Requiem: Amy Bleuel

Amy

I suppose I should write something about the death of Amy Bleuel, the founder of Project Semicolon.

Amy committed suicide.

It saddened me greatly, but did not surprise me.

There is a dirty little secret in the depression/bipolar community that we don’t talk about because it goes against the eternally happy you-can-do-it ethos slammed down our throats in America:

15% mortality rate.

That, strictly speaking, is the fatality rate for people with bipolar disease, not necessarily depression. It is the number of people who will die as a direct result of their disease either by suicide or some other behavior associated with the disease that results in death.

Some cancers have a lower fatality rate. Yet, we see cancer as a medical issue to be addressed with great resources. We see mental illness, as a corporate society, as something to be tolerated within boundaries while Big Pharma develops one useless drug after another.

The dirty little secret is no one can tell, no one can predict, no one knows for sure whether the smiling, outgoing, full of life person you knew on Monday isn’t going to be swinging from a rope on Tuesday.

And the scary thing is – the person with the illness generally doesn’t know it either.

So did Amy, who was a depression sufferer with other attempted suicides, wake up one day and Klingon-style, declare ‘this is a good day to die?’

Perhaps, but we’ll probably never know; and that is the worst part.

Experts prattle on about ‘suicide prevention’ as if there was some kind of ethereal naloxone for mentally ill people that can ‘sniff’ out those predisposed to suicide and offer some kind of fix to get their tortured brains to see things ‘a different way.’

It’s all bullshit. We exist by the grace of God, if you’re a believer, by sheer luck and circumstance if you’re not.

Amy Bleuel, like every one with this illness, fought it every day. And every day, like the rest of us, she woke up wondering what hand her brain was being dealt that day. Or, think of it this way – every day you get up and roll the dice. One day it comes up snake eyes. Why? No idea. One day your brain says, that’s all.

That’s all I can stand. Take the pain away.

And no amount of cheery self-help bullshit or bootstrap mentality is going to have any effect. Sorry.

One day, all the king’s horses (psych meds) and all the king’s men (mental health professionals) can’t put your shattered brain back together again. Self-medication has reached its limits and your brain told you that finally on this day, you could indeed, fly.

We still do what we can in terms of reaching out for help, taking our meds, battling the demons within. But the one thing no one talks about is the demons outside – a society and economic system that is unforgiving to those with these illnesses. Never discount the effect that the world we live in can deal from the bottom of the deck or load the dice any given morning.

But since society won’t change and it’s still winner-take-all, dog-eat-dog (and getting more so), at some point there is an existential angst that contributes mightily to the brain’s decision to push the button.

Amy’s whole cause was to get the survivors and the sufferers to find each other and find strength and support. It was also to use that semicolon tattoo as a way to try to educate a society on how many of us are out there fighting in ways you’ll never know.

But there was something else. Amy was a believer. She believed in a God of love and mercy and tried her best to express that in everything she did and said.

“Faith for me plays big around the aspect of love and hope. I have had the opportunity to have people come into my life and love me with a Christ like love. Through that love I am empowered to continue my story and spread that same love to others. To have faith in something bigger than yourself allows you to keep striving for something more, something bigger.” – Amy Bleuel

I don’t know what to say. There are no guarantees. One day, for reasons no one else will understand, it will be the day. People search for reasons but sometimes there are no reasons; there are only reactions.

If I could give any advice at a time like this it would be this: understand that no one really wants to die. They just want to feel like they are needed and wanted, not shunted aside as a societal embarrassment. They want dignity and respect, not frightened stares and mumbled excuses.

For whatever time people have on this earth, they need a mission that connects them with what is real, what matters – not the false values of consumerism, but the interconnectedness of human souls that, working together, can truly save the world.

“People want to know they’re not suffering in silence, you feel alone like no one cares, to know someone is there, that is what these people go forth with, they take this energy to better themselves,” Bleuel said. “I think it’s just opening the minds of society. I would hope through my stories and platforms that they would see these are everyday people, just like you, and they’re attempting to make their lives better, but here is what they struggle with.”

“I wanted to start a conversation that can’t be stopped,” she said, “and I believe I’ve done that.”

Notes from the Schlub

Ah, a book I need

What do you do when you think your life is somewhat on borrowed time?

The WaPo reports this morning that Jared Kushner is being give wide powers to restructure the Federal government with their first sites set on the VA.

I’ve been a worrier all my life but I’m trying not to let this get to me. I have a job today, I’ll have a job tomorrow and I don’t want to live my life as if the roof is about to cave in any second. There’s been too much of that in my time on Earth.

And I’m also feeling guilty about worrying about me when there’s so many people around the world worse off. And there are a lot of good people right here doing their best for our country’s Veterans. They deserve better too.

In any case, war could break out in several places tomorrow rendering a lot of extraneous worry moot.

We’re lucky. We’ve been lucky. Perhaps it’s cosmically just that the luck, my luck, runs out at some point. But when I look at the horrible disparagement of income in the country, compared to what it was when I was a young adult, I feel less justified in guilt. There is plenty of pie to go around – for everyone. What has happened to many people is nothing less than economic violence. I’m afraid it’s going to get around to formerly lucky ones soon. If not, then robots will do our jobs. I’m waiting for the first fully mechanized McDonalds. I don’t think it’s too far off.

***

I’ve been a little rough on my psych doctor lately. It seems that the luck of the draw is the day I see her, something bad has happened and I’m in a downward spiral. She lets me vent, reminding me this is the place for it, but in fairness, she doesn’t deserve it. No one does really. I guess the measure of venting effectiveness is if you feel better afterwards. I don’t; I feel guilty.

***

There is something to be said for being electively bald. I recently had my head shaved as part of a fundraiser for St. Baldrick’s Foundation which helps children with cancer. The shaving party was at a local bar and I had an uncharacteristically fun time. But I also wanted to see what my large noggin would look like without hair, plus a beard that I was re-growing.

I knew the beard would come in mostly grey and I was prepared for that. I think it looks pretty good, my wife will get used to it but surprisingly, many of my FB and IRL friends like it too.

Two of them have said I look a little ‘BA’ (bad ass). I don’t think that’s a term that has ever been used to describe me in my life and I’m not sure how to take it. I hate being ‘lifestyle-ish.’ That is, someone who tailors themselves to a particular lifestyle (and associated look) whether it comes naturally to them or not. I’ve always been ‘me,’ which is to say, something of a schlub (and yes, I know my Yiddish).

Not saying I’ve never exhibited streaks of talent and lucidity but always within the framework of schlubbiness. I’m not sure I could pull off a new persona for even a week. 

Spoon issues

Spoon theory, for the uninitiated, is a way for people with a host of behavioral issues to explain how they deal with stress.

You are given a certain amount of spoons every day from the great spoon-giver. Each spoon represents the amount of social interaction or physical activity a person can expend before the need for what we’ll call regeneration.

Regeneration usually, for most of us, means spending time alone with our thoughts to process the situation and regain emotional strength to go out into the world and interact again. Those of us who live with social anxiety use spoon theory as a simple way to explain what we go through but we don’t really expect people to understand it. At least I don’t. It’s impossible to empathize unless you can feel it.

Anyway, I have problems on weekends recovering from work. It’s really starting to piss me off, perhaps more so now that it’s so obvious. When things were bad, weekends melted together with workdays since the level of stress and hyper-vigilance was constant. 

Although the ‘bad times’ I experienced are receding into the past, the emotional scars remain. I feel them every time I drive onto the property at work. The subdued, yet ever-present feeling that I am always one word away from having the moon and stars fall on me again is always there. 

But the overt threat of losing my job or being shot by the police in a botched ‘health and safety check’ is gone and now weekends should be a time for me to ‘do’ and enjoy more than sit and worry.

And yet, Saturday morning arrives and I make it to the couch and find I have a monumental task trying to raise myself back up again and get on with the day. Other than the bed, the couch is my ‘safe place.’ 

Yesterday I went to the cast dinner for the performance of Listen to Your Mother, an event I have been very much looking forward to.

But yesterday morning I felt entirely empty of strength and filled with worries. It took everything I had to get ready for this happy event. The cast had lunch at Lidia’s and read our written stories to each other. My worries included how I, as the only man in a 12-person cast would be received, and the usual fears about driving downtown exacerbated by the St. Patrick’s Day parade being held at the same time.

As usual, my fears were groundless. Listening to everyone’s stories was literally a transcendent experience.  Being around such creative and intelligent people was like breathing pure oxygen for me. 

And yet, when I got home, in no time flat, the feeling of excitement and stimulation drained quickly and I was back on the couch, dog tired, wired and fried.

And mad.

I am so sick of this. 

I should be over this. But I should have realized long ago that my conditions, which have waxed and waned my whole life, will be with me always. Thirty years of meds, shrinks, zen training, ‘lifestyle changes,’ weight loss and exercise have not exorcised this beast. I will carry it to my grave. 

It is my shadow. I can, under certain conditions, banish it for a period of time or land up in hypomania – where I’m in a fun and creative period making everyone else’s lives miserable.

But it always comes back.

I vent to my wife but she’s heard it all before and I know that my moods affect hers. So I try to keep the feels to myself.

“Why couldn’t this feeling last just a few hours longer,” I asked my wife and the universe. 

Why indeed? Would it be so much to ask to at least go to bed feeling the warm afterglow of an enriching, life-affirming experience?

But that’s not the way things work. Every day is a fight, sometimes easier than the day before, sometimes not. Two days are never the same and the differences in mood and energy from one day to the next can be so stark as to be scary.

I must realize that getting angry at the situation or getting angry at myself for not being able to maintain a steady mood state will get me nowhere except more frustrated. 

Somehow, at this late stage of a lifelong struggle, I must learn to accept the situation with grace, appreciating the good periods as well as the bad. 

Easier said.

Touched by Fire

Carla (Katie Holmes) and Marco (Luke Kirby), prepare to be taken to their home planet. No, I'm not kidding

So, I watched the movie ‘Touched by Fire’ yesterday, by myself, while my wife was out shopping. Well, about 2/3rds of it because she came back.

I didn’t want here to see my reactions to the film. And, to be honest, I wanted to watch it alone, just in case there were any reactions. And there were. 

This requires an explanation which I’ve tried to give my wife in my own recently disjointed style of explaining myself. There are activities at home which, while they may seem innocuous to the outside observer, would make me feel self-conscious if anyone saw them.

Often, I wander from room to room, stopping to examine things, especially in the basement where I pull out old artifacts of a previous life or stare at fading photographs of a family long gone. I realize so much of this is self-torture, yet I’m drawn to it anyway.

I’ll talk to myself – long rambling soliloquies that either try to explain my actions to myself for the 119^th time or a string of things I need to remember or comments on current events. I can only do this alone for reasons that, for anyone similarly afflicted, are all too obvious.

Many times, I’m buried in the Internet (interesting choice of words) doing what I usually do: finding the information that reinforces my cynical and negative view of humankind. I guess if human society is stark raving mad, I must not be so bad. Current events are reinforcing this view at a prodigious rate.

So, we come to the movie. Briefly, it’s about two young people, probably in their mid-20s, both afflicted by bipolar, both having trouble staying on their meds. They annoy their families, are given to delusional, grandiose thinking and land up meeting each other in a mental hospital where their manias merge like two flaming suns and lead then down the rocket slide to near total insanity.

They are both rescued, a few times, a return to the mental hospital where they are put back on medication. Although the staff tries to keep them apart for their own good, they find each other again, a pregnancy results with all its usual complications and . . . well, I won’t ruin the ending. 

The important thing to me was how much I saw of myself in the characters. Now in middle age where the body (and the medications) start to regulate the amount of mischief the mania mind can accomplish, I had to think back when I was in my 20s and 30s with more freedom to act on my delusions and yes, I can see more of myself in their behavior. It just came out in different ways and circumstances. No two bipolars are alike, after all.

And the movie couple are bipolar1 and I am a twosie which means my whipsaws between depression and mania are not so sharp. Also, not being on your meds makes both the ones and twos equally capable of fucking up their own and others’ lives. Us twosies tend to fall much more on the depressive side of the scale but in some of us, although our manias are less bombastic, they can last longer and, in some cases, do more long term damage to our lives and others around us. 

What happens to Marco is what many guys with bipolar disorder struggle with. He finds that on his meds when he attempts to have sex with Carla he feels nothing and can’t get into it at all. The mind is willing, to a certain degree, but there seems to be a governor on the body’s and mind’s ability to carry out the act. This is MAJOR issues with men on medications for bipolar. The other problem is that the meds, while keeping your behavior and thoughts within a socially acceptable range, also tend to crush the creativity and heightened enjoyment of life most people in mania experience.

At one point in the movie, Carla assures him, based on what their psychiatrists say, that he will gradually be able to experience the full range of motions (not always true). Marco replies he doesn’t want the full range of motions – he wants mania. 

Whether you’re a onsie or twosie, great things can be accomplished on mania. Much of it is artistic – writing, painting, dance, etc. Much of it is activity based – a sudden compulsion that the whole house is now out of style and needs a complete makeover – and you do it. I can still remember gardening at night (yes I know it’s an R.E.M. song). Personal relationships are at risk – everyone else suddenly seems more attractive and interesting than your partner and you want to feel the rush of what it’s like to start a new relationship – no matter who gets hurt, because you’re not thinking of that. Sometimes you just want to get away – to travel and grab as many experiences you can while family members are left baffled by this sudden compulsion to take an instant vacation – alone. And then there are the other compulsions toward great creation and schemes. 

My mania gave me the incredible (to me now) ability to build a bookstore out of nothing including all the planning and design. My ex-wife wandered into my store for the first time and her jaw dropped. “You actually made it happen,” she said amazed. “You actually did it.”

So it cost me a marriage. But what an accomplishment!

At some point when the maniacal haze burns itself out or when the meds start working, the bipolar person has a crushing realization, a kind of ‘what in God, possessed me to DO that?’ The refrain is similar: it seemed like a fantastic idea at the time. Many times, in this phase which is often accompanied by depression and severe regret, we want to apologize to all the people whose lives we’ve upended or hurt. And apologize over and over again.

But after the mania burns out and time passes and we’re good little boys and girls and take our meds, there comes a longing for the energy and excitement of that time. Things get hum-drum and boring playing at life using the normal rules. We miss a time when things were fresh, new and exciting. We don’t forget the wreckage we left behind but we’d just like to feel what we felt when we were able to accomplish something so grand and glorious. Because now we can’t.

Because now we’re accomplishing holding down a job, taking care of our living spaces and significant others and marching slowly and safely through a life that no longer inspires us. And death awaits. For many men, it’s the long, slow, middle aged march to the grave where, instead of firing up grand, exciting ideas in your mind, you spend more time checking your bank accounts and what’s in your retirement savings. Hardly seems like living. 

You make and lose a lot of friends along the way until you’re left either partially or totally alone. I miss the parties of my youth but I can tick off the last five times recently I tried to become part of a group in some way and landed up either alienating or being alienated from them. 

And we begin to think that for our own good, perhaps we should just stay at home when we can, inside our homes with our significant others and limit human action to Facebook, where we run in to trouble anyway.

Notice how many times I have switched between ‘I’ and ‘we’ in this piece? Draw your own conclusions. 

Would I recommend ‘Fire of the Mind?’ Yes, even though the writing falls into sentimental claptrap, stock parental characters give stock parental lines and some of the acting and writing could have used a bit more of a realistic makeover. It’s enough, as usual, to make any afflicted person steer away from being honest about their condition to anyone, especially to mental health professionals.

I’m cautious that the film will not dispel but reinforce stereotypes about bipolar people and people with other mental illnesses in general. Is it worth the attempt? After all, ‘Rainman’ did so well to raise the awareness of autism, didn’t it? Well, if you want an honest answer to that question, ask anyone on the autism scale who has seen the movie. And so it is the same here too.

I suppose we could make the distinction between bipolar people who are relatively easy to spot and the vast majority of those who sit quietly next to you on the bus or plane, who write the articles you read, make the food you eat, create the art in galleries you marvel at, etc. And you’d never really know. How about the person at the business meeting who has an idea and his/her enthusiasm is so infectious, that everyone in the room is fired up by the idea (which may or not be feasible since the long-term prospects may not have been considered) that they jump out of their chairs in support and the boss says “we need more people like him/her around here!”

Yeah, they could be. 

Because life and relationships are long, we reveal ourselves in some way eventually. Either peers don’t recognize this sudden change of energy and idealism or regard it as symptomatic of some other factor or mental illness. Many times, I’m sure, people think the bipolar person has discovered some new kind of recreational drug when they truth is, they’ve actually stopped taking a drug.

The author David Foster Wallace, whose affliction and brilliance is reflected in his writing, was similarly tortured with what most professionals diagnosed as depression which began as a child and which he referred to as ‘the bad thing.’ He was able to create brilliant work while making his way, somewhat awkwardly, through the world of normals. He worried however, as the pressure grew from those in publishing and his fans to continue to produce even better writing, that the meds were inhibiting his creativity. In fact, I suspect ‘Infinite Jest’ was probably written off his meds.

Anyway, Wallace stopped taking his Nardil which led to severe behavior issues. At this point, both Wallace and his shrinks flailed around for something else that would work – anything that would work. In desperation, Wallace went back on Nardil but it no longer worked for him. As we say in the world of psychotropic meds, once a med craps out on you, it craps out forever.

Long story short, Wallace tragically hung himself. 

But when you take an honest look at Wallace’s behavior throughout his life, I think a strong case can be made that he was also on the bipolar scale. My early diagnosis of depression or major depressive disorder, masked the bipolar that was hiding behind the depression. Remember, your psychiatrist/psychologist only sees you for one hour bits of time where you could be anywhere on the scale. They don’t live with you, go to work with you, see your personal interactions. They know what you tell them, true or false (or somewhere in the middle) for the slim hour a week they see you. They really don’t know you. Sometimes no one really does. 

So, we’re left with a confusing mix of people with bipolar, ones and twos, with varying symptoms that wax and wane due to many different reasons. And movies can never really display a compendium of the average bipolar person. Movies must be entertaining and broad to be profitable. We get that. So, it’s a double-edged sword of hoping for awareness while fearing further stigma.

But, rounding out this terribly long post, ‘Touched by Fire’ did deliver a few serious gut punches to me. I could predict some of the action. I could see myself in some of the situations or dialogue. And if you’re wondering, yes, sex between two people in high mania could move mountains. . . before destroying them.

So, with all of those caveats, it’s worth seeing. If nothing else, I could identify with some of it which made me feel a little more comfortable with myself while still mourning what was and what will never be again – and for good reason. The ending imparts that lesson.