How I Spent My Summer Vacations (and developed OCD)

My cousin Johnny died a few days ago. He was 70, and had been struggling with complications of Type 2 diabetes for years. He didn’t die because of that complex disease, though.

His doctor noticed that he looked yellow one day. Specialists discovered that he had cancer of the liver and bile ducts. It was so advanced that they weren’t able to drain the bile ducts; nor could they do surgery or chemo. Johnny signed a DNR, told his family and doctors that he just wanted to be comfortable, and died the next day.

Johnny was my first crush. Even as a little girl, I idolized him. A few years older than me, he was smart and funny and cheerful and outgoing and so handsome. His family lived in Lincoln, Nebraska, where my father had grown up. We visited them for a week every summer. The other week was spent with my mother’s parents on their farm in a small town outside of Sioux Falls, South Dakota.

We never went to scenic or historic places for our summer vacations–certainly not anyplace like Disneyland–and I never thought that was odd. We had fun with our aunts and uncles and grandmas and grandpas and cousins. We watched Grandpa milk the cows and run the tractor in Baltic. Played with Grandma’s barn cats and swung on a rope in the barn, always landing safely in the hay.

In Lincoln, we occasionally visited local attractions during the impossibly hot and humid July and August days in southeastern Nebraska. We addressed colorful postcards to our friends and took them down to a nearby mailbox as the evenings began to cool, occasionally getting a treat at a little corner store. In the evenings, one of my sisters and I played pinochle for hours with the aunt and uncle who had taught us the game. We ate Beer Nuts and Switzer’s red licorice bites as we threw down cards in the gloriously air-conditioned dining room.

Johnny was around until I was about 12. He joined the Air Force and was gone for years. But during those visits when he was there, he was always smiling or laughing, even when I locked myself in the bathroom and he had to come in through the window to rescue me. Or when he danced around Grandma’s tree one 4th of July holding a lit cherry bomb (Grandma was not amused).

On one of those Lincoln trips–I must have been about 9–we went to a medical building at the University of Nebraska. One of the exhibits illustrated the steps of an appendectomy. Though I love watching bad medical dramas now, graphic as they are, it kind of freaked me out to see an open incision.

When we visited Baltic next, I pulled a First-Aid book out of a dusty old bookshelf in the tiny living room of the farmhouse. The book opened to a section about treating knife wounds.

I wrote about the childhood beginnings of my OCD in this blog post. I believe that this lifelong affliction started with an intense awareness of violence that summer with those incidents in Nebraska and South Dakota, disappeared for a while after about three years, and has come and gone in adulthood. 200 milligrams of Zoloft helps, though I still have to check and re-check the stove and the locks at night, and I get overly worried about contaminated food and medicine, along with a few other minor symptoms.

As I grieve for my sweet, funny cousin, I’m taken back to those childhood summer vacations. I miss knowing that Johnny is still in the world. We reconnected as adults; Mom and I visited him in Phoenix once, and he visited us in Minnesota a few times with his sister and her husband in recent years. We’d been talking on the phone about once a month when he made his last visit to the hospital.

Someone said that cousins are our first best friends. I’m so thankful on this almost-Thanksgiving Day that my parents didn’t take us to Disneyland or Mt. Rushmore or anywhere but Nebraska and South Dakota on our summer vacations.

 

 

“Grey’s Anatomy” Fumbles Its Treatment of Mental Illness

Sometime in the last year, I heard that if you had kept up with “Grey’s Anatomy” through all of its umpteen seasons, you had spent 300+ hours of your life watching the show.

I’m afraid I’m guilty here. I watch all of the medical dramas on network TV and keep watching them as they morph into quasi-soap operas. “Grey’s” is the worst offender, but it still does just enough medicine to keep me watching.

I was troubled by one of the story lines this last week. Dr. Alex Karev, temporary Chief of Surgery, had a surprise visit from his mother. We learned in an earlier episode when he visited her that she had schizophrenia. One of the ways she managed it was to maintain a steady routine. She worked as a librarian and lived a simple, predictable life.

Though it wasn’t planned that way, Mrs. Karev ended up meeting Alex at a work party filled with lots of people and activity. She handled it well. Found a quiet place to sit and pulled out her knitting, occasionally conversing pleasantly with people who came by.

Alex, on the other hand, did not handle it well. His wife had given Mrs. Karev a ride to the party. Mrs. Karev explained that she’d gotten to Seattle by taking two buses and a train. She was reading about Lewis and Clark on the trip, and marvelled at how easy her travel was compared to theirs.

Does that sound crazy to you? It doesn’t to me either. But Alex’s wife whipped out her phone when she had a private moment and looked up something related to psychosis.

Alex was sitting with his mother once he’d found her, and she said she smelled burning tennis shoes. Alex apparently thought that that somehow made her psych ward material and got pretty panicky.

Turned out that someone had put egg rolls in the oven in a pan that wasn’t oven-safe, and it had started a fire. Alex was so relieved that there was actually a fire, and that his mother wasn’t having a psychotic break.

Several people commented on my most recent post about whether you should reveal your mental illness to people. One said that once someone knows you have a mental illness, he or she will always judge your actions and your words through that lens. No matter how well you’ve managed to control your illness, many things you say and do are suspect.

As I’ve said, my co-workers were exceptionally kind and understanding when I returned from my hospital stay because of a psychotic episode I’d experienced. But I don’t blame them if they were watching me a bit closely. I asked one how the weather was going to be for an upcoming trip. About five minutes after we’d hung up, he called me back, sounding a little breathless.

“Why did you ask about the weather?” he said. I replied that I was just curious about how his drive would be. He seemed relieved that I wasn’t still thinking that I could cause a snowstorm.

Psychosis sounds way worse than depression or anxiety because the word has been hijacked. It’s used to describe people who are violent or otherwise behaving in a frightening way. In reality, it’s a medical diagnosis, brain chemistry gone wrong.

So I get it, Dr. Karev, but I wish your scriptwriters hadn’t chosen to reinforce an unfortunate stereotype on a popular TV show — especially one where the medical professionals should know have known better. Those of us who disclose our history of mental illness risk getting the same type of reaction, whether it’s obvious or not. Some of us are old enough and have been through enough that we just don’t care anymore.

The stigma will never improve until we start speaking up.

 

You Have the Right to Remain Silent: Should You Tell People About Your Mental Illness?

I write about computer applications for consumers and small businesspeople, mostly accounting and tax. As a part of my job, I used to attend big technology conventions in various cities.

At one show in Las Vegas, I had just left the bathroom and was walking down one of the crowded aisles. I felt something brushing my leg and looked down to see what it was. It was my half-slip, which was hugging my ankles. I must not have pulled it up far enough in the bathroom.

I considered my options quickly, and decided to duck into the Toshiba booth. I stood behind two men who were talking, said “Excuse me,” and quickly hiked my slip up. They were too startled to be amused.

That happened in the 80s, when women wore slips more than they do now. So someone might have seen my outfit and assumed I was wearing a slip. I didn’t have to tell them. But I certainly showed them, albeit accidentally.

I was thinking about that incident when a few individuals revealed their own struggles with mental illness in response to my blog posts. I appreciated their honesty. There are so many people who still don’t have a good understanding of mental illness, or who think it’s simply a character flaw.

It doesn’t help that every time there’s a mass shooting in the United States, it’s assumed that the shooter was mentally ill. That kind of unwarranted–and sometimes untrue–publicity makes the public fear–and misunderstand–mental illness even more.

If only they’d sought help, some people say. If you’ve ever been seen by a mental health professional to try and get symptoms diagnosed and treated, you know that’s not a simple solution. Both processes, the diagnosis and the treatment, are far from exact sciences. We’re lucky if our brains are ever able to return to their “normal” states.

So it’s little wonder that mentally ill individuals are hesitant to disclose their illnesses.

When I was in a psychiatric hospital in 1987, my doctor gave me a warning one day. “Don’t talk to your friends about this,” he said. “It will scare them.”

How could I keep this from my closest friends? I was used to telling them so much about my life (too much, sometimes), and I had been absent from work for five weeks. I visited the offices of my most trusted confidantes and editors my first day back, shut their doors, and told them I’d been diagnosed paranoid schizophrenic.

To their credit, I think most of them thought that was ridiculous, which it was. I was 30 — too old for the onset of a chronic mental illness.

Also to their credit, they took it in stride. One called me at 10 that night and asked why I wasn’t at his Oscar party.  They’re still good long-distance friends.

Choosing whether to disclose a mental illness  is such an individual, complicated decision. You certainly aren’t obligated to tell a potential employer. It was easy in my case. I’d started freelancing, and my new editors didn’t have to worry about onsite personnel matters with me. My meds at the time were good enough that I was able to work just fine. Even kept working through a psychotic episode in 1999 because I didn’t know I was sick. I still work today with no interference from my illness.

That’s one of the reasons I wrote Dopamine Diary and put my real name on it. Above all, I wanted other people struggling with psychiatric disorders to see that recovery is possible. I also wanted people who hadn’t been touched by it to see the main character in a sympathetic light (some of the time, anyway).

I don’t know for a fact what friends and past employers truly think about my after-the-fact disclosure. I do know that I’ve never lost a friend or an assignment over it. I believe strongly in the right to privacy where employers and acquaintances are concerned, but I also think it doesn’t hurt for your closest friends to know.

Tell the truth, but tell it slant, Emily Dickinson wrote. I wouldn’t have been quite so candid with my friends after my hospital stint if I had it to do over.  They didn’t react as kindly as they did because they’re my friends. They’re my friends because that’s the kind of empathy and understanding they display.

 

Psychotic Triggers: The Power of One Word

I moved to North Carolina in February of 1983. Having lived all my 23 years in the Midwest, its early springtime was so welcome.

Several years ago, I was looking through an old pocket calendar from that year. I wasn’t keeping a journal in those days (which I regret), but I would scribble words and phrases in it to remind me of things I needed to do.

One entry that spring read simply, “Light.” It brought back a rush of memories from my first days in the South.

Our apartment building in Greensboro was one of many that surrounded a small pond. Next to each door was an outside light that came on as it got dark. I remember how peaceful my surroundings looked at night with the soft white lights casting a glow across the water.

I remembered that feeling the lights gave me when I came across that word in my old calendar. The notation was simply a reminder to tell the management company that our light didn’t work and we needed a new one, but it was a vivid reminder of my move to a new state and a new job and new friends. It made me happy to remember it.

Words, aromas, sounds — they can all snap us back to a different place and time, sometimes good and sometimes not. During my first psychotic episode, the wrong word–the thought of what that word meant–could send me into an unpleasant tailspin.

I really liked my third roommate in the psychiatric hospital. She had taken me under her wing when I was transferred from the “chronic” ward (a wing of the facility where most residents stayed in their rooms, and the few who ventured out were quite obviously, quite severely mentally ill — even more so than me).

One day when we were sitting on our beds talking, my roommate showed me a picture of a baby in a coffin surrounded by lots of white satin blankets. It was Mary’s niece who had died of SIDS, which was why Mary was in the hospital. It had happened 18 months earlier, but it was still causing her great anxiety and depression.

Mary got up to leave, and I looked down at my neatly-made bed. That’s funny, I thought to myself. I don’t remember leaving a clothes hanger there this morning.

Suddenly, my chest started burning and I couldn’t breathe very well because of the word.

“Hanger,” I thought. “Hang-her. Hang ME.” I thought Mary blamed me for the death of her niece and wanted me to die, too. I got up quickly and went into our bathroom, but that only made it worse. Mary had left our shower curtain open, and her purple razor was sitting on a little shelf. I thought it looked like a death chamber, inviting me in.

Somebody once said that there’s a kernel of truth in every psychotic episode. And in fact, I did believe that two of my close friends wished me harm before I got sick. But once the dopamine in my brain went out of bounds, it’s impossible to know for sure why my thoughts went the way they did.

Words had great power over me when I was psychotic. I thought everyone knew things about me and believed I was responsible for very bad things happening. I thought they conveyed this information to me through hidden meanings in their language.

Once in a while, my brain will “catch” on a sentence that someone says, and it reminds me of those two periods in my life when I was mentally ill and afraid of words.

My last psychotic episode ended 20 years ago. There but for the grace of Abilify…

For those of you who don’t know, I wrote a book about my experiences with mental illness. You can get more more information at dopaminediary.net.

 

Childhood OCD, Adult Mental Illness, and AM-Radio

I listen to AM talk radio all day and all night — WCCO-AM in Minneapolis, Minnesota. I don’t hear much at night, but a few minutes is enough to put me to sleep.

WCCO-AM was my nighttime companion when my first sign of mental illness occurred. I was nine years old. The Minneapolis Star had just published excerpts of Truman Capote’s “In Cold Blood.” Unfortunately, I read the section where the family was discovered dead.

From that night on, and for the next three years, I believe I started showing symptoms of OCD. I was obsessed with the thought that someone was going to break into our house and kill my family. The fear was with me every night, all night, whenever I was awake, which was frequently.

My mother did the best she knew how to do. She let me sleep with a fan blowing air on me and an old radio on next to me bed. It was about the size of a breadbox, painted a particularly ugly shade of yellow years before.

But I could tune it in to WCCO and hear the soothing voice of Franklin Hobbs, who did an overnight show called “Hobbs’ House.” He played music from the 40s and 50s. And he talked between songs in that comforting voice. Nothing really made me feel safe–the fear was there all the time–but Hobbs did help me get through those nights in the three years my obsessive thinking lasted.

I was always so grateful when 5:00 a.m. rolled around, and Hobbs handed the airwaves over to the wacky, legendary team of Charlie Boone and Roger Erickson. The night was over, and my family and I were alive.

Boone and Erickson occasionally had famous guests on. I’d heard that Morey Amsterdam was going to be on the next week, so I sent him a joke to read. A mouse was dancing on the lid of a peanut butter jar when one of his mouse friends asked what he was doing. “Well, it says, Twist to Open.”

I thought it was hilarious, but I never knew whether Morey shared my mirth on the air. I slept through his segment.

My OCD symptoms suddenly stopped when we moved to Central Illinois in 1968. Just gone. Poof. Different bedroom, maybe. A geographical cure. They resurfaced many years later when I was in my 20s and drinking too much. I felt trapped in my bedroom, so I slept on the floor in the living room a lot, sometimes right against the apartment door.

Again, a move to a new apartment made my symptoms go away. A few years later, I had my first psychotic episode

I read an article recently about how childhood OCD can be a precursor to mental illness later in life. Don’t know if that’s true, but I’ve experienced both.

I found an old recording of Franklin Hobbs a few years ago. His voice was nothing like I’d remembered. It was kind of tinny and fast. He was talking about sports, so maybe that accounted for the difference.I’ll always remember his speech the way it was in the early 1960s, when it gave me brief reprieves from night terrors.

I’ve lived in several places since, and never picked up that overnight radio habit again until I moved back to Minnesota 15 years ago. Now I listen to an overnight host whose politics differ from mine, and who takes a lot of calls from Midwestern insomniacs — no “music of your life,”and not a particularly soothing voice.

But it’s still comforting in a way, though I’m not afraid when I go to sleep these days. It reminds me of that long-ago voice that got me through those three years of fear.

Know When to Fire ’em: Should You Change Psychiatrists?

“You are a loner!”

My psychiatrist practically shouted that sentence. It was my second week in a private psychiatric hospital in Greensboro, NC, in 1987. I admitted myself on the recommendation of Dr. Garrett, after I’d called him to say I thought I was causing the snowstorms.

“You are not causing the snowstorms,” he’d said on the phone that night. “You have a chemical imbalance in your brain.”

Do psychiatrists actually think that means anything to someone experiencing her first psychotic episode? (“Oh, gee, I guess that must be it. Thanks for your time, doc.”)

Dr. Garrett went on to make three serious mistakes and several lesser ones. Besides the inaccurate assessment that I was a loner (would YOU try to be buddies with people you thought wanted you to kill yourself?), he:

  • Ordered the dexamethasone suppression test for me, which had been discarded by most shrinks as being ineffective.
  • Started me on Stelazine, which had absolutely intolerable side effects, rather than putting me on one of the milder antipsychotics that had recently been introduced (Trilafon was available in 1987).
  • Diagnosed me as paranoid schizophrenic after observing me for only a few days.

Wrong, wrong, and wrong.

These events started a spiral that led me to go off my meds, quit a job I loved, move 1200 miles away, and pick up the psychotic episode where I’d left off. It would be months before a new doctor put me on Trilafon, which quieted my symptoms with minimal side effects.

I should not have gone off my meds. I should have told Dr. Garrett I couldn’t live like that, and asked for a med adjustment. He had increased my dose from 10 to 40 milligrams (the max dose) in about three weeks, rather than giving a lower dose the time it needed to work.

He asked me once if I thought he, too, was trying to convey dark messages to me through hidden meanings in language. Oddly, I didn’t, and I told him that.

“Well, maybe I’m the voice of health,” he replied, beaming.

If you’re seeing a psychiatrist or getting psych meds from your family physician, is he or she the “voice of health” to you? In retrospect, I should have gotten a second opinion from a different doctor after my horrific experience in the hospital.

I’m not advocating doctor-shopping. Psychiatry is so imprecise, and mental illness is so hard to diagnose and treat. I honestly believe most professionals are doing their level best to treats their clients. And they do know many things that we don’t.

But please don’t settle where your emotional well-being is concerned. Aim for the best mental health you can achieve. Psych meds have improved so much since the 80’s, and sometimes the docs need to get creative if you’re not responding to standard solutions.

Or maybe someone else needs to evaluate your symptoms, see you and your history through fresh eyes. You wouldn’t keep going to the same mechanic if your vehicle wasn’t running smoothly when you picked it up. Give your doc a chance to make adjustments that could help, but learn from the mistake I made 30 years ago. Know when you need to move on.