Take Five

LePageMy wife, Governor Paul Lepage, Bill Nemitz, a charity auction and the in-patient psychiatric unit at Maine Medical Center.

How did these random things become connected last week, causing a bit of a stir on my Facebook page last night?

Let’s start at the top.

Last week, just days before the election, Governor Paul LePage joked that Portland Press Herald columnist Bill Nemitz should be placed on a “suicide watch,” speculating that he was going to win his re-election bid and his nemesis might jump off the Penobscot Narrows Bridge as a result.

Boom! Instant controversy. Once again, the governor found himself in familiar territory with his foot in his mouth.

The governor’s critics (Democrats) went wild, talking about how insensitive the governor is to issues regarding mental illness.

Reportedly, some people who have lost loved ones to suicide were also  angry and upset about the remarks.

Other folks (Republicans) said the governor was joking and the comment was no big deal, pointing out that many in society make lighthearted jokes on similar topics.

Stop and think if you have ever said “I’m going crazy.” “That is a crazy idea.” “That guy is a nut job.” Have you ever laughed when hearing a joke about hearing voices? Late night talk show hosts had plenty of fodder more than a decade ago when actress Margot Kidder was found partially clothed, hiding in the bushes of an LA suburb.

The subject of mental illness makes us nervous. We laugh about it as a relief valve for our own anxiety and fear. But can you take it too far?

Who’s saying what

My wife  has multiple sclerosis. It is a progressive illness with no cure. She often makes jokes about her illness, speculating about when she will need a wheelchair and telling me we will need to completely renovate our home to accommodate her decreasing mobility. She laughs about these very real topics, appearing on the surface light-hearted.

Her jokes about MS really bother me. They trigger a rush of feelings and incredible anxiety. I know that her jokes are just part of her coping methods, but still I cringe when she talks about putting “bling” on her cane.

When Laura jokes about her MS, I try to give her a pass because she has MS, not me. It is her coping strategy.

It’s sort of like the “N” word. An African-American man can use that word in public without recrimination and make jokes about its connotation and meaning.

If I did the same thing, I could possibly lose my job, certainly many friends.

Society draws a line. If you got it, you can talk about it. Otherwise, keep your trap shut.

Unless it’s Hollywood or the media , and then all bets are off, especially when it comes to mental illness.

In the days following the 2007 massacre at Virginia Tech, “Nightly newscasts reported “no known motive” and focused on the gunman’s anger, sense of isolation, and preoccupation with violent revenge. No one who read or saw the coverage would learn what a psychotic break looks like, nor that the vast majority of people with mental disorders are not violent. This kind of contextual information is conspicuously missing from major newspapers and TV,” wrote Richard Friedman in “Media and Madness,” an article published in the June 23, 2008 issue of The American Prospect.

Friedman goes on to explain that “Hollywood has benefited from a long-standing and lurid fascination with psychiatric illness,” referencing movies such as Psycho, The Silence of the Lambs, One Flew Over the Cuckoo’s Nest and Fatal Attraction.

According to Friedman, “exaggerated characters like these may help make “average” people feel safer by displacing the threat of violence to a well-defined group.”

Since the 2011 Tucson shootings, I have been an out-of-the-closet consumer of mental health services. I have testified before the legislature, published an op-ed in the Portland Press Herald, spoken at community forums.

My mission is to show, in a tangible way, that mental illness is generally not scary and more often than not impacts everyday people: your friends, your co-workers, your neighbors and even your social media contacts.

My life-long struggle with mental illness is not particularly funny, but I do make jokes about it. Have you ever tried to eat a chicken cutlet with a spork? (They don’t give you silverware on the psychiatric unit. )

Did you know that nine out of 10 psychiatric units have aquariums? Fish, apparently, relieve anxiety and stress.

I make these jokes and others when speaking publicly because humor helps break down communication barriers.

I got in trouble

p6On Friday evening, Laura and I attended the Biddeford-Saco Chamber’s annual holiday auction and dinner. By pure coincidence, my bidding paddle was labeled P-6,  the abbreviation of Maine Medical Center’s in-patient psychiatric unit (located on the sixth floor of the Pavilion wing.) I held up the photo and had Laura take a shot of me and my label.

I posted that picture on Facebook.

Some people thought it was funny. Other people did not, questioning why I could joke about mental illness but Gov. LePage could not.

The tricky thing about humor is its intent.

For the record, I chuckled when LePage said Nemitz should be placed on a suicide watch. The two men have been battling for four years, and frankly, I’m not sure who hates who more.

But either way, I think humor is okay, so long as its intent is somewhat calculated and not malicious in nature.

As someone with severe and chronic mental health issues, it’s not up to me or anyone else to tell you what you can joke about. All I ask is that you think about the consequences and lighten up just a tiny bit.

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Lie to me. I’m not that strong

My wife had to buy a cane yesterday.

It’s taken almost five years to get to this point – – and try as I might — I can no longer ignore the impact that MS is taking on her body, her spirit.

Worse yet, there is not a goddamn thing I can do to stop it or even slow its progress.

Against this disease, I am useless.

Laura 9Despite the lies that the boys and I tell ourselves, despite all the distractions: the self-inflicted chaos, the thousand other natural shocks that flesh is heir to, the disease has a one-up on us tough guys.

Every day, in just the smallest, almost invisible of ways, I lose a tiny sliver of the woman I adore; and she loses little pieces of a still vibrant and blessed life during a steady creep toward loss of mobility.

By now you think I would have developed better coping skills, that I would be better equipped to face the reality. You would be wrong.

I am still a prick, thinking too often is selfish terms like right now. Not much better than the way I reacted when I learned of her diagnosis.

I talk about it because it warrants conversation. Because I have to publicly own my shitty performance in dealing with my wife’s MS.

Laura is stronger, smarter and far more courageous than me. She once jumped out an airplane. She is more spontaneous, easier to get along with: daring, loving, funny and kind.

Some days are better than others. Yesterday was a good day: Yeah, she bought the cane but we also laughed during a wonderful dinner with friends in Portland.

We all have our crosses to bear. I just wish sometimes I could ignore it a little while longer.

To learn more about MS and how you can help fight the disease, check this.

The needle and the damage done

It is paper-thin and measures only 8 by 3-1/2 inches, but it scares the hell out of me.

It has been sitting on the dashboard of my truck for several days, just there. Always visible. Always reminding me of what I cannot escape.

It is a placard that allows parking in disabled parking spaces. You know the one. The little, gender-neutral stick figure that sits in a wheelchair against a crimson-blue backdrop.

I have been struggling with writing this post for the last several days because I am terrified of both its content and the potential reaction from those who read it.

The reason I have the placard is because Laura was diagnosed with MS in December 2008. Since then, she has experienced fluctuating levels of mobility; and I do my best to ignore it. To brush it off. To think it will eventually go away.

Some days are better than others.

That’s how it goes with MS, people tell me. I try to pretend that Laura is just tired or maybe a bit depressed. Maybe if I work just a bit harder, just a bit more, it will go away. That is a child’s thinking. That has been my thinking.

Make no mistake, Laura is lucky. Her MS is fairly manageable. She is able to go to work each day and leads a more than productive life.

But still, I wonder. Me, the eternal pessimist. This disease is slowly, but deliberately, taking away a little piece of my wife each day, no matter how much I try to deny or ignore it.

I still remember the day she was diagnosed. It was just a few days after Christmas. Laura had been experiencing a strange numbing sensation on her face. She made an appointment with her doctor. He recommended that she see a neurologist. At the time, we both thought it was no big deal.

I was home and knee-deep in ethernet cables, when Laura called me on the way back from the doctor’s office.

I didn’t take her. My mother-in-law drove her to and from the appointment. I regret that decision to stay home with the kids and work on hooking up their computer to the internet. But I don’t regret that decision nearly as much as I regret the things I said to her when she finally got me on the phone.

“Hey,” she said in a soft-spoken tone that belied the news that should have followed. She wanted to tell me in person, face-to-face.

“What,” I shot back, only half paying attention, much more focused on the twisted mass of blue wires wrapped around my feet.

“I was wondering if you could start a pot of coffee,” she asked.

I was livid. I had already done three loads of laundry, paid the bills and vacuumed the living room. The computer wiring was near the end of my “to-do” list and the thought of one more thing sent me over the edge. Idiot, that I am.

“You want coffee? Make it yourself,” I barked. “Do you know what kind of day I’ve had? Pick up a cup from Dunkin’ Donuts or whatever, but just leave me alone.”

Silence.

“What’s your problem?” I continued. “You’ve been out shopping with your mother, and you want me to make the fucking coffee? Could you be any more lazy?”

“Sorry, ” she said. “I didn’t mean to bother you. I’ll take care of it myself.” And the phone went silent.

She arrived home maybe 20 minutes later. I was still up to my knees in tangled cords. She brought me a cup of coffee and asked if we could talk.

I was still exasperated. “What?”

“They diagnosed me with MS,” she said, trying very hard to hold back the tears.

I let go of those silly cords. We sat down at the dining room table and began our latest adventure.

If you think I was a prick then, I can assure you that I haven’t done much better since.

I avoid conversations about MS. I avoid the annual MS Walk. I don’t want to think about it. I want it to go away.

Every other night is “shot night” at our home. Every other night, Laura injects herself with Betaseron to keep the illness at bay. Every other night, I turn away and find something else to occupy my thinking.

I love my wife. Honestly, I do. And I know she needs my support. Again, some days are better than others.

So today, marks the first day that I used the placard. We took Laura’s mother to Wal-Mart. We parked in one of the disabled spaces. Betty was moving through the store like a speed demon, anxiously making her way toward what would hopefully be her new television. She is 66 years old and she left me in the dust.

Instinctively, I paused, and turned back to check on my wife. I could tell that Laura’s energy level was dropping quickly. “Are you okay,” I asked.

“Yeah, she nodded. “I’m fine.”

I knew it was a lie, and once again…I played along.