Friday, August 14, 2009

Today I spoke at the dedication of Rain Garden apartments

Today I was honored to be asked to speak at the dedication of the Rain Garden apartments at Villebois in Willsonville, Or. This is the latest housing unit built especially for those who live with Mental Illness in Clackamas County, Oregon. Following is the text of my speach today:

Have you ever stayed up for 24 hours without sleep? 48 hours? Maybe in college you partied all night and into the weekend. How did you feel? How did you act? How did you look? Could you easily perform normal tasks like reading a chapter in a text to prepare for a test? Living with mental illness is often described as always feeling like this, day after day, week after week, year after year.

Think of the saddest day of your life. Perhaps when your first love broke up with you. Perhaps when someone you loved died. Your parents, your child, or even a beloved pet. Perhaps it was the saddest several days in a row. Depression, a mental illness, is like the saddest days of your life, EVERY DAY, for weeks, months or years at a time without relief.

We trust our brains to tell us the truth, what we see, what we hear, what we understand as reality. Today our brains tell us we are at the Grand Opening Ceremony for Rain Garden. We believe that. Why not? Would you argue with yourself that you were not really here? Maybe at a movie or perhaps enjoying a barbeque party? Of course not. But what if when you went to your home this afternoon, made yourself a sandwich with your bread and jelly from your refrigerator and then went into your living room, sat in your chair and turned on your TV to watch your favorite afternoon TV show. Then suddenly someone bursts into your home screaming at you that you were in their home, eating their food, sitting in their chair and watching their TV! They call the police and you are arrested and tossed in jail for trespass and burglary. In your own home! Or so your brain told you. Mental illness is like that, this really happens, all too often.

Can you begin to imagine the confusion, the pain, the sadness, the horror of living with a mental illness? Mental illness not only effects that way your brain thinks and processes information it takes away your own sense of self worth, makes you ashamed of yourself and because of that, often separates you from those who love you the most, your own family.

I talked to a talented artist who lives with mental illness yesterday. She told me that although people think she looks normal on the outside they don’t see that her brain is “in a wheelchair.”

Living with mental illness in this time is akin to living with Leprosy 2,000 years ago. You are made to feel unclean, unwanted, unloved and personally responsible for your situation.

Stella March, who founded NAMI StigmaBusters, says: “…stigma keeps families from accepting a loved one’s illness and seeking treatment for them, and it also marginalizes those who are afflicted. Why else would it be socially acceptable for them to sleep on filthy and dangerous streets? Would anyone tolerate an outdoor dumping ground for victims of cancer, ALS and Parkinson’s?”

Without available housing people are kept in jail cells because the judges don’t, or can’t, release someone to the streets just when they are making progress in their recovery.

All over the United States our jails have become the housing for our people who live with mental illness. Jails that are not equipped, or able to provide the medical care necessary for someone who lives with a mental illness.

I don’t tell you these things to make you feel sorry for those who live with mental illness, I tell you so you can more understand the disease. It is my hope that you also feel more compassion for those who live and suffer daily with this sometimes invisible, sometimes all too visible a disease.

You see, you don’t need to feel afraid of someone who is filthy and standing on a street corner yelling at no one you can see. You have no reason to fear people who live in this housing in Villebois. They may act different sometimes, but they are not dangerous people. For statistically you really have more to fear from the executive in a suit who stopped at the bar on his way home to wash away his troubles.

Today I think of my heroes. Those many people who made it possible for us to be here today, who made housing for the mentally ill a priority in Clackamas County, who fought the hard fight in the courts and in Salem.

Dana Tims wrote in the Oregonian yesterday: “Rain Garden, along with two group homes and two apartment complexes for adults with mental illness, is situated squarely among the 700 upscale houses and condos at Wilsonville's Villebois "urban village." Developers, along with state and county mental health experts, say this is the first place in the United States where mental-health housing was part of a larger master-planned community from its inception.”

A mother wrote me an email yesterday telling me how her child had spent 7 years locked up in the Dammasch Hospital. Her child was convinced their life would end in that hospital. Her child now lives here in Rain Garden. Today a life is changed. This is but one of the stories we will hear and share because of what has been accomplished here in Villebois.

Today I’m proud of Clackamas County for what has been accomplished, not only here in Villebois but in other parts of the County, such as at Meadowlark and at Fisher Ridge, in Oregon City, just to mention a few. There are many, many people who have put in hours and hours of volunteer time for our loved ones.

Clackamas County will soon be a model to the whole State of Oregon, if not to the whole United States because of work in progress today. Sheriff Craig Roberts’ Mental Health Summit is working hard to change the way we respond to those who live with mental illness from mostly a response to a crisis to a more proactive form. We must change from only providing services to those who are “a danger to themselves or others”. For the disease of mental illness, when left untreated, progressively gets worse and worse and less likely to respond to treatment. We must find a way to help before the disease progresses to that point in the first place.

Cindy Becker, the director of The Division of Health Services, and her staff are working hard to redesign the Behavioral Health System to better serve those we love. Her goal “To provide the best outcomes for the most people within available resources” will be the foundation of a much improved mental health system. A system which is being built with listening to the input of the whole community.

But this is only the beginning. For there is much work left. This project here today is not really done. For the promised infrastructure remains to be completed. It is difficult for those who live in Villebois to get the basic necessities of life, to get to their Dr. appointments and the like. The promised public transportation facilities and community recourses are still not here. Living here can be very isolating. My challenge to this community today is to finish what was planed, what was promised. Make it easy for those who do not drive their own automobiles, and otherwise find it difficult to get what they need, to live comfortably and without stress in this community. Food, recreation, and many other things, so many of us take for granted, are difficult when living in a community still a bit far into the suburbs.

And what can you personally do? I challenge you to stand up and be heard when you hear someone spread misinformation about mental illness and it’s causes. Take the free Family to Family class offered my NAMI and learn more about mental illness. Read Pete Earley’s book, Crazy. Read Steve Lopez’s book The Soloist. Read Rev. Craig Rennebaum’s book Souls in the hands of a tender God. Learn how Rev. Rennebaum has made such a big difference walking the streets of Seattle for over 25 years, simply doing what he calls “companioning” with those who live on those streets. Share with those who live here by buying and giving basic living supplies baskets. Coming from the streets often doesn’t bring with it towels, toilet paper, soap, blankets, tooth paste or even a broom, let alone a TV or computer. Most of all, be a friend.

For those who live with mental illness are us, our parents, our siblings, our extended family and our children. 1 in 4 families are affected by a loved one who lives with mental illness. Mental illness kills more people than any other one disease. Those who live with mental illness die an average of 25 years sooner than the rest of the population. Suicide kills someone every 15 1/2 minutes in the United States, 2 a day in Oregon, which rates 8 highest in the United States, and the rate is climbing. Every minute of every day, someone attempts suicide. Today since I arrived here at Rain Garden, over 60 people have attempted suicide somewhere in the United States!

Housing will change that. Jobs will change that. Not 40 hours a week, for those jobs are hard to find, and for those who live with mental illness, a “40 hour a week” maybe impossible to keep. Only 3 hours a week can change a life and make recovery possible. Any small job will make someone feel better about themselves. (Jobs such as working at the Warm Line, another program sponsored by Clackamas County Behavioral Health and NAMI.)

Mental Illness killed my precious son Tony. Please join me in this mission to make a difference to do all we can to prevent another’s loved family member from losing the battle with mental illness or having to live on the streets of our communities lost, alone, ashamed, hungry, afraid, cold, wet, and in squalor.

Monday, July 20, 2009

The NAMI Convention 2009

Last week I attended the National NAMI Convention in San Francisco. It was again for me a very empowering experience. The week was full of way too many sessions to be able to attend, picking my favorite was quite hard, but I can only be in one place at one time. I purchased the DVD with all the sessions recorded so that when it arrives I can "attend" the sessions I wanted to but couldn't.
While at the convention I met the founder of the National Bipolar Foundation, Marc Kullman. It was for me a very significant encounter. Marc is a man with compassion and enthusiasm for the cause of finding a cure for Bipolar Disease. He is a tireless worker for the cause in spite of dealing himself with this terrible disease. I hope to work with him on this cause as it is what killed my son and I too want this disease curred, or at least way better controlled. So many people suffer such debilitating effects of Bipolar not to mention the stigma of this disease.
I also got to see my friends Patricia and Gina the author's of the book: Shutup About Your Perfect Kids, They are wonderful and funny sisters on a mission to remove the stigma of not having perfect, honor roll, and gifted children. I highly recommend their book and web site to you.
We also met the people behind the story in the movie "The Soloist". Nathanial came and played his violin and chelo! This was a moving experience to see the movie and meet the people behind the story, Steve the reporter and Nathanial's sister. See the movie and THEN read the book. You'll be disapointed the other way around as the movie had to dramitize the real story somewhat to make a "good" movie. The real story is in the book.
This week will be very busy for me as I have several meetings as President of NAMI-CC. This work keeps me busy, sometimes too busy, but it is such important work that will make a difference in the lives of so many people that I can't not do it.

Monday, June 15, 2009

I'm not sad

A friend wrote that I needed to let go of my sadness over my son's death. I guess I didn't do well explaining that what I'm sharing on my blog is my joy in the discovery that through the difficult times of life comes the miracle of learning to be compassionate and to want to help others on their way. I shared the story of my son's illness to help people understand what mental illness is like from the point of view of the one who suffers. I am working hard to help all those who suffer from the effects of mental illnesses, a disease that effects so many more than just the person who actually has a mental illness. Those who love the sufferer also suffer deeply the effects of mental illness. Please read The Demons on his Shoulder knowing that I have, because how I suffered through my son's short life with Bi-Polar Disorder, become passionate for helping others. I've found Peace in knowing that my son no longer suffers. Although we miss him more than words can express, his family no longer suffers daily with his illness. In his name I'm working with NAMI to help those effected by mental illness through advocacy, education, support and research. Without having been through the all so difficult parts of his life I wouldn't be where I am today. And that, to me, is the Miracle of the Wounder Healer.

The Demons On His Shoulders

He didn’t have a Jiminy Cricket on his shoulder like some of us do; instead it was The Two Demons that sat on his shoulders, one on each side. They took turns tormenting him. Day and Night, High and Low, Up and Down, Good and Bad? He didn’t know what their names were, he just knew that they were there all the time, their voices, first in one ear, then in the other, back and forth they screamed at him.

“I am the whirlwind and you will ride me. Past mountains, over oceans yet untamed we will flash. No comet can touch us. Like Superman we will circle the world a million times in a heartbeat, reversing time itself, untouched, untouchable. Faster! Louder! Dream and we will do. You are a blazing spark of creations essence.”
“You are nothing.”
“Faster, louder, ignore the voices of mere mortals, they know nothing, you are above and beyond. They only mutter in jealous fury. They seek only to destroy your brilliance, to shackle you in their plodding pace.”
You are nothing! He is my brother and delights in your folly. He mocks you. He despises you. I despise you. All whose eyes fall upon you see only a pathetic, empty shell – a passing shadow that will never brush the fringes of their interest. You are the least and most useless of my playthings. Despair is your only companion for none else will have you.”
“Come! Up - Up, and away! I have a plan – dazzling in its breadth, breathtaking in its brilliance. All will marvel. The world is yours. Sleep? Quiet? Peace? They are only illusions. Forget them. Reality is our fiery path and the wind stinging our eyes to tears.”
“You are the smoke of yesterday’s campfire on tomorrow’s wind. Your life is naught. I am despair, your only shepherd. And I devour, morsel by morsel, your very soul. It is my fodder and I will consume it all in my own time.”
“There you are, lagging behind again. The surf is up – tsunami awaits. We will tame its crest.”
“Neither of us cares one whit for you; neither my brother nor I, and no one is as close to you as we are.”
“What’s the matter? Here we go, we will build a nation, invent the warp drive, be the superlative.”
“Grovel in the knowledge of you own limitless insignificance. Wail and beg – it amuses me.”
“Walk on water!”
“Drown in despair!”
Trust no one but me.”
“Trust no one but me!”

They had been there for as long as he could remember, those faceless wordless voices, whispering of despair and goading mercilessly to a kind of mental frenzy. Wordless they were, yet a constant and irrefutable presence – shadows that moved with him like his own, never to be denied.
How could he describe the pain to anyone who did not live it like himself? Were there others? He couldn’t even remember the day when he first realized that everyone didn’t share their souls with shadows that tossed existence back and forth between frenzy and despair. He told his parents, but they couldn’t understand – they simply had no frame of reference.
T hat their love and their concern could not penetrate the stifling mists of his private hell caused him only more anger and pain. He knew they loved him, saw how it hurt them to face the reality that they couldn’t protect him from the turmoil within, and began to let slip the hold on even that relationship.
Friends didn’t stay long in his life. He had a lover once, but that love finally turned in revulsion, fear and rejection. They had a child, but gene sequence was the only bond he shared. Somehow he seemed to sabotage every job he landed – a series of progressively less responsible jobs for progressively less pay.
If it was a disease, he thought, why can’t I take a pill for it? Isn’t there supposed to be a vaccine for everything? The medical establishment simply can’t be trusted, he reasoned. Either they don’t have a clue or they are just out to kiss me off because I don’t have insurance. His parents found him a Doctor and paid for the prescriptions. He wouldn’t give it a chance to work and his parents cried out in anguish when he again refused their help.
Cars, clothes, gadgets, and other things just weren’t important beyond the moment, because things are like relationships and require focus and discipline. You have to sustain interest and care for them. Focus and discipline could never break through.
There were regular times when he knew something like peace for a while, but those moments were cruel reminders – mirage oases in the desert of his disease. During those moments he tasted the love of his family, saw his life in something like “normal” perspective, and had opportunities for introspection about his disorder.
If anyone had asked him how he could let the despair take him when he knew it was only a disease, he might have said, “How can you let the migraine cripple you when you know it’s only a headache? How can you let the cyclone toss your house to the next county when you know it’s only air?”
Over time the torment intensified, mocking his attempts to dig in, to reconnect. Deeper and deeper into his soul it burrowed, and neither a few days of medication nor family concern nor reason could contain its remorseless throb.
Someone suggested cocaine. Perhaps he even knew that Sigmund Freud himself had the demons on his shoulders, and kept them at bay with cocaine. He found a source and in the cocaine, and perhaps in other dark concoctions, found temporary surcease. The crash when the drugs wore off, (all too soon), was unbearable, but the relief was like water to a parched tongue. He just didn’t realize that every crash was a bit worse.
He didn’t realize it until one day when the crash left him paralyzed with the anguish of his demons. They danced on the most tender parts of his soul, gnawing greedily at his very self. It was a pain of the soul as searing as any bodily pain. Talking would be useless. More pain, now and tomorrow and the next day, would be unbearable. Cocaine was a false promise. Medication seemed a farce to him. Somewhere beyond reason, beyond logic, beyond faith came the thought that aspirin relieves pain. Something else to try? A way to find permanent peace?

Over time they had become louder and louder until he could see only one way to silence them.

The demons know neither reason nor logic nor peace.

Do not try to understand them.

…They are gone now….

For my son, Anthony (Tony) Lawton Anderson – November 22, 1972 – November 11, 2001

Love, Daddy

The Wounded Healer

Life is full of wonderful as well as difficult events. As I've lived my life I've discovered that there are many opportunities to walk together along the path of life with others who, although also wounded by the difficulties of their life, sometimes hold my heart, sometimes I hold theirs. My heart is broken, torn and battered, it's full of holes, pieces are torn off and it bleeds. But through all this it has become very tender. Tenderized by it's woundedness. A tenderized heart is a compassionate heart. It tastes the salt of the tears of others. That's the wounded healer...

Sunday, June 14, 2009

What will this come to?

My "Baby" sister has her blog. She says she wants me to call her "Little" not "Baby". I can't tell her on her blog page that "Baby" is a term of enderment, that to me one of the best days of my life was when I held my little baby sister and I want to remember that love I felt and still fell for her. So I guess I have to start my own blog to state my case. I wonder if my brother Matt will too, as she is always giving us both a lot of greif over the "Baby" thing.