It's Not for Sissies
By Marilyn Karr (8/26/12)
Hear an audio recording of this Sunday's reflection:
Read today's message:
Awhile ago, Frank Iuro got up and spoke about being gay, something none of us there will probably ever forget. I told him later that someone needed to do the same thing for mental illness. And I realized that I was probably the one who would have to do it.
I can’t give you a treatise on mental illness. Mostly, I’m just telling you a story — a story of our family from a mother’s perspective.
I’m a daughter of Swedish immigrants who were very clear about telling me that life was difficult. They had had some hefty hardships to overcome and, in contrast, my life was easy and I was very luck. I understood this. I had a roof over my head, never went hungry, lived in a free country. I was lucky!
Then I married Bill, a good man, a good marriage, four healthy kids. Still a roof over our heads, food to eat. Still lucky.
Marci is our first born. She sang on pitch at a year old, picked out melodies on the piano at 4 years, found the chords to go with them at 5 years, was composing her own at 6 years. She was a little moody and sort of sensitive, easily distressed.
Steven was born a year and a half later. Totally different. He almost ran before he walked. He was nothing but movement, a born athlete like his father. And so very good-natured. A happy, very lovable baby.
Ron was born 2½ years later. He was simply curious. About light sockets — things like that! By the time he was 2, we knew he would be an engineer when he grew up. I always thought he was born knowing calculus, but I guess he taught it to himself later when he needed differential equations for some problem he was working on. But Ron had trouble understanding social cues. I guess you could say he was a geek.
Chris was born 4½ years after Ron, our after-thought. He was different. No clear talent stood out. I called him our pudding mix. He had a little of all of it — nothing extreme — and everyone loved him.
They grew up. Marci, who simply wanted to make her way in the world as a songwriter, picked up her stereo and a rocking chair and boarded the Green Tortoise — a kind of hippie bus — and headed for San Francisco. She was 21, no job skills but waitressing, and she was anorexic.
I was terrified.
Somehow she survived, but it was a rocky existence. In 1986 she married Thor, who wanted to be an artist. So Thor painted, and Marci wrote two musicals, both of which were put on stage and got rave reviews. They lived on a shoestring from an inheritance Thor had. Writing music really doesn’t pay well, if it pays at all. In 1992 their daughter Maddie was born.
Steven never quite figured out what he wanted to be when he grew up. Bill had been a junior high science teacher, had completely burned out, and then supported his family by opening his own paint contracting business. Like many teachers, he had made summer money painting houses, so he already knew that job.
Steve began working with Bill. He’d come over in the morning, and he and Bill would happily shoot golf balls into our woods before work, seeing who could hit the farthest. Then off they’d go.
He married Judy in 1988 and their son, Jeff, was born in 1990. We were there for the birth, and I thought Steve’s buttons were going to really pop off his chest. He was one proud father!
Ron graduated from North Kitsap in 1982, having first computerized the school library. He had taught himself computer programming. After college he was whisked off to Silicon Valley, where his skills were in high demand and being a “geek” was an enormous asset.
Chris couldn’t seem to find a goal. He managed to graduate from high school. He just seemed a little flaky. He was bright enough — just didn’t seem to know what to do with himself. He’d live here and there with friends, wherever. We were concerned, but didn’t know what to do about it. Occasionally he’d work with Bill and Steve.
And then the morning of June 2, 1991, I was in church playing the organ when the door of the Robe Room suddenly opened behind me. It was Bill.
“You’ve got to come,” he told me. “Steve has fallen off a roof.”
It turned out to be a 12-foot ladder. He had been helping a friend paint his house and had fallen off the top onto a concrete patio, hitting his head.
Steve had been helicoptered to Haborview, and he was in surgery when we got there. It lasted eight hours. Most of our extended family was there by then, and we bucked ourselves up thinking of Steve’s energy and his ability to survive.
Finally the surgeon came out and said that if Steven lived, he wouldn’t be the person we knew, and he would lose coordination.
The world as I knew it fell completely apart. I went home with my mother, took a sleeping pill, woke up at 3:00 in the morning, and knew that an atom bomb had just gone off over my head. Steve was brain-dead the next morning.
And I was no longer a lucky person.
I had been really worried about Steve. He was having troubles, his marriage was rocky, he was having anger management problems, and I had been scared for him.
I asked his friends, who were all at the hospital, what they liked about Steve.
“Oh,” they said. “He was everyone’s best friend. Anything he owned was yours, too.”
I didn’t know that about Steve.
And, if you were at his memorial service, it was an eye-opener, too. He was a funny, funny guy!
I had been too worried about his warts to see all this. He was dead, and I had missed who he was!
And I made a vow. I would never again worry so much about my kids’ warts that I would miss what was wonderful about them. I would completely love them exactly as they were.
It turned out to be a lucky vow.
Chris continued working with Bill sporadically. He got married in 1993, was separated in 1995, and Bill was complaining about Chris not showing up for work or showing up late and not working well at all.
In December, Chris was living in Seattle with some friends, and he called me and told me he was an alcoholic and he was going through a program at Group Health and going to AA. We didn’t see much of him for awhile.
Then one day in February of 1996, he was working with Bill and they came home for lunch, and I looked at Chris and suddenly knew in my whole being that he was suicidal. I don’t know how I knew that, but I did.
I called Marci, who said, “I lost one brother. I’m not going to lose another.”
It was the call to action! She called around to his friends. They said he was drinking again and was a mess, was totally unreliable, no one could stand to be around him.
One friend and Marci put together an intervention with a trained counselor. His friends managed to get him there, and I had set it up with Group Health. He was really angry, but Marci begged, and he really loved Marci, so he reluctantly let us take him to Eastside Hospital, where a social worker took him. They were gone for a long time.
Finally she came out. “Chris may be an alcoholic,” she said, “but I think he may have a mood disorder, so I’m giving him the choice between rehab and the psychiatric ward.”
Bless his bones and his good instinct, Chris chose the psychiatric ward. He was there a week, diagnosed with depression, given Paxil and an appointment with a psychiatrist over here.
He came back cheerfully — was “couching around” with whatever friend would keep him — when I got a call from the psychiatric nurse at Group Health.
“Find Chris and tell him not to take his meds,” she said.
The next thing I remember is Chris calling us from the hospital. Two nurses had picked him up and driven him to Harrison. He was bipolar and the Paxil, an anti-depressant, had driven him way over the edge into a full-bore mania.
He was there a week, getting different meds. He hadn’t been completely honest about his symptoms at the first hospital because he was afraid they would lock him up and throw away the key.
He told Marci his symptoms.
“Oh,” she said. “I do all that, too.”
Marci had been having enormous problems also, with debilitating depressions that left her unable to move and would keep her bedridden for days. No one understood it.
So in one week, I learned I was the mother of two mentally ill kids! I was in shock. One dead kid, two mentally ill. Not very lucky.
I remember thinking that at least they could pop a pill for bipolar and everything would be fine. The most naïve thought I’ve ever had in my life!
Chris was terrifying. Yes, he admitted he was suicidal. And he hated the meds. They made him feel terrible. He came home one day with his laundry, and I asked him if he’d like to stay for a few days. He’s been living with us ever since.
The first 2½ years were so scary because he hated his meds so much he quit taking them, and I knew how suicidal he was. Mostly he sat in a chair in our front room, almost catatonic. If he went out, I wondered if I’d ever see him again. It was awful.
Then one late April night he was staying with a friend when I got a call at 4:00 in the morning from Marci. Chris had called her. He was sitting out in the woods, behind his friend’s house. He’d gone outside because “a truck kept trying to crash into the room” he’d been sleeping in. he was watching the wild animals in the woods.
Marci convinced him he needed to go to the hospital, and he finally agreed that I could pick him up and take him, and I did.
He hadn’t slept for three days and could barely talk, but he managed to tell me, haltingly, that he’d been reading Kurt Vonnegut and he learned something really important.
“I am not my brain. My core is good.”
“Yes, Chris, it is,” I softly replied.
He was at Harrison a week, spent his 30th birthday there. New meds had come on the market and they were much better. From then on he took his meds.
Chris is actually schizo-affective, a mood disorder with a little schizophrenia tucked in. it’s one of the rarest and hardest to treat of mental illnesses.
He’s been on disability almost since the beginning. His doctor got it for him on the first try, which is really rare. And scary. It was hard to understand. I remember the nurse telling me that Chris was very, very ill.
Marci is flat-out Bipolar I, the most difficult, characterized by extreme shifts of moods — either debilitatingly depressed, or getting so “high” that you can become psychotic. She’s so enormously responsible. When she realized she had Chris’s symptoms, she immediately called psychiatrists, found one she liked, and she’s had him ever since. She works hard at it. It’s difficult. The meds are hard. As I learned later, the meds are a shotgun approach, and they hit more than the target, causing some pretty uncomfortable side-effects.
In 2003, Marci’s husband decided he didn’t want to be married any longer and, because she had no money, she was sort of turned out into the streets of San Francisco. She couldn’t move up here without losing her daughter. She managed to find a job and get a small apartment, but it was very frightening. Fortunately Ron lived nearby, and he was able to give her financial help.
Being mentally ill is difficult. I’ve watched it be difficult. I asked Marci what she would like to tell you. She said that, first of all, remember that there’s no such thing as “one size fits all.” Everyone is different and has to be adapted to differently. The meds work for some people, and the same meds not at all for others. It takes time to find the right fit, and even then it can change. The uncomfortable side-effects are one of the main reasons so many mentally ill persons refuse to take them.
Secondly, Marci says, it’s almost impossible to plan your life because you change so much. What you can do one day may not be manageable another day.
Marci’s still struggling to find how she can make her own way, and it’s hard! Right now, her main med — with which she was doing very well — failed to hold down her “high,” and she had to be on too high a dosage, which was unsafe. All that was left was to try ECT — electro-convulsive therapy. She’s in the middle of this now. Scary!
Other things I know are that mentally ill people are no more violent than the general population. My kids are gentle people. I know that jails have too high a percentage of mentally ill people, and even more so with the homeless population.
I know that a lot of alcohol and drug problems are really from people trying to self-medicate, which was true of Chris. He isn’t an alcoholic.
I know that some people are able to do fine with the meds and have good jobs, and I know that they are a minority.
I know that a good psychiatrist is a crucial part of returning to stability. We’ve been lucky to have had really good doctors.
Often bipolar people don’t want to take meds because they leave them a little flat and they miss the excitement of their highs. There’s an in-between spot called hypo-mania which can be fun and exciting. But it eventually leads to a full mania — not a good idea.
I know that stress makes things harder for most of them. I also know that most of them have to keep their world small. Crowds are uncomfortable, too much going on.
And I know that the stigma of being mentally ill makes things much worse. There’s a lot more sympathy for someone with a cast on their leg, or someone suffering from cancer. These things show.
Mental illness usually doesn’t.
Chris uses a lot of energy to appear normal. If you met him, you would not know there was anything the matter. So how does anyone explain why he’s not working or why he can’t do something? If he tells someone why, he can be looked at in a dubious way or even feared.
So when my kids were, and even still are, going through their rough times, I didn’t ask for prayers in church during our prayer time. It would have been an invasion of their privacy, which I’m doing big-time now, but with their permission.
I’m personally sich and tired of the stigma, and not telling why Chris lives with us or why he can’t work. And I honestly don’t know why he can’t work. I just know he can’t, at least not steadily. Actually he occasionally does a small paint job for someone or house sits. An interesting conversation with him awhile ago. He said there’s no way for me to understand how his brain feels. And he’s right!
Marci, who doesn’t deal well with the low-paying clerical work that’s mostly available to her, has just received a certificate in working as a para-educator with special needs children. She doesn’t have a job yet. She also has been giving piano lessons, particularly enjoying teaching autistic children. She’s really good with them, and she’s so creative. How would you like to tell your students’ parents that you have to take three weeks off to have ECT? She just told them she had to take time off for health reasons.
Another thing I know is that there are others right in this church with the same kind of issues, probably more of you than I know of. And the stigma is stopping you from telling us what’s happening to you or your family members.
And I expect that stigma also stops people from getting help or even accepting the fact that they need help.
As I was pondering doing this sermon, I began to wonder how I’ve gotten through all this, still pretty intact.
And then I thought about my mother. The Christmas after Steve died, I was standing in Bartell’s Drugstore with my mother, and we were talking about Christmas, and I thought about there being no Steven, and a tear trickled down my cheek.
My mother saw it and said, “Well I always say, Count your blessings.”
I understood, because it was one of her mottos. But it wasn’t what I needed to hear.
At my mother’s memorial service, I talked about her “counting her blessings,” and explained that sometimes it was really irritating, but I also understood that it had helped her enormously through the hardships of her life.
So as I wondered how I managed, I realized with a certain amount of horror, that even though I don’t run around saying “count your blessings,” I do it. I say “The good news is….”
There is so much good news through all of this. I adore my kids. I’m very proud of how they’ve handled their problem. They’re great people. I am so grateful that they’re so responsible for their illness and that they have great doctors and that we live in a time where meds, if imperfect, are available and that they’re not thrown into some horrible bedlam kind of place. I’m grateful that we now know that mental illness is caused by chemical imbalances in the brain, and it’s no longer the mother’s fault!
I’m so grateful for our family and that we truly love, care about, and enjoy each other. I’m so grateful that our son Ron has done so well with his computer ability, that he can be — and is — so very generous about helping Marci financially. I’m grateful they live close to each other. I’m grateful for the wonderful support I’ve had from my kids through Bill’s accident and death two yeasrs ago. Even though I’m sorry for Chris that he has to live with me, it’s been extremely helpful to me to have him there.
I know that for what we’ve been through, we’ve all done really well. And I know that a lot of our doing well is because I learned to totally accept my kids for who they are. And I know that Steven’s death made us all much closer, because we all understand we can lose each other, that our brothers or sister, that my kids can die. We know this deep inside our bodies. And we don’t want it to happen again. Somewhere in my heart, I see Steven sitting on some celestial cloud with that smug look on his face, because he knows how much he helped.
And now, because I seem to be a blessing-counter like my mother, and because I played the old gospel hymn “Count Your Blessings” while people sang it at her memorial service, I’m going to play it in honor of my mother and her courage in adversity and for the courage of all of us in adversity. You get to sing it. Enjoy an old gospel hymn!