Grief: The Path to Hope and Recovery

By Elin Widdifield

I’m grieving. I lost my son. Somewhere he’s still there…It’s okay to let yourself grieve. It’s going to be a lifelong process.
– Bianca, the mother of a 25 year-old son who lives with schizophrenia.

 Jennifer was self-disciplined and structured. Now we had a child who couldn’t cope in school. That was like having a different child. It was as if one day we opened the door to find someone else had moved in.
Esme, the mother of a 20-year-old daughter diagnosed with
borderline personality disorder, bipolar disorder, and substance use disorder.

 

Throughout our interviewing process for Behind the Wall, and as we continue talking with parents we meet as we travel around the country to talk about our story collection, we have found that the same themes continue to bubble up. We expected parents to talk about problems with HIPAA laws, lack of access to evidence-based care, complexities of a dual diagnosis, medications, and the court system…and we were right. But one of the most poignant and recurring themes continues to be the subject of grief.

When a loved one becomes ill, each family member experiences grief, including the person living with a mental illness. For example, parents grieve over the temporary and permanent cognitive and behavioral changes in their child and the requirement that parent and child revise expectations for short and long-term educational, professional, and personal opportunities. Siblings grieve over changes in personality and abilities that alter relationships; family focus often shifts to the needs of the ill child, which can create a sense of loss for other children and alter a family’s dynamic. A person who lives with mental illness grieves the loss of himself and what is lost cognitively, such as the ability to read books or sit through movies.

All family members may experience isolation from their community due to stigma and because outsiders often can’t comprehend, or choose not to learn about the experience of having a loved one living with mental illness. The chaos and confusion that goes on behind the walls in these homes is often undisclosed to friends, neighbors, and even to the mental health care providers, leading to more isolation.

The Merriam-Webster dictionary defines Grief in part as the following:
A:  deep and poignant distress caused by or as if by bereavement
B:  a cause of such suffering

Parents of adult children living with serious mental illness likely identify with poignant distress and suffering. There is no deeper emotional suffering than that of losing a child—even just parts of that child altered by illness either temporarily or permanently.

When we began interviewing parents for our story collection, the first question we asked parents was to tell us about their child as an infant through adolescence. We wanted to know about their child’s talents, their personality, and later interests and friends. We wanted to see if parents had a library of good memories in the midst of the chaos that defines living with a loved one suffering with a brain disorder. Most all parents brightened while talking about their child’s early years. There were fond memories of family vacations, special talents, and achievements in sports or academics. One parent relayed a story about how charming her son was from an early age— and still can be when he is stable, and compliant with his treatment.

Seeing our newborn’s face, we imagine the possibilities, hopes and dreams. We think, here’s a clean slate! And we plan to do everything right for this pure, beautiful, gift. This little place in our heart grows with these imaginings of who he will become and how will he change our world, and how much love we will always have for him. Gazing into the tiny bit of perfection created by what can only be miracle, we don’t imagine the illness that comes later and we tell ourselves, we will protect. Always. To a new baby, no parent ever says, “I think you’re going to have mental illness and abuse substances.”1

When my son, Joseph, was diagnosed with a mental illness, my love for him never wavered but my inner world, the place that held the idea of who he was as well as all the imaginings and dreams of who he would become, collapsed in despair. I found myself isolating from others, giving up activities I had once enjoyed, and lying on the couch, reading madly to find out what I could do to ‘fix’ things. I became paralyzed with the fear of worst- case scenarios. I overate cookies-and-cream flavored ice cream to the point where I still cannot bear to look at that flavor. My husband, also in deep pain, grieved differently. He tried to soldier on, busied himself with work and suggested ways to ‘Fix It’. Our son who lives with mental illness felt great loss too. One day he asked, “What has happened to me? I’m not the same person anymore.” Meanwhile, our older son began to pull away from the confusion. We were all in a sad funk, each feeling a loss, and each in a world of pain.

Fortunately, an astute therapist pointed out that we were experiencing grief. She explained to us that there was hope, and hope leads to recovery—magic words for a suffering family. But there was work to be done—addressing the grief was the first step.

The journey was jagged.

Everyone’s experience with grief is personal; my husband’s method of coping was to be busy with work, I isolated and become obsessive, and our elder son pulled away. There is no judgment for how one does grieve, but working through it is critical for moving forward, and having hope in one’s life again.

Joseph, diagnosed with mental illness with co-occurring substance use disorder, got help through ACT.2 The Assertive Community Treatment team helped him to address head-on his mental illness, medication, and sobriety head-on; the team counseled on how to reintegrate into the community and learn healthy habits for his physical health. It is a day-to-day struggle for people with mental illness to live a structured, healthy life in order to stay out of the hospital. He needed non-judgmental support from loved ones and we needed to work hard to learn about the illness and how best to support him. As he began to work toward these goals, and his health improved, Joseph’s grief was greatly reduced and hope returned. Our whole family began feeling hope. My older son felt he was getting his brother back and I no longer felt gripped by feelings loss and fear. Most importantly, time with family became enjoyable again, as it was before Joseph’s illness.

Elin walking on path with sisters

Support from my sisters eased the grieving process.

I worked through my grief with therapy. I found meditation. I engaged in quiet activities that I enjoy. I spent many hours of walking in the woods, kayaking, and talking with other parents. Through this process, I rebuilt that place in my heart that holds my hopes and imaginings for him—the same place that holds dearly to memories of Joseph as a smart and funny little boy. We have home movies of him playing sports, dancing happily, and saying funny things. I began to feel gratitude.

One would imagine that re-visiting memories would make my loss feel unbearable, and it did for a while. But it began to work for me. My husband was a few steps behind me in his process, but he also re-visited all our wonderful memories of who our son once was while we also both began to get to know this new person who was emerging healthy, talented, and smart—a young man in Recovery!

Recently I spoke to a gracious group of mental health care professionals in Winston-Salem, NC, at Novant Outpatient Behavioral Health Hospital. I was happy to learn that they are addressing grief for each family member. I believe it is the job of mental health care providers to help families through this process. When we are grieving, we cannot make good decisions for ourselves because we are in a cloud of emotions, we are often isolated, and everything feels confusing, and dark.

Telling our stories, and hearing the stories of others, greatly reduces our feelings of isolation, and helps us to heal and move forward. As a co-facilitator of the NAMI (National Alliance on Mental Illness) Family-to-Family class, I know that learning about the latest research for brain disorders, and sitting in a room full of people who are learning to cope with a ‘new normal’ as they navigate this ragged road, is also healing and informative.

If you are a person who has a mental illness, or if you have a loved one who is struggling, find an astute mental health care professional who will help you to address your grief, and loss. It is a painful journey, and for me, not unlike having shards of glass stuck in my gut day after day. But one must walk through Grief to get to Hope, and eventually to Recovery.


1 Up to 60% of people who have a mental illness, also have co-occurring substance use disorder. www.nami.org

2 ACT, Assertive Community Treatment is community -based treatment for people with serious mental illness, and often with co-occurring substance use disorder. ACT is a team of professionals who help people to reintegrate into the community by living semi-independently, engaging in everyday tasks, to gain job skills, or attend school. www.dualdiagnosis.org

 

Comments always appreciated!

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C’mon. Say it: mental illness.

word collage-1 What do we want to talk about?

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:

 


Why we talk about mental illness.

Behind The Wall co-author, Elin Widdifield, met with Patrick Kennedy to discuss Mental Health Parity legislation and other issues affecting those who live with brain disorders.

Behind The Wall co-author, Elin Widdifield, met with Patrick Kennedy to discuss Mental Health Parity legislation and other issues affecting those who live with brain disorders.

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?

Elin-Mary-Neal-BookSigning

Co-authors Elin Widdifield & Mary Widdifield signing books.

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.


The Shame of Stigma

by Elin Widdifield

shameLast week in a book group I facilitated, the topic of “shame” was raised during discussion of author Wally Lamb’s latest novel, We Are Water. One of the main characters, Annie Oh, had been sexually abused as a child. Her shame was wrapped up in guilt and loss, and as a foster child, she received no professional help. She no doubt felt confused, angry, and she lived in a tangled web of shame and secrecy. For years, her anger festered, expressed in her “outsider art” and by abusing her son. Shame, guilt, and secrets caused darkness and deep troubles in Annie Oh’s family.

What is shame? Merriam-Webster defines shame as: A feeling of guilt, regret, or sadness that you have because you know you have done something wrong. Ability to feel guilt, regret, or embarrassment, dishonor or disgrace

From the Oxford Dictionary we can add: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior. (Emphasis in bold is mine.)

Shame can be useful for enforcing behaviors that keep individuals and others safe in a society. We want criminals to feel shame for socially unacceptable actions. Unfortunately, many criminals are sociopaths, incapable of feeling empathy, guilt, or shame, which can create frustration for those of us who do experience and respond to these emotions and/or have been a crime victim. Most all of us have felt shame at some point in our lives, perhaps as a child, when learning society’s code of ethics from elders. Sadly, some, like Lamb’s Annie Oh character, carry an undeserved burden of shame throughout life.

​T​he Oxford Dictionary says, shame is a distress caused by the consciousness of wrong or foolish behavior. What is perplexing, and not included in the Oxford or Webster definition, is that too often people feel shame for events out of their control, such as being abused as a child or born with a brain that is wired for a mental illness.

What does shame do? Shame isolates, leads to secrecy and to hiding one’s truth. Shame denies one the ability to make honest appraisal of oneself, one’s life. Shame is the foundation of stigma and most devastatingly results in a reluctance to acknowledge illness and/or seek treatment.

How many times has the media squawked bafflement that an individual who has caused their own death or harm to others had lived with undiagnosed or untreated mental illness? “How could a person or their loved ones ignore obvious symptoms of mental illness,” they ask?

Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar…

For those of us who have a loved one living with a mental illness (most of whom are NOT a danger to others), it is not surprising a person fails to seek treatment, or that loved ones weren’t successful in enforcing treatment. Our society feeds the stigma of mental illness with its solid diet of… yes, shame. Rarely is a person praised for their hard work of addressing their mental illness and undergoing treatment. It’s usually discussed in hushed tones. Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar, and this despite the long list of highly successful individuals living with brain disorders.

How can we help to detangle this mess of shame, guilt, and secrecy, and diminish stigma?

We can speak about brain disorders openly in the same way we speak about physical disorders. Caregivers, family members, and loved ones must speak up about needing support. Those looking from the outside see no crutches, casts, or blood. Yet, in the home, loved ones are subject to the ill person’s extreme behavioral changes that cause chaos in all the lives around him. Loved ones must change plans as quickly as they are made; they often seem distracted and are overwhelmed. But those looking in from the outside don’t know the truth unless it is spoken about.

Starting a conversation about the impact of a loved one’s brain disorder on our family, and more broadly, our society, is not always comfortable. We still encounter a tone-deafness about mental illness. Recently, when talking about interviewing people all over the country for Behind the wall, a man interjected, “You mean you found crazies all over the country?” I bit my tongue and, after a beat and a breath, I continued my effort to share information about mental illness. Some will back away, because this illness has nothing to do with them or their family. And that’s​ okay. Fortunately, in our experience, most people to whom we speak about Behind the Wall do understand or want to learn about brain disorders.

For the sake of our neighbors, friends, and because of the prevalence of mental illness across the globe, we continue to share what we know about brain disorders in an effort to reduce stigma and encourage individuals to seek treatment. Speaking openly, without shame, is beneficial for a whole society. We can have stronger and safer communities when our citizens who live with mental illness are not afraid to be diagnosed and treated. National Alliance on Mental Illness (NAMI) states the importance of encouraging quality (evidence based) treatment in terms anyone can relate to:

​The human and economic toll is enormous yet often hidden. Untreated mental illnesses in the U.S. cost more than $100 billion a year in lost productivity… Local hospitals and clinics must cope with associated chronic physical diseases. Schools have to open more special education classes. Courts and jails handle a large number of individuals who suffer from untreated mental illnesses. Suicide ranks among the top fifteen most common killers in the U.S. (in the top three among young people), and 90 percent of cases can be attributed to mental illness.

Our society must take responsibility to learn symptoms of an active mental illness. Those of us with experience, and who understand the illness, can lead this effort. An effective step in this endeavor is to demand in our communities that law enforcement, first responders, educators, and anyone else interfacing with the public are properly trained to recognize symptoms of brain disorders and learn how to interact with a person in mental health crisis. ​Brain disorders cause people to behave in odd ways. No doubt. A person with a mental illness may respond to his own inner processes, which may include frightening voices or paranoid beliefs. Atypical brain activity caused by the illness may be reflected an appearance of “not being all there,” and his responses are unpredictable to outsiders. Understanding brain disorders requires respecting that the input affecting his brain processes is unknowable and that his responses to these inputs influence behaviors that are odd and possibly frightening to an outside observer, or family member. These are behaviors of untreated mental illness, or of a person who has experienced a relapse.

We can all play a part in identifying misplaced shame for an illness that wasn’t chosen by the ill person and the foolish behavior symptomatic of the illness is out of one’s control. We can all do our part to reduce stigma so that people will seek and receive treatment.

We can stop assuming that living with mental illness equates to an inability to hold down a job and living a fulfilling life. Most people who are treated for serious mental illness live full and meaningful lives.

Our faith communities and workplace can be inclusive by understanding that the illness has symptoms that should not be conflated with a person’s character, or behaviors when they are well. We can support a person who lives with mental illness by providing a route for skill-building and work experience.

We can support caregivers of people living with mental illness by simply listening, taking a walk, or having coffee together.

There are many organizations whose mission it is to support individuals and families of those living with mental illness and to address stigma. Among the many, check out:

www.BringChange2Mind.org

www.healthyplace.org

www.activeminds.org

www.behindthewallstories.com

www.SZmagazine.com

www.thekennedyforum.org

As always, your comments are most welcome:


Parenting in a Tornado

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.

Of Oz of Cyclonically

“Of Oz of Cyclonically” courtesy of artist Sean R. Selders. Prints available at: http://www.angelfire.com/nj/TornadoScapes

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.

As always, comments are welcome:


Breathing

Our guest blogger tells us how challenging it is to live “in the moment”.

Photograph courtesy of Robert Cutten

Photograph courtesy Robert Cutten, 2013 http://www.bobcutten.com

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:


How Social Media Made Us Feel Media Awkward.

Social-MarketingSo, this is awkward.
My sister, Elin, and I set out to put a collection of stories together to help other parents and the extended family members learn to manage and advocate for a loved one who lives with serious mental illness. It was borne out of our own need; we wanted these stories for ourselves, to help us better support our loved one who had been recently diagnosed.

The editing process for our Behind the Wall collection was at times challenging. The gravity of the subject matter was palpable and honorably representing the stories and the storyteller, at times, daunting. These are difficult stories to tell and hear, and we felt it important not to sugarcoat. There were times one or both of us had to step away from the emotional intensity. We were confronted with our own relationship to the ideas and realities of mental illness, and how it affects our loved one, each other, and ourselves.

What kept us on task was thinking of the parents who told us after being interviewed that they considered the project important and earnestly hoped their story could help someone else—someone who was feeling isolated and scared as they’d once been. In the end, we received much more than we gave, much more than what we could ever have anticipated. We met inspiring parents who showed us how to be better, more compassionate human beings.

The Behind the Wall collection began five years ago from the time of this writing. As we rounded the corner and saw our collection taking the form of something we felt useful, we recognized that we had more to say—insights we had learned from parents but that didn’t quite fit the story collection format. That’s when we began writing our blog.

The blog turned out to be a good thing. It helped us to continue processing concepts for coping and living with having serious mental illness in the family. And, as luck would have it, when we talked to agents about our book they said, “You’ve got to have a platform! Social media! Blog!”

We thought, “Good for us! For once, we’re following the rules of the game!” Besides the blog, we had also begun using Facebook and Twitter to connect with others who are serious about talking about this important issue. Through social media we learned about many organizations doing good work to support individuals living with mental illness and their families. We learned that social media can be useful!

Our primary motivation for our story collection, blog, and social media has always been to share useful information we learn. We are doing whatever we can to spread the word about the importance of supporting those who live with serious mental illness, and supporting their caregiver/advocate and loved ones. We wanted to participate in spreading the word about the harmful effect of stigma and how it delays treatment, which in turn impacts recovery.

Because every individual’s mental illness manifests uniquely, and there is no “cure” for brain disorders, we never have, or ever will, advocate for a miracle treatment or standard “it’ll fix anything” treatment. While we may describe a particular evidence based treatment that has helped others, we do not advocate a particular medication or the decision to take NO medication.

So, imagine our surprise when we were accused of shilling/helping to promote a company via social media that advocates quitting doctor prescribed medications in place of vitamin supplements. Um. That was awkward.

We’re not saying that this protocol is recommended OR NOT recommended.


Our responses to those we follow on social media are responses to particular statements, or tweets, for example, not endorsements of said tweeter’s whole philosophical stance. 


Our responses to those we follow on social media are responses to particular statements, or tweets, for example, not endorsements of said tweeter’s whole philosophical stance. Advice/comments we advance are those echoed by the many experienced parents we have interviewed. Our goal has always been to bring stories to the forefront because there is tremendous healing in knowing others are living similar stories.

We forward information that includes such things as new clinical studies or literature that may be interesting and useful to others but that are from reputable sources. Because we’ve been keeping pace with the current literature, we can vet it for those new to the journey of managing mental illness, or we may learn about a new study that advances the treatment of mental illness and we want to share it.

That said, while we will not offer advice on treatments, there are a few recommendations we always stand by. And here they are:

  1. Regular exercise is good for everyone.
  2. Everyone benefits from a healthy, nutritious diet.
  3. Treatment sought for mental illness and/ or substance use should be evidence-based, and this means by a reputable source.
  4. When diagnosed with any illness, one should learn as much as possible from reputable sources.
  5. Obtain second opinions. Preferably more.
  6. If a “cure” seems simple, or one that “is being kept from the public by some large entity”, beware. If something is too good to be true, it is not true.
  7. Trust your gut.
  8. If you have been diagnosed with a serious illness, enlist a trustworthy advocate who doesn’t tell you everything will be okay, but who is willing to follow evidence based guidelines for your care when you are unable to advocate for yourself. If you are the caregiver, don’t say everything will be okay, but instead do your homework and understand the illness as well as you can.

 There it is.

We welcome comments.