “normal” life because the bad behavior and resulting consequences will stop. Nice idea, but it’s not the way it works. Truth is, without family recovery the codependent coping behaviors continue; they just manifest differently.
Families, blind to their own need for recovery, are content to let their addicted loved one do the recovery “thing” while they get back to “business as usual.”
Families are often challenged to understand that recovery is a family affair. Just as it was once incomprehensible that life could ever get as bad as it did for an addicted loved one, or that family life would be disrupted by the chaos of addiction, families frequently do not quite believe they need their own recovery. They must come to accept the necessity for systemic change in the same painful way they accepted a loved one’s addictions. Families, blind to their own need for recovery, are content to let their addicted loved one do the recovery “thing” while they get back to “business as usual.” At best, this path is a detriment to solid recovery and, at worst, a derailment to it.
How families engage their own recovery is not an easy or simple question to answer or navigate. In general, families successfully do so by addressing unhealthy attitudes and behaviors that were cultivated in order to cope with the addiction that was taking over their family. For example, families learn to stop cushioning the consequences of their loved ones drinking and drugging. Family members willing to learn about addiction and co-dependency can begin the recovery process. When loved ones implement coping tools and behaviors just as their addicted loved one does, it creates supportive relationships in a difficult, but necessary, transitional time. Over time, the whole family changes and grows. The family enters recovery together. And, they all come to understand that recovery is not a spectator sport for the addict . . . or the family!
What does the family that recovers together discover? Hey, go for it and let us know!
More information about Alice Tanner and Addiction Recovery services can be found at: http://www.bayarea-intervention.com.
As always, your comments are valued.
Recently a friend introduced me to his friend by saying to me, “You have to tell him what you’re writing.” People don’t always want to talk about what I’m writing. Because talking about mental illness at parties can kill the mood. Makes a person run for more coleslaw. And if mental illness is not in your family, it doesn’t affect you, right?
Mental illness really does affect a whole family. The man I met, let’s call him Justin, has a son who lives with serious and sometimes debilitating anxiety. As Justin and I talked, his friend, who was sitting beside him, nodded his head and seemed to know the whole story. He’s a good friend. Justin went on to describe his son’s challenges and that one of the most heartbreaking aspects of the illness is the way his son’s siblings, one of whom had been quite close, have distanced themselves from their brother. Justin’s son was getting healthier and learning to better manage the illness, but his siblings blamed him for his behaviors and thought he could control himself. They’d say he was “lazy” because he wasn’t always as functional as they thought he should be. They are angry with him and stay away from him. Imagine how Justin and his son must feel; more worrisome is that the one thing a person learning to manage mental illness really needs is support from loved ones.
But sadly, those who have a loved one living with mental illness—and who share living quarters—know that sometimes distance is required for their own survival.
It’s not fun hanging out with someone who starts talking nonsensically or is easily and unpredictably triggered to act out with extreme anger.
That’s what mental illness does to families. It’s disruptive. It changes relationship dynamics. When the illness becomes symptomatic, a sibling who may have once shared a close relationship with the ill person often grieves along with the parent, at the (temporary or permanent) loss of their loved one’s talents and abilities. There is also anger because their sibling may have a thought disorder and cannot control behaviors. It’s not fun hanging out with someone who starts talking nonsensically or is easily and unpredictably triggered to act out with extreme anger. Some family members also feel betrayal because the ill person in the house sucks all the attention and exhausts everyone.
This churning mix of chaos, grief, and anger swirling in Justin’s house is similar to what many families of returning veterans experience. In 2002/2003 an estimated 1.4 million male and female veterans were identified as living with serious mental illness. Approximately 365,000 of these individuals had co-occurring substance abuse disorders. These numbers have undoubtedly grown significantly in the ten war-years since the collection of this data. That’s a lot of families struggling to learn how to cope with grief and chaos while also supporting the recovery of their veteran-loved one.
Only many years after our Vietnam veterans returned were they given their due respect and many still don’t feel fully appreciated. But since that belated and collective mea culpa, we’ve all talked a lot about supporting our brave men and women who serve our country. We are only recently talking honestly about the serious brain injuries, mental illness, and substance use that our veterans come home burdened with as collateral damage from their service. And yet, it’s these injuries and illnesses that likely contribute to the appallingly high homeless rate amongst veterans (33% of all homeless males are veterans).
That there are more than 1.4 million military families in our society grieving, coping, and supporting a family member who lives with mental illness should rightly elevate the importance and awareness of mental health for us all. Not just those who have a loved one with mental illness, and not just military families, but all of us. Because with that many affected families, it becomes society’s issue. With numbers this high, failing to address mental health with genuine intent is a repeat of the dishonor our service men and women experienced returning from Vietnam. They performed their duties as asked and we didn’t give them their due.
It may not be a fun topic for the next neighborhood barbeque, but it’s certainly a subject to address with congressional leaders and in meaningful political discourse. On this Memorial Day, we can put all that talk about honor into real action and support military families by pushing for better mental health care and supporting the families who support the returning veteran.
So yeah, it does affect you. And me. And the more than 1.4 million families across the country who are trying to make sense of it all.
 National Alliance on Mental Illness (NAMI) provides statistics, information, and resources, and support for those seeking help in managing one’s own mental illness or that of a loved one.
 Source: http://www.veteransinc.org/about-us/statistics
Your comments are 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.