In 1972, my mom’s stepcousin “Crazy Mary” drove up from Pasadena to stay with us in Santa Barbara for a week. I was nine. She called me into her room on that first night to casually inform me that people, probably the FBI, were putting something in her hairspray that made her hair fall out. She enthusiastically pulled back areas of red curls to show me the bald spots. Her hair looked fine to me but I didn’t say anything. Mom said she was a schizophrenic and to just ignore some of the funny stuff she said and did. I was horrified.
To this day the oddities of that visit haunt me. When I come across someone whose reality and behavior are out of sync with everyone else around them, it creates an old and familiar anxiety. So it is with some irony that my Santa Barbara-based marketing company not only landed an account with the Mental Health Association (MHA) in Santa Barbara but that I would come face to face with some of my biggest fears there.
About a month ago, I asked if it would be possible to sit in on what I had heard was a particularly interesting and well-attended support group at MHA for family members caring for someone with a severe mental illness.
I was told that family members in this particular support group tend to come more frequently when their loved ones are in crisis and that I should be prepared for what I might hear. I was urged by the staff to remember that mental illness is highly treatable but that the path to getting the proper treatment can take time and can be particularly difficult. My expectation was that I would get some helpful insights into what goes on at the agency so I would be better suited to discuss their impact in the community. I had absolutely no idea of the unsettling and foreign world I was about to enter.
First, my attendance in the group has to be voted on anonymously. Each of the 20 or so members is handed a piece of paper on which they are to write “yes” or “no” with respect to my remaining for the group. One “no” vote means I’m out. The awkwardness of these moments of voting cannot be overstated. I feel (probably imagine) enormous indecision in the room as members tap their pens, look up…over at me…shrug at one another. I, on the other hand, don’t know where to look and, quite frankly, want to flee from the room. When the paper slips are finally collected and the tally comes in unanimously in my favor I am oddly flattered and also slightly panicked. For the next two and a half hours I sit silently trying to compose myself as this group begins to speak a common language of despair, fear, frustration, and dangling hope. I have a front row seat to each of their personal daily struggles as well as their intense shared emotions in dealing with their mentally ill loved one. I’m overwhelmed with the realization that these things are happening right here in Santa Barbara, among us.
Their stories reverberate in my head:
Nineteen-year-old Eric, who suffers from severe depression, is doing better this week and his wrists are healing nicely. He overdosed a month ago and then sliced his arms with broken glass. His father kicked in the bathroom door to find him unconscious and face down in the bathtub. It was his fourth suicide attempt in as many months.
Maddie only communicates with her family by passing notes under her bedroom door. She spends most of the time sleeping. Her father admits, with obvious guilt, that her depressive phase and heavy sedation is a relief from the unpredictability of her mania. She doesn’t eat.
Two young adult siblings are absolutely inconsolable and begging for any kind of help from the group. Their sweet, mild-mannered brother is refusing treatment and has become psychotic and delusional. Over the past few months he seeks any opportunity to kill himself and has made numerous attempts. They’ve removed all pills, knives, and sharp objects from the house. They trade off evenings sleeping in his room; medication bottles line the bookcase that was once home to his football trophies.
Margo, 25 and living with untreated schizophrenia, believes ice cream is evil and it is her mission to rid the world of it. She walks up to people in public and demands that they throw it away. She crosses the street when she has to pass a store that sells ice cream. She is now beginning to think frozen yogurt isn’t so great either.
As he speaks, her father slowly raises his head, looks at all of us and smiles. He becomes transformed as he starts to describe Margo’s paintings—long sunflowers that bend in the summer breeze; vibrant colors used in land and seascapes. His pride is evident as he describes her ability to support herself through her talent. She’s has had five gallery showings in the past two years and is now being represented by a national art dealer.
Don is a middle-aged mortgage loan officer who became severely depressed and suicidal last year after losing his job. He now spends his days drinking, watching TV and internet pornography. He refuses to leave the house or speak to his wife.
My head is spinning with clinical terms—obsessive-compulsive, bipolar, schizophrenic, schizoaffective severe depression, manic depression, Anorexia, borderline personality, Asperger’s, alcoholic, addict, ADD, ADHD, PTSD, combinations of all of the above … and medication after medication; taking the latest this for that, that for this; interactions, reactions—medication that will counter the side-effects of primary medication, a third medication to deal with the effects of the second, and so on. Family members say some remarkably honest and shocking things as they take turns addressing the group:
“I don’t know how to help him.”
“We’ve gone through the entire phone book trying to get help.”
”Let him get arrested then he’ll be safe for a day or two and it’ll give you a nice little break”
“She is more than her illness. She brings joy to my life every day.”
“Never answer the phone after 10 p.m.”
“I’m starting to think it would just be easier on all of us if we just et him do it …”
“Your psychiatrist actually answered the phone?”
“Check all her cell phone calls and texts every night after she’s passed out.”
“Just put the medication in his booze.”
“Meds are making everything worse.”
“This new medication is the answer to our prayers …”
Those who have been in the group longest seem to know the ropes and offer advice and guidance to the newer members. They offer wisdom, practical ideas for getting through the next crisis, and, most importantly, some hope.
I’m stunned at the raw emotion in room. People are sobbing, venting their anger, laughing; they get up and pace. Some don’t say a word. I’m relieved to note that I seem to have become completely invisible to all of them. Michaelo, the moderator and counselor, keeps smiling and nodding with understanding throughout. “You’re doing the right thing.” “Don’t give up but keep your boundaries clear.” “Just take it day by day.” They feed off his every word.
With an equal amount and love and desperation, these family members are all struggling to keep their loved one from acting out in various unpredictable ways, to keep them safe and alive. They also want to ensure them as much happiness, fulfillment, community acceptance as possible. Many group members point out that the mental illness is just one part of the whole person; it is a challenge but it does not define them. Despite all they have been through, they have not given up on a better life for their loved one. It dawns on me that not only do they come here to receive help but they are also here to provide it. As the discussions wind down, they don’t seem to want to leave the room and cling to one another as if the group is somehow a respite and a refuge—away from the doctors, insurance companies, police, social workers, psychiatrists, county bureaucrats, and turmoil at home. They promise one another that they’ll be back the next week, offering final encouraging words as they pull apart and slowly begin to leave the room.
As for me, I now have a new understanding of the complex world of mental illness and the value of shared support and compassion for those dealing with it. I also have new, vivid images to join my memory of “Crazy Mary.” I see the faces of the people in the room, replay each of their stories, and wonder, what was it like for them today?
Author’s note: Names and certain identifying details in this account have been changed to protect the confidentiality and privacy of the MHA family group. For the same reason, events described by members of the group have in a couple of cases been conflated. The meeting is otherwise reported accurately. The group members participated in this editing process.