Dying of Kidney Disease

This is unbelievable and yet horrifyingly true.  ‘Jenny’ had been fighting her illness for almost half of her young life. Her foe was familiar yet still terrifying with its relentless and changing symptoms that reoccurred despite a long list of medical interventions. She had been through intense treatments with numerous side effects and a lengthy hospitalization when she was 11. Now, at 15, her illness was back with a vengeance. The diagnosis (kidney disease) still puzzled the medical team as they debated what to do next.

At the advice of her doctors, Jenny had recently started a daily outpatient treatment, but her illness continued to escalate and was now life threatening. She was tired of hospitals, tests and medications that didn’t work and seemed to only make her sicker. Nothing could ease her pain. Jenny wanted to give up, she wanted an end to this ‘life’ that was void of most of the things that teenage girls ought to be doing and filled with suffering. Jenny had lost hope.

Jenny’s parents took her to go to the emergency room, hoping that the doctors could convince her to be hospitalized, to get the care, the monitoring, the medications she needed to keep her alive.  In the emergency room, Jenny panicked. The nurse brought in a syringe, and Jenny screamed that she wanted to go home. She refused treatment.

As in many states young people can refuse treatment once they turn 14.  Jenny’s parents couldn’t bear to see their beautiful daughter in so much agony, and they couldn’t bear the thought of losing her. Yet Jenny stood firm in her decision. She was so sick, so exhausted and so weakened by her kidney disease that she wasn’t thinking clearly. Yet her parents had no authority to get Jenny the medical care she so desperately needed. She was slipping away right before their very eyes.

One of the nurses pulled Jenny’s parents aside. There was a way, but it would be difficult. Because Jenny was clearly in danger of dying, her mom and dad could call the police who could take over and legally (and physically) force Jenny into treatment. It sounded horrible, but the alternative was worse. Reluctantly they made the call.

The police arrived, and the process began and became increasingly complicated. The hospital was not equipped to treat Jenny’s condition, so she needed to be transported elsewhere. The caseworker worked to find a hospital that could treat Jenny and that had a bed available. Hour after hour went by while Jenny became more and more agitated, her pain increased and the medications she was given had little effect.

Finally a hospital with an open bed was found. As quickly as Jenny’s parents saw a glimmer of light, their hopes were dashed. The ‘hospital’ was 90 miles away and was a part of the state department of corrections. Jenny’s parents begged for a different placement. They knew that there was an open bed at a different hospital but Jenny could not go there. Now that police were involved, the options were limited to the hospitals that contracted with the county. Jenny’s parents no longer had any authority, not over their daughter, not over her care. They could not take back their decision and they could not take Jenny home. They were powerless.

Jenny sobbed and yelled and cursed. She was terrified, the police were frightening her and she didn’t want to be so far away from her parents, from her home and from everything familiar. One of the policemen barked at Jenny, telling her to quiet down, to stop yelling or he would charge her with disorderly conduct and put her in handcuffs. Jenny’s parents were stunned. How could this be happening? All they wanted was to get medical care for their child and suddenly she was a criminal.

The ambulance arrived to transport Jenny to the ‘hospital’. Jenny begged for her mom to ride with her in the ambulance, to comfort her and hold her hand. But the police didn’t agree. Jenny would be accompanied by one of the police officers, the very people who terrified her. The best that Jenny’s parents could do was to follow the ambulance, fighting to see the taillights and the road through their tears.

At the hospital, Jenny was read her rights . . . “You have the right to remain silent, you have the right to an attorney, anything you say may be used against you . . . “.  Jenny’s parents were in shock. How can this be?? She is ill. She needs treatment. She has kidney disease! Her mom said “Can we speak to the doctor? We need to discuss Jenny’s medications, her care, how do we get her out of here????”  Sorry, the doctor had just left for the night with only the nurse on the unit and “in charge”.  The doctor would call in the morning. 

Heartbroken and angry, Jenny’s parents drove the hour and a half home. They made phone calls to the hospital that was equipped to provide decent care and were told that Jenny was on a waiting list. Perhaps a bed would open in two days. But there were obstacles. Because Jenny was in police custody, the doctor, the social worker and the county caseworker would all need to agree to the transfer. And then, there would have to be a court hearing. Jenny would need to testify on her own behalf. “In person?” asked Jenny’s dad, “Or from the hospital by phone or in writing?” They were told “It depends.”  If Jenny had to appear in person she would be shackled and transported by the police.

How could this happen in 2013, in the United States, to a critically ill child? It does. This story is entirely true except for one detail. “Jenny” is suffering not from kidney disease, but from a mental illness. Is this scenario acceptable for a child with kidney disease? If not, then why should it EVER be acceptable for that same child with mental illness? My heart is breaking.

 

Walking Together

I signed up for this walk and I guess I have to participate. It is October and raining…hard. It is dark and grey and miserable along the shores of Lake Washington. Across the lake the Seattle skyline is hidden behind dreary, low clouds that threaten continuous rain. My last NAMI-BC2M walk was far across the country on the east coast. On that walk I joined NAMI Walks NYC, beginning at the Seaport in Brooklyn and from there we walked across the Brooklyn Bridge. It was a sunny and beautiful day with great conversation and high spirits. The previous NAMI walk in Seattle was also a beautiful spring day and we proudly carried the Bring Change 2 Mind banner.

Miserable is the best word I can think of to describe this particular day. It is not “misting” as it can often do in Seattle; it is pouring. The wind is blowing and the rain is sideways. It is cold. I wonder how many people will actually turn out for this 5K slog along the wet and windy shoreline of the lake and walk to Carillon Point. In good weather this is a beautiful walk. Today it is bitter and soggy.  

My daughter Linea, my husband Curt and I make our way past the multitudes of umbrellas to join our team under the Marina Park Pavilion. We put down our umbrellas and shake off some of the water collecting on our pant legs and stomp off the water filling our shoes. We meet old and new friends on our team and slowly make our way back into the downpour to listen to the short welcome speech and begin the walk. It continues to be wretched weather but soon we are laughing about how miserable it is and if we should go the entire way or quit at the halfway point. My friend Victoria points out that this is kind of an analogy for living with mental illness. She is so right.

If I were walking alone I would have given up a short distance into the 5 kilometers. It was too wet even for a person who has good rain gear. I would have waited for the rain to let up or walk this route another day. But together we are a team that urges each other forward. We listen to stories and understand more about why people are walking on this day, in this rain. I talk with a friend who I hadn’t seen since the last walk and we share new resources that we had each found over the last year. Another walker updates me on the health of a family member who is the inspiration for her walking in this downpour. I meet the family of a new and dear friend who had recently lost her son to his mental illness. The family walked with his smiling face on their personalized photo buttons. The little niece and nephew of this man slog along with us, all 5 kilometers and through puddles much larger than they could jump across, yet they never complain. The youngest is soon carried by his dad and his dad never complains. There is much laughter and soon we are at the finish line. Together we have made it.

People living with mental illness need a team. The family needs a team as well. Living with mental illness is not often a sunny walk in the park. It can be miserable, cold and feel like it is a never-ending slog. There were many, many times during Linea’s initial diagnosis with bipolar disorder that I felt I couldn’t go another step. The difficult search to find treatment while her illness was working to take over her body was exhausting and overwhelming. I was disheartened, terrified, and uncertain. I felt very alone. We slowly found our team and we shared our story. Together we moved forward with the support, strength and good humor of family, friends, care-givers and medical providers. There is hope and there is recovery in this journey with mental illness. There is strength in numbers and friends are made when people face adversity together. Join us on our NAMI-BC2M walk May 18^th beginning at Marina Park in Kirkland. Or join a walk near you. It might be a sunny day but no guarantees. If not we will finish our walk together.

Pain, Agony and Renewed Commitment

It was a cold Friday in February, February 2^nd 1996 to be exact. I received a call from the North Central Education Service District in Wenatchee, WA. I was the secondary special education coordinator and a member of the crisis team. A 14-year old student at Frontier Middle School in Moses Lake had shot an algebra teacher and two students and critically injured a fourth. I drove the 68 miles to Moses Lake and spent the next four days listening to the inexplicable pain and anguish of the surviving teachers and students. One week prior I had been conducting a workshop for teachers at Frontier. I knew the principal and I knew his wife. His wife was the teacher killed in her classroom while teaching algebra to a roomful of students. Two students in that classroom died with her. One young woman still lives with the mental and physical pain of that attack. My thoughts are jumbled as I relive sitting with a shop teacher and former Marine who had fought in Viet Nam as he cried that he “should have been able to protect his kids”. I feel deep pain as I remember listening to students tell me that they should have said something earlier. They should have done something. They wanted to know, “Why did this happen?” How many times has this happened since I was in that middle school in the middle of Washington State? Always too, too many.

I really wanted to write an excellent and thoughtful piece but it is so difficult. The horror of the deaths in Sandy Hook Elementary, the collective pain of a nation and world, the onslaught of interviews, articles, op-ed pieces, and opinions and more opinions bombard me with grief. So please excuse the lack of good editing as I instead share some thoughts, perhaps for my own clarity rather than to add any further noise to this national discussion.

I am a “professional”. I teach graduate students who will become special education teachers, behavior specialists, school psychologists, school counselors and often school administrators. I just finished teaching a course on behavior evaluation and support; a course that teaches educators to recognize signs of behavioral disorders and methods to provide positive treatment and support. In addition to my professional training, I have been on a personal journey into the world of mental illness with my daughter, Linea, and I have learned what it is like to be a mom of someone living with bipolar disorder. This deepened my understanding of the gaps and horrific need for services beyond what I learned when I was a teacher of children and adolescents with severe mental health conditions and behavior disorders. It frightens me, it saddens me and it strengthens me.

Every day I am privy to stories of pain and of the lack of resources and services. My work as a volunteer for The Balanced Mind provides me the honored opportunity to hear very personal and heart-breaking cries for help from families all over the nation (and world) who are struggling to find a way to save their child from an illness that may not yet have a diagnosis let alone a treatment plan. As a board member for Bring Change 2 Mind I am privileged to be a part of a team of dedicated people fighting to eliminate the stigma that surrounds mental illnesses and often keeps people from seeking and finding help. In my work as a professor at Seattle University I often work on truly horrendous “cases” that involve children and adolescents that, due to no fault of their own, stymie even the so-called professionals’ efforts to find support and resources. Each day my work and my personal experiences strengthens my commitment to work harder for the best possible care and support for children and their families and to strive for treatment that is not just available to those with knowledge, resources and connections, but to all families.

From these experiences I humbly offer my thoughts:

·         First and most importantly, my deepest condolences to the family and friends of those killed at Sandy Hook Elementary. Also my thoughts are with the first and second responders and anyone near and dear to the families who are suffering through the loss of these beautiful children and dedicated educators. The reverberations of these killings are far and wide. My heart goes out to every responder, educator, medical health care worker, therapist, clergy and community member. The memories of these days will resonate long into their lives. I also send love to all the people, including the young woman injured by Barry Loukitas sixteen years ago, who once again are reminded of the agony they endured. May each person receive continuous, calm and loving support for many, many years to come.

·         My thoughts are also with the Lanza family. Whether it is true or not, headlines today read, “Gunman’s Mother Kept Trials of Home Life Hidden”. I have never known of a parent blamed for their child having leukemia. I have known of many, many parents who are blamed both overtly and covertly for the symptoms of a mental illness exhibited by their child. I have known many parents who will not share their concerns and issues concerning their child’s behavior if it is connected to a mental illness, a disability such as Asperger Syndrome, ADHD, Conduct Disorder or something not yet diagnosed. And, given it is behavior most affected by a mental illness, there is often a sense of blame for the actual illness. My daughter’s early and severe depressions and anxieties (as yet not diagnosed) were extremely worrisome. We did not know there would be an eventual diagnosis of bipolar disorder. Did we do too much? Not enough? Were we too close? Not close enough? There were those who subtly suggested that perhaps we shouldn’t have been so involved; perhaps she needed “tough love”. My daughter has a life-long illness that was critical and from which she almost died, more than once. Had she almost died from leukemia I believe there would have been a different level of support and understanding.

 

·         One of the biggest questions we get from people is what to do for a young adult who is refusing help. That is a question that deserves its own response and is complicated by the system of care currently in place in the U.S. People do not have to accept treatment, even if available, once they are eighteen years of age. Parents, family members and friends often can do nothing as their loved one is destroyed by an illness that can be treated. Mental illnesses cause behavioral changes and a change in “thinking”, which can mean that the person living with a mental illness does not realize help is needed. What to do? Connect with NAMI, The Balanced Mind and read information such as the discussion with Author Pete Earley. Honesty and hard discussions have been the most beneficial for our family.

 

·         Notice every kid every day. Know the symptoms. Here is an article that I wrote with colleagues that address these issues:  Don’t Turn Away: Empowering Teachers to Support Students’Mental Health My biggest wish and something addressed in every class I teach and every time I speak to audiences is that we need to have mental health curriculum in schools. We need to assure that children, adolescents, families and educators recognize symptoms of mental health issues in the same way they recognize physical health symptoms. Sore throat? Temperature? Lack of interest in activities that previously brought joy? Irritability? There is a national anti-bullying campaign and kids at all ages are embracing it. Let’s do the same with mental illnesses.

 

·         Please excuse one last thought in this overly long piece. Let’s all work together to eliminate the stigma, the shame and the disgrace that accompanies mental illnesses. My daughter, Linea, shared her very personal descent into depression and suicidal ideation and her equally terrifying manias in her journals. She shared those journals with the public. I cannot tell you how many times we have heard the words, “You (Linea) do not look like someone who…” and they stop in mid-sentence, embarrassed by where it is going. Does she “look” like someone who almost died by suicide? Someone who was in a psychiatric hospital three times? Someone who is tall, beautiful, articulate and living a stable life in recovery because of amazing doctors, treatment and support from family and friends? Linea did not have to share her illness with the world. Those who live well with mental illness do not have to do so. Often the public persona of mental illness is of those not living well, those living on the streets and those living without treatment. Mental illness and behavioral disorders affect one in four families. Please read and take the pledge to help end stigma at Bring Change 2 Mind.

We have an opportunity to move this national conversation from intense discussions as we try to understand the “why” to working together to identify “what” we will do and “how” we will do this. There is ample research on how to address this national issue. There are dedicated organizations and groups across the country working on this. Speak up and speak out. Offer help, resources and support to anyone (family, friend, co-worker, person living on the street) who is struggling with mental illnesses (and their family). As it is with every change in this country it is a both a bottom-up and top-down effort. Find your place in these efforts and contribute. Do something today to make a difference.

 

From Hospitalization to NPR

Yes, I know this blog is waaaay longer than is suggested by the blogging experts. If I blogged more often perhaps it wouldn't be! This was posted on The Balanced Mind Foundation. Check out this wonderful organization!!

It has been an incredible three months. It started in May with the release of Perfect Chaos, the book my daughter and I wrote together. This was followed by book launch events, national interviews, presentations, book readings and signings all across the country. Linea spoke in the opening session of the National Alliance on Mental Illness conference in June and received a standing ovation from over 1,500 people. A week later, she was hospitalized. She spent ten days in the psychiatric unit at a major hospital in Seattle. Shortly after her discharge, we were interviewed for Tell Me More, an NPR program that just aired on August 14th. The host, Jacki Lynden, caused me to reflect on this most recent stage of my life, a life affected by my daughter’s bipolar disorder.

“Were you angry after this last hospitalization?” Jacki asked me during our discussion. "It seems you have the right to be." I hadn’t really thought about anger but I think it was there, buried beneath many different and conflicting emotions. There was sadness, relief, fear, pride, anger, acceptance, hope and many more emotions that I will likely need my therapist to help me define. Yes, I was certainly sad that once again my beautiful daughter was hospitalized with a depression that was quickly escalating into the I-am-not-safe zone. “WHY??? WHY??” was running through my head, and this certainly may have been anger speaking. But I felt immense relief that she was receiving the care and treatment she needed. I also experienced a higher level of acceptance of this nasty illness and a strong belief, colored by past experiences, that her symptoms would be treated.

As well, I felt a huge sense of pride in her ability to care for herself and to ask for help when she needed it. We have been on a journey for more than seven years with a goal of Linea managing her health conditions. She met that goal. Her dad and I were out of the country when she knew she needed help. Linea recognized her symptoms for what they were, she put a support plan in place to ensure she'd be safe, she spoke with her medical team over a weekend when offices were closed, and she, once again, was completely honest with her family. We arrived home on a Sunday and she called to say, "We need a family conference." I went with her to her psychiatrist on Monday and she was hospitalized that afternoon. She even managed to call her medical insurance company just hours before her hospitalization to ask if she needed to do anything more than let them know what was going on.

It was also easier because we had all been through this before. I neither felt anxious when telling our family members and friends, nor did I feel compelled to provide support as they struggled to understand the illness and Linea’s symptoms. The phone calls and conversations took much less energy than during her previous hospitalizations. They moved into support mode quickly and efficiently.

There were still thoughts, deep in the night, about what brought this on and what could have been done to prevent it. Were the activities surrounding the book the cause? Was sharing our story the reason? Should we have not launched this book at this level of energy? Our dear friend Dr. Delaney Ruston (filmmaker, Unlisted: A Story of Schizophrenia) called me from across the country to see how Linea was doing. She said at first she was thinking that perhaps Linea was exhausted from all the book activities and then she said, "One of the main things I got from Perfect Chaos was that this illness is not caused by outside factors. Linea is ill because she has bipolar disorder, not because she didn’t do something good enough or did something wrong."

Managing one’s lifestyle, rest, sleep, stress, diet and exercise is an important part of managing bipolar disorder but it is not an absolute guaranteed cure. Linea is continuously learning to balance the life she wants with a chronic illness. This is a chronic illness that can be well-behaved, providing opportunities for a person to live in recovery. But it can also snap and snarl and need extreme attention until it can be tamed once again. When it causes problems, I do not want to give Linea the message that, somehow, it is her fault. She had been doing everything possible; lots of sleep, tweaking medications, seeing her psychologist weekly and her psychiatrist every two weeks, rigorously doing all the therapy suggested to her and yet, she still became ill again. She has a brain disorder.

Treatment worked once again and she is happy, moving back into work, having fun with friends again and relishing living in recovery. Will it last? How severe might the next episode be? When might it happen? We don’t know. If anything, bipolar disorder has taught us to appreciate every moment of health and happiness in all of our family and friends. Life is short, full of challenges and surprises yet, somehow I think we all live with seeds of hope inside of us somewhere; seeds wanting to fully blossom and allow us to live every minute noticing the good things, the small things, the kind people around us, the millions of moments we shouldn’t take for granted.

Listen to Linea describe where she is today on NPR’s Tell Me More! http://www.npr.org/blogs/health/2012/08/14/158768330/familys-fight-again...

June 29, 2010: What WERE we thinking?

I wrote this almost two years ago, June 29, 2010. I am fascinated reading this now, one week before the release of our book, Perfect Chaos (St. Martin's Press, 2012). It all still holds true!

One day after Linea's graduation we received an offer from a major book publisher for our book. WOW!! We were and still are ecstatic! First came the news from our agent that the editor wanted to talk to us. Two working days later we received an offer from the publisher and after a couple of days of back and forth with our agent we accepted it. We were both completely excited and the whole thing seemed impossibly surreal. The book proposal went into submission the week of June 1st and we received the offer the next week. Our agent told us the speed of this was quite unbelievable particularly in this current market but we attribute it to her ability to push us further and further with a better, more concise and compelling proposal. The excitement continues but the first night (very late into the night, actually) it hit me. This is the real thing. Our book will be published. In stores and on bookshelves across the nation and perhaps beyond. What WERE we thinking? Suddenly I was insecure. The "what if's" flew like bats into my bedroom and into my worrying mind. What if we had bad reviews? What would a negative comment do to my daughter? What if my colleagues thought I was not "academic" enough by sharing a very personal memoir of a devastating illness? I hadn't had such small (what about the cover??) and long-range (what will my grandchildren think about this twenty years from now?) worries since I the births of my two daughters. Around and around my mind went until finally it settled on trust in our work, our agent, our editor and the world at large. We are committed to sharing our story with continued efforts to increasing understanding and support for people with mental illnesses and their families and to reduce the stigma surrounding mental illness that adds another layer of pain to these illnesses. What a journey!

It's All in Your Head!

Are people more willing to pay to avoid physical illness than mental illness? The study might surprise you! I have been so busy with my daughter's and my book, released May 8th (Perfect Chaos - St. Martin's Press, 2012)! I haven't blogged much so thought I would share an article in which I interviewed with the author, Reyanne Weaver. It is a rather long article but I think also very interesting. Take a look at EmpowHer. It's not until the second page that I FINALLY get to give my opinion so if you are interested, keep reading!!

An excerpt, "“Neighbors and friends rally around someone with breast cancer while the doctors determine which treatment option is best based on sophisticated diagnostics,” Johnson said. “I do not believe the same level of support exists for a woman who is hiding in her home battling the overwhelming [effects] of depression.”

Fighting the Good Fight: When Insurance Won't Cover Vital Treatment

Here is a blog I wrote for my good friends at The Balanced Mind. If you haven't visited this wonderful resource, do so! The blog is a long one but it was a long "fight"!

I said that once the fight was over I would write about it. It is not quite finished, but, close enough! I was newly invigorated to write this when NBC Nightly News aired a piece recently on eating disorders and boys. The final comments included what parents should take note of and the caveat, “you may have to fight your insurance for coverage”. Well, yes. And fight we did. Here is the short version of a very long story and a two inch file.

My daughter was diagnosed with an eating disorder, and, after an evaluation, the recommendation was a 30-day partial in-patient treatment program at $1,000.00 per day. You can do the math. Our insurance company approved this treatment plan, but after careful research and discussion with the psychiatrist and psychologist, an out-patient wraparound team approach was developed. This included treatment from her psychiatrist, psychologist, eating disorder (E.D.) specialist and a nutritionist; as well as a significant commitment from family to eat every meal together for at least the first month. Linea met with her psychologist and E.D. specialist once a week. She met with her nutritionist twice a week for the first few weeks and then once a week. The insurance company covered three treatments from the nutritionist and then denied coverage. Why, you ask? It is the policy of the insurance company to cover THREE visits with a nutritionist in a lifetime. Yes, you read this correctly. 

If she had been in the in-patient treatment program, she would have seen the nutritionist once or twice a day for 30 days. The insurance company would have covered that. When asked why they wouldn’t cover the outpatient treatment from a nutritionist they replied, “We don’t have the codes.” Oh my! I was so irritated. After discussion with Linea (and her approval) I submitted an appeal to our insurance company with the following:

1. A table comparing the approved partial in-patient treatment ($30,000) with 30 days of outpatient treatment ($7,000), itemizing the costs of each treatment professional. As well, I compared the cost of 30 days of hospitalization if she did not receive treatment.

2. A letter from her psychiatrist referring to American Psychiatric Association guidelines, which state that eating disorders cannot be treated without a nutritionist.

3. A letter from the past president of the American Eating Disorders Association and her treating E.D. specialist stating the same, as well as the risk of long term treatment without the participation of a nutritionist.

4. A letter from her psychologist stating the same, and her opinion that the outpatient program would be successful, ultimately costing the insurance company less than the partial in-patient 30 day treatment program.

The appeal was denied. Reason (in case I missed it the first time): "The insurance policy provides coverage for only three lifetime visits to a nutritionist". "But", they wrote, I could "go to a second appeal". Okay, yes I will.

The second appeal, which supposedly went to medical personnel this time, rather than clerical, included all of the above and more documentation of the research on eating disorders, as well as letters that spoke of the disparity of services. Second appeal: denied. They wrote that I could talk to my Human Resources office. Okay, yes I will. By then, I was not going to let this go. After 3 months, at $110 per visit, it was adding up. More than that, it was discrimination, and it was offensive. The insurance company was overriding the treatment plan of my daughter’s doctor. Eating disorders are life-threatening. Recovery is possible with research-based treatment.

I approached the director of compensation and benefits in the HR office at my work place. Again, with permission from and discussion with my daughter, I provided him with the packet of information, and I added an additional letter. I compared treatment from a nutritionist for a person diagnosed with an E.D. to providing physical therapy to a person recovering from a stroke. THREE visits per lifetime??? I added, “I am very committed to assuring that people with mental illnesses receive the coverage and care they need as comparable to those with 'physical illnesses', even though we know that mental illnesses are a brain disorder and therefore are 'physical'. Thank you for supporting this and joining me in 'walking the talk' of social justice.”

The response from the HR director was, “My conclusion is that the nutritionist portion of the treatment plan described in (the psychiatrist’s) letter is eligible for coverage under the University’s PPO medical plan. We judge these services to be medically necessary. Our office will instruct (the insurance company) to take necessary steps to reprocess claims submitted by the nutritional therapist, and to prepare the claim system to accept future related claims that are submitted according to the same treatment plan.”

Of course, there was one more roadblock to slow us down. All the invoices had to be resubmitted, and since these were already paid for, I had to send invoices showing this. The reimbursements were processed again, one-by-one and very slowly, with checks sent to the nutritionist, who then had to run these through her business and send me a check. You can see why most people just give up. I would guess that most young people in the midst of an illness like this would not be able to fight this system. Hopefully, there are family and friends that they can ask to help and that can push back at the health care system.

The entire process took over a year to resolve. I am still waiting for the last two reimbursements. I had no idea that my HR director could assist with this. I had no idea how much effort, time and documents it would take. Please share your experiences of seeking and getting the coverage that your child deserves. Help those who can’t figure this out on their own. Together we can make a difference.

Finding Peace

Parents often don’t have time to reflect (or treat) the toll their child's illness is taking on them. Mom and/or dad are too busy trying to manage medical treatment, the emotional impact on siblings and other family members, and one-on-one care for their child. When a child or adolescent has a mental health crisis, it affects the entire family.

As a parent of a child who has been critically ill with a mental health disorder, have you experienced any of these symptoms? Read more at The Balanced Mind.

It Was More Than Teen Angst...

Depression affects students of all academic levels, social positions and economic statuses.
Depression in children and teenagers has devastating impact on the crucial stages of social, emotional and cognitive development, with far-reaching and negative impact on these young lives.

One in five young people have some sort of mental health condition; one in eight has a serious depression.

Despite these daunting statistics, a mere 30% of these students receive any sort of intervention or treatment. The other 70% simply struggle through the pain, doing their best to make it to adulthood. If this were the case with child and adolescent cancer there would be an outcry from the public.

I know these statistics well. I know that educators have a unique opportunity to recognize and support students struggling with depression yet often are either unaware or simply aren’t sure of the severity or need for intervention and therefore do nothing. Parents may well be in the same camp. Is it “teenage angst”? Growing pains? Typical of a child who may be in the middle of a family crisis? A young person having problems with friends, feeling left out or deserted?

My daughter’s depression snuck into her life during her high school years (if not before) and even though I was teaching about depression to graduate level students, I did not recognize it for what it was: severe, life changing, and needing intense treatment. Yes, I knew she was anxious and sad and confused about her friends and their own issues. I knew she worried about where and what life would hold after she graduated from high school.

I was concerned enough to talk her into seeing a psychiatrist and therapist. Both diagnosed her with depression. The very words “clinical depression” startled me. She was still getting high grades in college preparatory course, participating and excelling in piano and voice as a young musician and keeping up with her friends and activities. She spent a few months taking an anti-depressant and then, unbeknownst to me, dumped the remainders down the toilet. We spent hours talking and she cried and she said she felt better and then she worried and then she thanked me for listening to her. We all assumed it was “situational”. Whatever the cause, it was depression.

I have had a unique opportunity to reflect on this as I was working my way through the final edits of the book that I wrote with my daughter, Linea. Her work is “real time” journals written in the midst of her depressions. As I read her words and mine I thought about what I should have done differently and eventually thought about what I did well, from a mother’s perspective, not a professional’s.

There were a couple of things I would have done differently but they are both big ones.
I assumed she knew that if she did not like the first therapist she saw she could go to another one. She didn’t know this. And if she did it would have been very difficult for her to change therapists or doctors without a lot of support from me. She didn’t know she could, she didn’t know how and she didn’t want to hurt anyone’s feelings.

I would have been much more cautious about her depression and encouraged (harassed? forced?) her to continue under a doctor’s treatment for much, much longer. As she says now, “Everyone benefits from a therapist!”

I think I did a couple of things right and Linea certainly contributed and taught me many things during our journey. We had and continue to have a very honest relationship. I know she didn’t tell me everything and it was only after reading her journals that I knew how severely depressed she was but she did talk to me about her worries and fears. I tried to never be judgmental or shocked by anything she told me or anything I read. I always trusted her to do the best she could and I always believed in her fierce desire to be well but I eventually realized that the depression was way beyond what she was able to handle on her own. It just took me too long.

My knowledge and understanding of the research and treatments for depression have shifted due to my personal experiences as a mother as well as a daughter of beautiful and strong women who battle depression. Depression is a brain disorder. Yes, there is situational depression but this, too, can turn into a depression that changes the thinking process, messes with memory, pushes away friends and family, causes physical symptoms and, as my mother says, is “more painful than any physical pain” she has ever experienced. And she has experienced much physical pain in her lifetime. I spent too much time trying to manage and “fix” the environment around Linea rather than helping her find the treatment to fix the illness going on in her brain.

I am thrilled with the Balanced Mind’s new partnership with Erika’s Lighthouse. I am moved and inspired by the voices of the young people featured on the videos. I encourage all of you to share with others and take full advantage of the webinars, resources and materials available about depression. Let’s make sure that our young people who have depression receive treatment and that everyone knows the symptoms and where to seek treatment for depression. Depression is treatable. Untreated depression is deadly.

Posted on The Balanced Mind blog.

Should I have known?

I am immersed in the edits of the book that my daughter Linea and I have written together about our journey through bipolar disorder. As I work back through more than 300 pages of writing, I am struggling with the questions that the editor keeps throwing at me in the margins.

“How did your daughter convince you she didn’t need to see a therapist?”
“How did she talk you out of seeing a psychiatrist for two more months?”
“What were you thinking when she convinced you she was feeling better and that she should go on her planned trip outside the U.S.?”
“How were you so shocked by a potential diagnosis of bipolar disorder when you teach about it?”

I had to give a lot of thought before formulating my response. How had I not known?
When an illness is beginning its invasion, it can enter quietly, mysteriously, or with great fanfare. Reading back through the chronicles of the years leading up to her diagnosis, yes, I can now see it coming during those early years. But at the time, we never suspected a severe mental illness was on its way and that it would try its best to destroy her. I am sure you know exactly what I mean as I struggled with this.

In that time and place, I think we convinced ourselves that it (this depression, soon to be diagnosed as bipolar), was due to stress from school, worries about her future, fears for her struggling friend, all wrapped up in her drive to do and be her best. In looking back, there were indicators of what was to come but at the time these were merely hazy suggestions, whiffs of a more serious illness lurking.

After many discussions of a diagnosis and a major crisis, we met again with Linea’s psychiatrist. Linea sat there without speaking and I finally asked him, “How will we know if it is bipolar disorder?” He said, “We will have to wait and see.” I felt like I couldn’t breathe and my heart hurt as we left his office. Wait for what? It felt frightening and overwhelming and I didn’t know if I could keep from simply lying down on the floor and weeping. But I didn’t, and together we all “waited”. Eventually the pieces came together, the diagnosis aligned with her symptoms, and the treatment began to work. There was hope and recovery and stability.

I share this because I know now that we did the best we could given how this illness unfolded into her life. I also know that we wouldn’t have done anything differently had we known. We were present to her and with her, we listened, we waited and we trusted her to ask for help when she could, and when she couldn’t we made decisions for her. It has been painful, and I would give anything for my daughter not to have this diagnosis, but I also know that it has changed us all in many incredibly positive ways. She is an amazing young woman and every day I am so very grateful for her life. I wish you peace in your own journeys.
(posted on the Child and Adolescent Bipolar Foundation website under Blogs)

If it Doesn't Feel Right

Bipolar disorder takes a family on a roller coaster of brain-driven moods right along with their child. In addition to the depression, the anxiety and mania, there are other symptoms that raise their fearsome heads and go after our children. Parents of children under the age of 18 are responsible to manage the many aspects of this illness and to help their adolescent move into adulthood with the skills to do this on their own or to have a support team in place for times when this is not possible.
I write this post without offering words of wisdom but rather to simply share a recent episode in our own lives with the hope of building community and perhaps offering encouragement to hang in there when times are tough.
My daughter, Linea, had been relatively stable for the last few years but as the leaves began to turn and our part of the world prepared for winter, depression and anxiety crept back and were soon running over her life. An eating disorder emerged and she began to rapidly lose weight.

ED had stalked her in the past, but it hadn’t received the treatment it deserved. At the time we either weren’t aware of the severity or it retreated before causing us to take too much notice. I think in the midst of her other symptoms it was lost amongst the rapid cycling. Now it was front and center.

Something Wrong
It took a few weeks but it suddenly hit me very hard that something was seriously wrong and needed to be addressed. There was a confrontation and discussion and a plan to seek serious treatment for her. Once again I was into something that I “taught” in my graduate classes but I realized I knew little about the research behind the treatment. She had an evaluation at an eating disorder clinic where she was diagnosed with ED. Seeing the words on paper was shocking. Hearing the statistics on outcomes for people with anorexia was terrifying. We were told that the severity of her illness demanded a partial inpatient 30-day treatment program (at the cost of $30,000.00 minimum). We were frightened and believed that these “experts” knew what was best.

But, I couldn’t sleep. Linea was so exhausted from her illness that she no longer wanted or could make decisions. I spent two days calling her treatment team and anyone else I knew in the field of ED.

Researching Treatments
My research on treatment strongly pointed to “individualized plans” that addressed the specific needs of a patient. Linea didn’t just have an ED, she had bipolar and her own unique temperaments and personality that didn’t seem to fit into the treatment program I observed at the eating disorder clinic. Finally we put together a wrap-around program for her that included her psychiatrist and her psychologist, both providers who she had been seeing for five years and who knew her well, and a nutritionist and additional psychologist, both who specialized in eating disorders. Everyone worked together. Communication was a key component. Her plan included not only therapy twice weekly, but documenting everything she ate and being held accountable for “turning the train around”, as her nutritionist described it. It meant eating lunch and dinner with family or friends every single day for at least two months or until her weight was stable again. This was a huge commitment on everyone’s part but once this plan was made I slept through the night. It felt right.

Although Linea is a young adult, living independently and managing her health care, there are times when help is still needed.

Happy Ending?
I was thankful that she was so open with us and asked me to go with her to doctor appointments and to the initial evaluation. The week of hesitancy and unease about the treatment plan was difficult as I tried to support her but still listen to my own feelings or intuition about the plan. It didn’t feel right and I have to say that it took a lot of courage for me to push back against the “experts” at the eating disorder clinic.

Linea has gained the weight back and, although she is still receiving treatment for the ED, she is once again in control of her illness. From her initial grief and anger about it “coming back” she has new skills, confidence and strength in managing her illness. I, too, was hit hard by the reminder that bipolar is life-long but was once again thankful that we have the resources to provide treatment. I am more committed than ever in the fight to assure everyone has such support.

The Insurance Company
Stay tuned for an update…I am still fighting the insurance company about paying the nutritionist. They initially approved the ED treatment program that included a twice daily meeting with a nutritionist but it was “built into the total cost” and didn’t have a “code”. Our plan changed January 1, 2011, to “three visits to a nutritionist in a life-time; exceptions made for diabetics”. Oh yeah?!?! The American Psychiatric Association states that ED can’t be treated without a nutritionist. I have submitted an appeal that includes letters from her psychiatrist and psychologist. I made sure they knew how much less the plan we put together cost in comparison to the partial in-patient program. I also pointed out to them how much less expensive it was than hospitalization. The appeal has now been moved up to the next level. We shall see….

I suppose I can’t resist a bit of advice. You know your child best. You are the expert. If it doesn’t feel right gather all the strength you can find and do some research and speak up. Share your story with others so that together we can make a difference in the system of care for children with mental illness.

Published on the Child and Adolescent Bipolar Foundation's Blog.

There are no guarantees....

Mindfulness is the aware, balanced acceptance of the present experience.
It isn't more complicated than that.
It is opening to or receiving the present moment, pleasant or unpleasant, just as it is,
without either clinging to it or rejecting it.
-Sylvia Boorstein

If one lives long enough, it becomes clear that there are no guarantees in life. There are moments, days and weeks when the lack of control feels overwhelming. This seems particularly true when a loved one is struggling with a chronic illness. I have a mother and a sister struggling with autoimmune diseases. My mother has fought this battle since my earliest memories. I lost a brother to suicide. Every family walks with joy and pain, wonderful bounties and excruciating losses. I often need to remind myself that facing these issues is as emotionally painful for me as anyone else around the world, yet my burden is lessened simply because of the luck of the draw. We are an upper middle class family born in a country with many, many resources. Things could be so much more difficult if we were living in poverty, didn’t have family and friends’ support, couldn’t read or write or speak the community language.

My daughter lives with bipolar disorder. Sometimes she “has” bipolar disorder and sometimes she “struggles with” bipolar disorder and, yes, sometimes she “suffers” from bipolar disorder. Yet it is still a painful struggle, not only for a person facing a chronic illness every single day, but for those who love him or her. I, too, have various relationships with her illness. When things are going well I am particularly aware of our incredible blessings or luck or whatever you want to call it. Yet when my mother falls or my sister struggles with new symptoms I find it difficult to count my blessings while fighting the worries that well up from my heart. When my daughter’s illness takes her into bumps or dips or even on roller-coaster rides I struggle against fear, anger and grief. Yet, I have no control. There is so much that I can do but also so much that I cannot. I cannot fix it or make it go away. I have tried negotiating with my Higher Being when my daughter was the sickest: “Give it to me. Let me have it. My daughter is young and just beginning her life. I can handle it.” But the answer is always, “No, sorry, not possible.”

Finally and ultimately I have no choice but to simply accept it. As a colleague once said about his relationship with his very ill son, “Sometimes all I can do is sit by the swamp with him and just be.” Just be. A concept so very difficult but something that I try to practice every single day. A concept exceedingly tested by the experiences of living with a chronic illness. I also remind myself that there are many positive and wonderful things that have come from this journey. Sometimes these are difficult to remember but so true: honesty, love, deeper friendships and relationship, commitment, strength, humility and patience. There is wonder at the strength of the human spirit of my daughter, my mother and my sister to move forward when faced again and again with incredible pain and worry beyond my own experiences. We are in this together. I will continue to work towards acceptance and embrace the simple joy found in the love of my family. I wish you the same.

From my blog at Child and Adolescent Bipolar Foundation.

Help Children and Youth with Bipolar Disorder: Just a Minute

I spent a few days in New York City recently and met some amazing women who have changed the world in small and big ways. I was there to meet with our editor as well as attend some events for mental health advocacy. The evenings were spent talking with women who "get" what it means to have a critically ill child. There was also much laughter amongst many the tears. I am inspired once again to continue working towards better lives for children and adolescents who have mental illnesses and their families who are with them every day. One mom had just put her son in a psychiatric hospital for a suicidal overdose. Another mother's adolescent was on the verge of hospitalization and in that frightening time when the family is responsible for keeping her safe and determining what to do next. Another mother had a small moment of relief because her young child had become stable enough to stay home with only one parent to keep watch, allowing Mom to go to New York. In addition to full time care of their children, their jobs, other family members and much, much more, ALL OF THESE MOMS SUPPORT OTHER FAMILIES! One mother started a national response team for families of children with mental illnesses. One directs a large national program for research and support for young adults and children with mental illness. One manages a large volunteer organization dedicated to providing support and resources. Every woman at this table is directly involved in supporting children with mental illnesses and their families. Every woman has personal experience with these illnesses in their own families. All answer phone calls and emails and cries for help each and every day (and night and late at night). National mental health organizations were started by such women. The work continues every single day. These women are brilliant, capable, loving, dedicated and more often than not, exhausted.

One such organization is the Child and Adolescent Bipolar Foundation. This organization is in the running for $250,000.00 from the Pepsi Refresh Challenge. Scroll down and check out the video (made by a mom with help from her daughter!). Then VOTE for these kids and their moms. The work this organization does changes countless lives, supports thousands of families and continues to push for more research and support for the millions of children with mental illnesses. Voting takes only minutes from your life (and you won't be on anyone's spam list). Mental illnesses takes huge amounts of time away from the lives of these children and their families. Vote if you are a dad, a friend, a co-worker, a young person or anyone else. Vote in solidarity with these brave, resourceful and dedicated woman.

Mental Health Awareness Week: Can I Use the Word BREAST?

Mental Health Awareness week is October 3 - 9. Have you noticed that there are many, many people wearing pink in October for Breast Cancer Awareness month? Pink stays with us most of the year in one way or another because of the inspired breast cancer campaign. The breast cancer campaign has successfully led the way for many other campaigns including heart, diabetes, prostate cancer and others. Decreases in deaths from breast cancer are partially attributed to the result of treatment advances, earlier detection through screening, and increased awareness, certainly with great contributions from the campaign. There are campaigns designed to do the same for mental illnesses. What are the similarities between the two?

First, let's make it okay to talk about mental illness. It is not an illness to be whispered about nor hidden between the generations and family members. Just like the word "breast" was once taboo in most environments, mental illness still has the power to make many people look away, turn away or at least feel very uncomfortable.

Early screening and knowing what to look for is the second critical aspect of these two campaigns. Just as we teach women to be aware of their own bodies and health, we need to teach all people to be aware of mental health conditions. And, we need to start very early. Parents and teachers should be knowledgeable partners in screening for emerging mental health issues and know exactly what to do and who to talk with if something is amiss. Our children should be taught about mental health just as we teach them about nutrition, general health and sex education.

Thirdly, just as with the breast cancer campaign, we should be talking about and teaching prevention. As with cancer, mental illness is not the "fault" of the person but there are things that build resiliency and help to prevent worsening of symptoms. These are quite similar to any prevention program: eat healthy meals, get the right amount of rest, exercise, have meaningful work or avocation activities, develop and maintain good friends, have a positive social life, and find some purpose either from faith or spirituality or commitment to something beyond one's self.

Finally, find the best treatment possible. Unfortunately this may be the most difficult to achieve. With treatment and support, mental illness is not the "sentence" it has been in the past. Recovery and stability is possible. The days when someone faced certain death from a diagnosis of breast cancer is no longer the case. The same is true with mental illnesses. We face huge challenges across the nation to assure treatment is provided for everyone with a mental illness. In Washington State the growing deficit has negatively impacted the most vulnerable. DSHS is slashing away at services for the mentally ill. What would you do if your mother was turned away from treatment programs if she had breast cancer?

We have a long way to go in treatment for the mentally ill, particularly those without strong family or advocate support. This fourth step is paramount to recovery. Mental illness affects the entire family and I know how priviledged my family is with the care that my daughter receives. Let us all turn to our family, neighbors, fellow employees and community and assure that mental health awareness and treatment is as readily available as a mammogram. To learn more check out NAMI's site. 

Consumer or Hero?

I just returned from the Washington State NAMI (National Alliance on Mental Illness) conference where my youngest daughter and I were honored to present to a wonderful audience of people from all over the state. Our topic was entitled, "From Trauma to Empowerment". Our audience included professionals in mental health care, family members and "consumers". Isn't that a strange word for someone who is living with a mental health condition? A consumer is someone who uses services or buys products.  So, yes, many of the people at the NAMI conference are indeed consumers. They see psychiatrists, psychologists, medical doctors, therapists, vocational rehabilitation specialists, clinicians, dietitians, etc. etc. and more etc. They purchase medications, therapy, yoga, exercise sessions and much more. But in addition to "consumer"

I would call every person with a mental health condition a hero. Personally I have witnessed most of what my daughter has gone through with her diagnosis and treatment of bipolar disorder. As her mom, I, too, have been "brave" but nothing close to what is called for from those in the trenches of mental illnesses. I spoke with so many people at the conference for whom each and every day takes the utmost strength and courage to move through it and forward to the hope and possibility of recovery. These heroes include the R.N. who has struggled for the last three years to treat a severe and debilitating depression yet managed to get herself across the state to attend this important conference. It includes the man who has moved into stability, helping others with their own illnesses. He achieved stability, finally, after years of attacks from schizophrenia, forcing him into the fog of a broken mind and without the ability to live the life he has today. The heroes include the people who were not there, but represented by loving family members. These people struggle through each day in a treatment facility, very aware of the pain and anguish of illnesses that knock one off center and force a tenacity of spirit that most of us have never known.

When an illness strikes the body we muster our forces to manage it. We read and study and ask questions and find support groups. When mental illness strikes, the attack on the brain may not allow for the person to put together a "wellness plan". It may only be possible to make it through one day at a time. Bravery. Courage. And, once a person is approaching some stability, they must continue with this amazing strength to continue treatment, stay steady and fight each day to be well. Most of the people at the NAMI conference are not only in this fight for themselves but for others. Each day they live as heroes, in their own lives and for other individuals and society as a whole. If you aren't aware of the work that NAMI does consider joining, volunteering and/or donating. I cannot cheer loudly enough for the heroes in this battle!

Tell me why? "...disarming all hostility"

Linea and I are reading our book again, preparing to work with our editor in September. As I read I often need to stop and walk around for a bit, drying my eyes, and centering myself back into this safe place in which I currently reside. Reading it pulls me back into all the fear and uncertainty yet I know there is a hopeful ending. I read a few passages that remind me again why we chose to share our most private lives, agonies and all. The following excerpt was written during Linea's first hospitalization. We are in the psychiatric ER in the largest trauma hospital in Seattle:

"We are finally called into the lock down unit of the psychiatric ER to stay with her. There is no information from anyone. There are no windows. The doors are locked. The nurses are harried. The three of us sit in a tiny room with a gurney and one chair. We don’t know what to expect or what we should expect so we wait. A nurse comes in briefly and answers our questions by telling us she has no information.

As we wait in the ER we listen to the nurses as they determine that two of the patients will need to spend the night on gurneys in the hallway because there are no mental health beds available in the city or anywhere nearby. These patients are homeless and there is no place for them to go. They have no mother or father or aunt or son or friend with them to campaign for their treatment or figure out the “ropes”. Alone, they face a dense maze of very dangerous ropes.

Even as sick as Linea is, she is aware of the inequity of the mental health system and her own strong sense of humanity pushes through her illness. Linea questions why she, an upper middle-class white girl with no obvious problems in comparison to these patients, should be the lucky one and get a bed. She questions whether she should have told her doctor how sick she was.

“I shouldn’t get the bed. Tell them that I can stay in the ER tonight. Let someone else have my bed. I can go home with you,” she cries. She becomes more upset as decisions are made on who will stay and who will go.

As we wait, we listen to a man at the end of the hallway sob and cry and weep off and on for hours until his sedation kicks in and finally all is eerily quiet from his room. At this point in our journey I am not yet used to grown men crying like children who are hurt and want their parents, believing their pain will never stop. It is only the beginning of my education in this kind of pain."

Linea was in the psychiatric unit of the hospital for much longer than a "night or two" as we initially had hoped. Over the next month she became an intimate member of a group of people whom most turn away from on the streets and elsewhere. I, too, begin to know these patients as people. People who deserve much more than they receive. People who deserve care and understanding, support and....love.

Would someone suffering from a heart attack in the U.S. not be able to find a bed or treatment? Would a mother be too embarrassed to bring her daughter clean clothes if she were in the hospital for a kidney stone rather than a depression?

If we could read the secret history of our enemies, we should find in each man's life sorrow and suffering enough to disarm all hostility (Henry Wadsworth Longfellow)

What WERE we thinking?

One day after Linea's graduation we received an offer from a major book publisher for our book. WOW!! We were and still are ecstatic! First came the news from our agent that the editor wanted to talk to us. Two working days later we received an offer from the publisher and after a couple of days of back and forth with our agent we accepted it. We were both completely excited and the whole thing seemed impossibly surreal. The book proposal went into submission the week of June 1st and we received the offer the next week. Our agent told us the speed of this was quite unbelievable particularly in this current market but we attribute it to her ability to push us further and further with a better, more concise and compelling proposal. The excitement continues but the first night (very late into the night, actually) it hit me. This is the real thing. Our book will be published. In stores and on bookshelves across the nation and perhaps beyond. What WERE we thinking? Suddenly I was insecure. The "what if's" flew like bats into my bedroom and into my worrying mind. What if we had bad reviews? What would a negative comment do to my daughter? What if my colleagues thought I was not "academic" enough by sharing a very personal memoir of a devastating illness? I hadn't had such small (what about the cover??) and long-range (what will my grandchildren think about this twenty years from now?) worries since I the births of my two daughters. Around and around my mind went until finally it settled on trust in our work, our agent, our editor and the world at large. We are committed to sharing our story with continued efforts to increasing understanding and support for people with mental illnesses and their families and to reduce the stigma surrounding mental illness that adds another layer of pain to these illnesses. What a journey!

Dearest Daughter, A Love Letter on Your Graduation

As we approach your graduation week-end I think about all the love letters we have written each other over the years. You have written me letters from joy and pain, excitement and anguish. I have written you love letters during both the happiest and the darkest times.  How proud we were when you graduated from high school and soon left Seattle for Chicago, a scholarship in hand and a goal to complete a degree in music performance! Yes, there was fear and long, anxious talks with plenty of tears while you struggled to decide where to continue your musical studies. Depression crept around the edges of your life and sometimes moved in to flatten you but mostly you held it at bay. Once you decided on Chicago there was no stopping you. Your dad and I were astounded at your success your first year in your program. I had many opportunities to watch you perform and navigate your college, the city and your life. I felt so much pride in your independence!

The second year of college your life and ours was torn apart by an insidious and unexpected disease. It was not in "the plan", was it? After the pain of almost losing you, the fear of "what's next?" and the gradual acceptance and partnership with this new way of life, you have moved forward, taking us with you. Life changed for you and for us as you eventually changed majors and universities and continued to pile up classes in the arts, philosophy, literature, poetry, and wrote and wrote and wrote some more. Can you believe that throughout all of this we wrote a book together? You opened your heart and soul to me and soon, to the world. I learned so much writing with you. You have taught me to push outside of my comfort zone, to question my thinking, and to trust your brilliance, maturity, and wisdom.

But here is the point of my love letter. Yes, plan for your future but don't miss a single moment of today. You are truly special. You are unleashing your power on the world. Relish each moment. You are surrounded by love. Not only Mama and Popi but your fierce-loving sister and little Thomas, who's worship-love for you will only grow over the years. The two grown boys have your back and would do anything for you. We will never leave you. Yes, you are surrounded by love. You have done more in your life already than most people your age and there is so much more to come. Oh, my youngest baby, I have told you this so many times and if I could give you any gift it would be: Trust the Universe. There is a plan for you and you need do nothing but stay authentic, honest, brave and open. Love, the Mama
    Relish each and every moment in time.....

Empowerment!

Self-determination is incredibly important for the success of children and adolescents with or without disabilities as they move into adult life. I like this defination, "the ability to identify and achieve goals based on a foundation of knowing and valuing oneself" (Field & Hoffman). I teach my graduate students the importance of self-determination but these last few months I have been thinking about the next step beyond self-determination: empowerment and advocacy skills. These skills can be used to change inequalities, stigma and misconceptions about disabilities but also can be extremely positive for the individual. I have watched this occur over the last four years with my daughter Linea. From my perspective, the first part of her journey was to accept and acknowlege her diagnosis of bipolar disorder with a few steps forward and some backwards as she learned to manage a chronic illness. She has written about this journey in her blog. Eventually and sometimes simultaneously, she began to know and value herself in this new reality. She moved toward identifying and achieving her goals which included a strong commitment toward social justice. The memories of the inequalities we witnessed in the mental health system strongly influenced her. It has been amazing to watch her find her voice and to use her power. As she joins a large and national movement to eliminate the stigma of mental illness and assure understanding, support and resources for others she has become confident and powerful yet has maintained her humility and kindness. (Check out her post as a writer on the BringChange2Mind blog.)

The National Empowerment Center actually conducted research on the definition of empowerment in the mental health world. It includes 15 qualities of empowerment. An example of just 5 of the 15 include: 1. decision making power, 2. access to information, 3. feeling part of a group, 4. changing others' perceptions of one's competency and capacity to act, and 5. change that is never ending and self-initiated. Linea demonstrates all 15 of the qualities defined in this research. I am not sure how she moved from the initial diagnosis to empowerment. It is certainly a developmental process and support, resources, opportunities and her own temperaments and brillliance likely figure into this. Although not everyone has these opportunities I do believe we should ensure that all of our young people (and others) have the opportunity to be not only self-determined but empowered within their own lives and in their communities. This occurs through small, individual changes with a big impact on the world at large!

To Emily

Sunday was the National Alliance on Mental Illness (NAMI)/BringChange2Mind (BC2M) walk to reduce the stigma of mental illness and raise funds for research and support for people with mental health conditions. This walk was particlarly poignant for many reasons and one was because of Emily. Exactly four years ago on May 15th, daughter Linea was released from the psychiatric unit at Harborview Hospital. She had been there for a month and for part of that time she was on a 24-hour watch, a suicide watch. Someone was watching her every move, night and day, minute by minute. The hospital assistants (lovingly referred to as the H.A.s) perched beside her bed, by the bathroom door and anywhere else close at hand in the locked-down psych unit. It was often painful for us to talk with our daughter and often emotional conversations. Adding to the discomfort was a stranger two feet away, pretending to read, but whether they wanted to or not, intimately involved in our painful lives. Emily was one of Linea's H.A.s. She was not much older than Linea and attending a nursing program while working at the hospital. She treated Linea with care and respect and she made us feel "normal" in a very frightening world. (Wow, tears are falling on my keyboard thinking about this...Emily, you were our anchor and didn't even know it.) She not only gave our family the message that this was not the worst thing in the world but that there was hope and treatment and recovery. Emily was young and certainly could relate to a young woman who's life had fallen apart yet she didn't flinch. After Linea was released, still reeling from her treatment and into a very shaky recovery, many of her friends deserted her. Not because they didn't care but because they didn't know what to do. About a month after she was home from the hospital, Emily invited her to a dance. Linea went and, once again, felt "normal". They hadn't seen each more than a couple of times over the last four years but connected through Linea's advocacy and the NAMI/BC2M walk. Four years later....Emily walked with us on Saturday and life once again comes full circle! Linea was the team captain, leading us to raise more than $5,500.00. Emily is now married to a wonderful man and has a darling baby girl soon to be one year old. She finished her nursing program and continues to touch peoples' lives in ways that she will never completely know. Linea, her dad, her sister Jordan and I were so touched to have her walk with us. I would never have imagined this four years ago. Treatment, recovery, stability, advocacy, voice, power, family and love. Emily was part of Linea's treatment, not just by keeping her from harming herself but by believing in her and us. Thank you, Emily! You are loved!

Stay tuned for more from the WALK!