Too Damned Hot Already!

95°F=35°C= too damned hot for the month of March, even in Southern Arizona.  But wait, “there’s no such thing as climate change.”  That must mean that it’s now normal to have temperatures >15 degrees above normal, in a sustained fashion, two years in a row.  OK, I’ll try to squeeze yet one more incongruity the size of Texas into my pea-sized brain.  

For reasons that are well explained by Ayurveda, my tongue got the word about the heat wave first:

That thing that looks like a small liver on the underside of my tongue is an aphthous ulcer.  It’s the classic “punched out” kind.  Makes me feel pretty damned punched out, let me tell you.

That was a few days ago.  The ulcer kind of propagated into the back of my mouth and throat.  I’ve been literally living on aloe vera juice and coconut water, which I leave in the freezer and sip on.

It occurred to me that this was rather more ulcer-ness than I’m used to.  I get them every few weeks or months.  A Crohn’s thing, you know: it’s a “mouth-to-anus” disease.  Meaning that, lesions can occur anywhere in there.  And do.  

My brain survives and at times even thrives, by continuously scanning for outliers.  That’s how the prey animal survives.  That ripple in the tall grass that wasn’t there earlier?  Lion.  That shadow in the water?  Crocodile.  

Those bizarre mouth ulcers?  Could be just the ol’ Crohn’s monsters.

And on the other hand…there’s lamotrigine (Lamictal®).

Ever since I landed in the hospital in 2001, and ever since the amateur psychiatrist who tried to kill me with every antidepressant under the sun nearly succeeded, and ever since she thankfully went on vacation and left her on-call beeper with the brilliant neuropsychiatrist who correctly identified my brain as bipolar, I have faithfully taken my “L&L cocktail” every day.  Lamictal in the morning, lithium at night.

It’s worked better than anything else.  It’s been my staple.

There’s a problem, though.  It’s been a theoretical problem, till now.

Lamotrigine has one major potential adverse reaction.  It doesn’t happen often, but when it does, it can be devastating.  It’s called Stevens-Johnson Syndrome.  (The linked article downplays what the syndrome really looks like….)  It’s a known and much-feared adverse event that’s associated with Lamictal.  That’s the reason for the very slow dose buildup, if you’ve ever taken it, and the huge black box warning that says if you ever get these nasty lesions, stop taking Lamictal immediately.

My tongue up and turned completely white, then started peeling.  I put my Lamictal away.  Increased the lithium dose by 25%, got out some high CBD cannabis to help with the transition.

If you take medicine for brain stuff, you just naturally deal with side effects.  How not?  Most of this shit we dump into our bodies, no one has any clue what they actually do, outside of the one thing they have to look at for the studies.  Beyond showing that this does or does not increase dopamine levels in the brain, for instance, researchers are not able to predict every single one of the thousands of other chemical interactions a medicine may set into motion all around the body.

Fortunately most side effects are merely unpleasant but not life-threatening.  Stevens-Johnson is extremely unpleasant and also life-threatening.  You just don’t want it!

Lithium has its bad side too: kidney failure holds down the position of real bad actor.  But lithium won’t kill you today.  It might take decades.

On the other hand, Lamictal’s dark side will put you in the burn unit…or the grave.  Right quick.

It’s a terrible choice to have to make: my sanity or my life!  There’s no percentage in trying to gamble with Lamictal, once these mucous membrane lesions appear.  There’s no guarantee that a break from the drug will fix the problem.  For me, this is the red line.  No more.

So what am I gonna do now?

Well, I’ve increased my lithium dose.  That means I have to be incredibly careful in this heat, because lithium can become toxic via dehydration.  And since lithium has a diuretic effect, that makes it even harder to stay hydrated.

I’m making plans to move to somewhere cooler after the end of the month, when I have my hand surgery recheck.  Oregon is sounding good to me….

And yes, my medical cannabis is once more doing yeoman’s duty.  I read an abstract of a study that looked at using CBD to treat psychosis.  Holy crap, the stuff holds up alongside conventional antipsychotics, with absolutely zero side effects!  I’m on that bus.

Alice B. Toklas Rides Again…and again…and again…and….

Chocolate.  More chocolate!  Gluten free.  And….medicated!

Yes, I tried a piece hot out of the oven.  I need the medicine, and the chocolate doesn’t hurt. It’s medicinal, too, after all.

The wind is kicking up a ruckus outside with the kinds of cactus that blow around so they can stick in your dog’s feet the next day.  It contributes in a bad way to my current state of ultra-ultra-ultra rapid cycling, punctuated by a few episodes of the dreaded mixed state.

I used to take Seroquel for this.  I’m not sure it broke the cycle, but at least it knocked me out so I could get a break from it.  But I started getting very bad neurologic side effects from the Seroquel, and had to stop it.  Some of the nervous system damage has turned out to be permanent, so there’s no way I’m going to try any other drugs in that class (atypical antipsychotics).  So in a word, I’m fucked.

But there’s a Lone Ranger on the horizon…I hope.

I have been so remiss in writing here that I can’t remember what I’ve told you.  Here, I’ll recap:

Spine pain got bad, had lots of consults, results: spinal arthritis, many collapsed discs, moderate spinal stenosis, and…drumroll…five vertebrae are filled with a benign tumor.  It’s benign, because it doesn’t metastasize, but it’s locally destructive.  And I have it in my liver, and god knows where else.

There are other joints in this pity party.  None of them are smokeable.

Which brings us to The Point:

I began using medical cannabis over a year ago.  It takes my spine and joint pain from “all-encompassing, intrusive, consuming” all the way down to, “OK, I can definitely feel this, and I think I’ll do the laundry and walk the dog now.”

That’s the difference.  Of course, I use a special strain of cannabis (PennyWise) that is engineered to have analgesic, anti-inflammatory properties while not being overly psychoactive.  I can get things done, and I’m not constantly going, “Ouch!  Shit!  Fuck!  Damn!” and so on.  Like, right now my thorax is aching and so is my neck and shoulders, but I’m not paralyzed by it.  Nevertheless, I am going to stop writing all hunched up, and go light my Hanukkah menorah.  Sixth night.

When Is Enough Enough?

I lived with my father as he slowly died in increasingly excruciating pain over years and years.  When my mother was home, she forbid him to say, “I hurt,” and she withheld his pain medication “because it made him sleep all the time.”

He slept all the time anyway, because that was the only way he could reduce his pain level.  He groaned in his sleep, though.

Unfortunately, I have inherited the disease that caused his pain: degenerative joint disease, with the added agony of degenerative disc disease.

For the past few weeks the combination of mental and physical pain has me close to the breaking point.  I can’t take opiates because they make me itch, and my skin condition makes it impossible to scratch without tearing off pieces of myself, leaving a wound that takes a month to heal.  In addition, the docs in this part of the country are so afraid of opiates that they refuse to prescribe.  So I’m stuck with using mj, which is somewhat illegal here.  But I have things to do, so I can’t use enough to really relieve the pain, because that would put me in bed.  So I’m screwed.

The psychic pain–there are no words to describe. 

Part of it is endogenous.  Part is environmental–the part of the country I’m stuck in at the moment is grey and damp, two things I can’t stand.  The sun came out for five minutes today and it was balm to my soul.  I’m out of here just as soon as my task is done.

My task is to clean my stuff out of my father’s old studio, where I lived for the last four years of his life.  It took me four days just to clear the spiders out.  Now I’m sorting  through things, making three piles: throw out, because of damage from humidity; give away, because I’m not going to use anymore; keep.

Just to to the situational depression off, Atina is not doing well.  This week her labs were worse.  Her kidneys are getting leakier.  They’re no longer holding her blood proteins in her blood.  They were leaking protein before, but her serum proteins were holding their own; now her kidneys are leaking more than her body can produce to keep up with the loss.

Today we took a short walk in the woods.  It’s been raining for weeks, and since it had stopped this morning (but is back now) I thought it would do us both good to take a walk.  But she wasn’t interested in playing in the creek, and although she carried her ball, she didn’t want to play with it.  And she simply collapsed halfway through where I wanted to go, which is only half a mile on flat ground.  I had to sit down and wait for her to recover.

Now she has fallen off the driver’s seat, which is where she normally sleeps, and is passed out on the floor where she landed.  It looks like she’s nearing the end of her sweet life.

When will my misery end?

I want to stay alive until my son finishes his Ph.D in May.  I want to see him off on the next part of his journey.

He and I have talked about what we lived through with his grandpa, and that I have the same illness, with the added fun of bipolar.  We have had the talk about what will happen when I can’t stand the pain any longer.

It’s one thing to talk about it, and another thing to live it.  I know he’ll survive.  But losing one’s mother is a terrible thing.  And living in agony is a terrible thing.

There will come a tipping point.  I keep on living for others: for my son, for my dog…should I get another dog?  Can I live that long?

In three years my income will be drastically reduced, to the point where I literally can’t live.  I guess that will be the end of the line, if it doesn’t come sooner.

OH NO!!!!

Hello, dear readers.  I think I have flipped.

I caught myself giving me a pedicure at 11:45 PM.  And really enjoying getting artistic about it.  It came out brilliantly, if I may be so obnoxious.

Hm.  Something does not feel quite right.

So I smoked half a joint, meditatively.

That’s when I got it.

I have been a slump since last Wednesday.  Well, not exactly a slump.  I would call it a triggered, dissociated, PTSD’d mess.  But it seems that under that pile of oozing slime, the Black Dog was lying relaxed, head up, tongue hanging out and dripping, waiting.

As I was enjoying my joint it hit me:  Silly silly, you have been depressed all week.  I mean, you have felt terrible, am I wrong?

But now have no fear, because Hypomania has made her entrance.  What fun!  Actually it is, if I don’t ruin anything important in the process.

Who knows how long I could stay up tonight, answering mail since last fall and calling Israel to check on the abysmal state of my bank account, since I haven’t been back in almost a year.  I could, in fact, put away the unspeakable piles of **stuf** that has collected on every flat surface.  I have to push objects away on the table in order to have space to eat.

No, not really that bad, most of the time.  Just during the down spells, where I have no interest whatsoever in that big envelope that promises instant gazillionair-hood.  I throw it all on the table.

Then if I’m lucky I’ll have a nice productive flip.  If I can stand still enough I can get all sorts of things done.  But **sigh** there is little danger of that.  Plenty to do in the big world!  Now, if I can just find a way to stay in this pleasant condition and not get into a mixed episode (shudder) or pop all the way into mania–not fun……..but now for the extra dose of Seroquel so I can get some sleep tonight….

Mania Strikes Again

Why does it always happen the night before I have an appointment?  Not even an anxiety-inducing appointment, just a regular one that I simply need to get myself to and show up for.

Last night I took my bedtime meds at the usual time, did my whole pre-bedtime ritual: take meds, brush teeth, give Noga the Wonder Dog her brief nightly training session and resultant treats; get into bed with a book.

In general, by the time I make it into bed, I’m crashing, and sometimes don’t even make it through the “putting on pajamas” stage, but wake up in the morning to find myself half naked and freezing. The nights here are still chilly and I might not have got to far along as to pull up the covers.

The important part out of all of this is sleep.  I have never been good at sleeping.  Even as a child I spent many nights wide awake reading by flashlight under the covers.  At about dawn when the birds were waking up and sleepily cheeping, I might fall asleep for the two or three hours before it was time to get up for school.

Last night there were warning signs.  An hour after my bedtime cocktail of 50 mg. Seroquel, 1 mg Clonazepam, 1 mg Lorazepam, 10 mg Ambien, plus 300 mg Lithium, I was not remotely sleepy.  Not good.  I waited another hour.  No dice.  The book I was reading became hilariously funny, and I convulsed with laughter.  My Psychiatric Service Dog, Noga, alerted, and left her spot at the foot of the bed.  She peered into my face, assessing my condition.  She parked herself nearby, keeping an eye on me.

Noga, the Angel Puppy

Noga, the Angel Puppy

I started my prescribed protocol for incipient mania.  First try to knock it down with benzos: a couple more milligrams of Lorazepam, another milligram of Clonazapam.  Wait another hour.  Nothing.  I’m starting to look for a wall to climb.

Time to pull out bigger guns.  Another 50 mg of Seroquel.  Wait another hour.  Nothing.  Another 50 mg.  Nope.  Another 50 mg.

All this while, I am feeling like I have bugs under my skin.  Antsy, fearful that this is going to go into full-blown mania with hallucinations and everything.

It has started to pour down the rain, buckets.  By morning my rain gauge would measure two inches, and the river below my dwelling raging out of its banks.

My whole-body arthritis, aggravated by the weather, is making it hard to play solitaire on the iPad.  That’s my usual ticket to boredom leading to sleep, but after a couple hours of painfully tapping cards, I give up and take a pain pill–a very mild one, ten mg. codeine and 500 mg. acetaminophen.  Not enough to dangerously interact with the piles of pills I have already ingested, but by this time the only thing that concerned me was what would happen to my dog if I died.

Meanwhile, Noga the Wonder Dog has glued herself to my side and won’t budge, even when I jockey for more room in the bed.  I move her over and slide over myself so I won’t fall out when the drugs finally (hopefully) hit. She immediately sticks herself back in position against my body, licking whatever parts of me are exposed.  We snuggle and smooch for what seems hours.  She loves snuggles and smooches.  She is my Angel Doggie!

I send my morning appointment an email apologizing for canceling.  Of course I lie, saying that I was sick due to something I ate.  I turn my alarm off.

It’s three o’clock and I’m finally slowing down and getting sleepy.  Noga is cuddled up by my head.

I wake up around noon.  Fine, except that I really do have to go into town today (town is an hour away) to get some things for Friday night dinner.  I struggle out of bed, make a strong cup of coffee, get into my recliner under my “happy light.”  I’ll go as soon as I’m safe to drive, when the muzzy druggy feeling wears off.

Noga starts vomiting.  Why do they always have to throw up on the carpet when there is a perfectly good expanse of bare floor available?  I catch her before it comes up and place her on the floor, petting her while she pukes.  Lhasa Apsos routinely vomit when their stomachs are empty for a long time.  She’s been watching over me for 14 hours now, setting her own needs aside in favor of taking care of me.

After she gets done puking I call her over to the “treat station” and put a few yummy things into her tummy.  Her food is in her dish, but she ignores it until her dog treat hors d’oeuvre piques her appetite. She gobbles down her breakfast and hops up to her usual place on the left arm of my recliner, where she is now firmly established.

She literally stuck with me all night, watching over me and caring for me as if I was a sick puppy (I was).  And now she’s back on the job, after a bit of breakfast and a drink.

Through depression, through mania, she is my Psychiatric Service Dog, always on the job. She takes her job seriously.  I would love her anyway, even if she weren’t my Service Dog Angel, but the psychic connection between us is so strong that she’s like an extension of me.

I wish everyone could be so blessed.

Sleep, Precious Sleep

Yesterday morning my phone rang way too early.  It was a friend who probably though I get up at a normal time for a human being; but I don’t.

You see, my meds last twelve hours, and I have to sleep them off if I want to be functional the next day.

More than that.

If I don’t get the right amount of sleep, I turn manic.  Pretty simple, eh?  Meds>sleep>functional.  Not enough sleep (even with meds)>manic.

I needed to get up earlier than usual today, because there is a lot to do in preparation for Passover, and I needed a full day in which to do it.  This can usually be engineered by taking my night-time meds early.

So I did.

But nothing happened.  I didn’t get sleepy.  Instead I started feeling wired.

Uh-oh.

I thought, maybe I actually forgot to take my meds.  I looked in my pill box: tonight’s meds gone.  So I did take them, after all.

So I did what my shrink tells me to do under those circumstances: I took an extra Seroquel.  That usually knocks me down.

But not last night.  May as well have taken a sugar pill.

I took another, and a milligram of Ativan to keep it company.

Nothing.

By the way, in case you’re wondering, I left an hour between doses, sufficient to feel the effects of the drugs.

I was getting very concerned by this time.

So I took yet another Seroquel, an Ativan, and another Ambien (those are in my usual bedtime hammer cocktail).

Not one fucking bit of “sleepy” coming my way.

So I got out of bed, where I had been passing the time by watching Betty Boop flicks on Youtube, and began doing my Passover chores, since it was clear that I was going to have a short and shit day.  I got everything ready for cooking, chopped mountains of veggies, did all my prep work so all I would have to do is throw the brisket in the slow-cooker, throw the veggies on top, and not worry about it.

Finally the sledge-hammer anti-mania drugs took effect (oh for a few milligrams of Haldol, for quick knock-down) and I managed to get in bed before the blessed drugged sleep overcame me.

I still had to wake up earlier than usual this morning, to call the clinic and cancel my 11 am appointment for ER follow-up with my primary care doc.  I woke to my alarm, made the call, and lay back down to go back to sleep for a couple hours, since I’d already done my prep work and had the time for a longer sleep.

Nothing.

Not gonna happen.

So I got up, feeling cross and speedy, and made my oat matzah (gluten free), singed the meat, sauteed the veggies, made a sauce, threw it all in the slow cooker and sat down to write this.

I really want a beer, but now they’re assur, forbidden, because of being made with yeast.  Anything leavened is forbidden for one week.  Damn.  Oh well, maybe I’ll get up and clean.

 

I Am Alien

 

alien woman head

The first thing I remember, after they left me, was waking up in a box.  The sides of the box were clear, and I could see, through the half-dark, two white shapes gliding on padded feet to and fro, with stiff white headdresses. 

Scratchy wrappings smelling of something that made my eyes water bound me tight and I grew very afraid. Then I found that I could wriggle one hand free, and soothe myself by sucking the largest one of the digits.  This took away some of the fear.

After the half-light memories, I remember no more until much time had passed.

They had told me that I would not remember them, when they dropped my astral body into this receptacle, this mobile vessel that the natives here call “human.”  But I do have faint recollections of my real people, mostly in the form of feelings of kinship, and an understanding that surpasses words.

Although my memories of what happened after I left the box have been erased, I have seen a home movie of my first steps at the age of nine months post-emergence.  The movie shows a small native female running away down a sidewalk, falling, picking herself up, and running further away, until the large native identified as “my mother” runs and picks up the small one, carries it back to the starting point, and sets it down; whereupon the small female commences running away again.  The natives surrounding the movie camera are heard “laughing.”  The small female was me: trying, as soon as I attained locomotion, to run home.

Several years later they took me to a building full of native children, and a large female overseer gave each one a paper covered with shapes, and color sticks, and commanded all to fill the shapes with color.  I saw no point in this meaningless exercise and turned the paper over, so that I could draw a picture of my real parents.  The overseer objected strongly to this, and made me stand in a corner; this was a relief, as that way I did not have to participate in their ridiculous activities.  From then on I learned the ways of achieving the corner, and did spend most of my time there, dreaming of home.

At night I sat by my window for hours, pleading with my parents to come and get me, explaining to them that they had left me on the wrong planet for too long.  I heard them from afar:  Not yet, not yet.  Your job is not finished.  Not yet.

My native “parents” did not know what to do with me, since I refused to associate with the native children, whose language was simple and crude, whose games ridiculous, and who, at the age of six, could read nothing more complicated than “Dick and Jane.”  By that time I had read a good deal of my parents’ library:  Herman Hesse, Gunter Grass, Franz Kafka, which was my favorite, especially Metamorphosis.  This was by far the best thing about this world: books, because they took me away, for a time.

The animals were a relief from loneliness. They have great wisdom and do not require speech to explain their thoughts and wishes, which are many and subtle.  The natives have terrible misconceptions regarding the animals: they think that because the animals cannot speak as they do, that they must be an inferior race.  This is wrong.

In my readings I discovered that there are special doctors for people whose minds work differently from those of the rest of the natives.  In these times they are called “Psychiatrists,” but in earlier times they were called “Alienists,” because those who do not conform to the norms of this world are considered “strange,” or “alien.”  I also learned that beings originating from other planets, like myself, are called “Aliens” as well, because we are strangers in this world.

Upon a time, there were great houses called “Alien Asylums,” where Aliens were sent for safety.  I thought, perhaps, that in an Alien Asylum I might find some one like myself, from my own planet.  I wanted to learn all I could about these places, and to see if there was one nearby.  So I got out the great book called “Encyclopedia” and looked up “Alien Asylum,” and was shocked at what I found there.

The Aliens were tortured in a ghastly fashion, with straitjackets and cold sheet wrappings and electric shocks.  I decided that I would not go there; in fact I decided to try to mimic the natives so that they would not know that I am an Alien.

I did so by spending all of my time at my studies, or in reading famous books, or in working with the animals, so that they could see that I was a very good native.

Many years passed in this fashion, but then something—I do not know what–happened that damaged my gyroscope, and I found myself one moment flying toward the sky and my home planet, and the next moment crashing to the ground.  I was unable to right this malfunction, and soon it became known to the natives, who carried me against my will to an Alien Asylum.

Fortunately the Asylum was not like the ones in the Encyclopedia.

In fact, it reminded me markedly of my first days at school, where I was given the papers with shapes and the color sticks, and told to color inside the lines, if I wanted to get out.  I refused to participate in this absurd activity, and they gave a bad report of me to the Alienist.  He ordered them to make me swallow pills, many pills every day, that made me feel weak and dizzy.  But then I was no longer expected to color either inside or outside of lines.

When they released me from the Asylum, the Alienist sent me to be “Tested.”  A kind native woman asked me many questions and gave me puzzles to solve.  I solved many puzzles, until there were no more left.  Then she asked me to look at pictures of native faces, and tell her what the people in the pictures were feeling.  This I could not do, because I am not a native and I do not use their modes of communication.

After we finished all the tests, I returned to the Alienist for his report on their outcome.  He told me that I had Asperger Syndrome and Bipolar Disorder.  He explained to me what those things mean; but it was nothing that I did not already know.

I am Alien.

Alien spaceship

My Bipolar Life: A Mini-Memoir

My astrologer is in sort of a crisis mode these days, so I don’t really want to bother her with the question: Why is it that I am feeling bombarded by people who feel that bipolar disorder is something to celebrate?  It’s true that if I weren’t bipolar, I couldn’t possibly have accomplished the feat of living several concurrent lives.

I’ve got a lot done.  I’ve created little empires, and lost them.  I’ve made a lot of money, and lost it.  I’ve had bosom friends, and intense relationships, and wonderful marriages–all gone.

I hated being a child.  Children were so…stupid.  Like cattle, running in herds, living their happy little lives, sniveling at trifles, reading Dick and Jane.  Innocent, docile, boring little things.  I refused to associate with them.

I had one friend, and one friend only: Terry Martin, whose father was a carpenter and let Terry use all his hand tools.  There was a creek in the woods behind my house, and Terry and I built bridges over the creek using scrap two-by-fours salvaged from Terry’s father’s scrap pile. We would design a bridge, build it, tear it down, design another one and build it, ad infinitum.  I imagine Terry must have grown up to be a famous architect.  We were seven, eight, nine, in our bridge-building years.

The rest of my childhood was consumed with books.  Grown-up books, not kid books; although I did love Charlotte’s Web and anything else by E. B. White, who is still my literary hero. And of course animals–horses in particular, and any other non-human creature.  I used to take in injured animals, wild bunnies who had been half mangled by the cat, a mouse rescued from the trap, and nurse them back to health.  It was my introduction to healing.

But I suffered terribly from depression–of course it was not known, in the 1950’s and 60’s, that children could be depressed.  But I had frequent bouts of overwhelming sadness and a sense of confusion, not knowing where I was in space or time, dissociation I would call it now.  I would cry for hours over seemingly nothing.  I hated my existence and wanted to be gone.

And then there were episodes of ecstatic heroic fantasy.  Like the time I tied the sleeves of my coat around my neck for a cape, and ran full throttle around the schoolyard shouting that I was going to save the world (it was the Cold War then, and the world needed saving). And the time I lost Terry Martin, by planning out and executing my fantasy of winning his nine-year-old heart to be my forever lover, by singing him a love song I had learned from the radio.  That heralded the end of our bridge-building days, and plunged me into a deep river of remorse.

High school.  Oh dear.  I suppose most high school girls spend their after-school hours writing poetry and drawing diagrams of what would later be called “wave-particle theory.”  It was the 60’s, it was Flower Power, it was Viet Nam, it was smoking pot, it was losing my virginity to a vicious rape and running away from home, all the way from Massachusetts to California. It was wandering, purposeless, homeless, sometimes adventure and sometimes just doing what was necessary to keep alive.

Young adulthood–three different art colleges, no degree, frequent bouts of dissociation, PTSD from the now many rapes and close shaves with abduction and what was then called “White Slavery,” now known as Sex Trafficking.  Paralyzing depressions, then marathon painting sessions, up all night listening to WGBH Boston and working on three or four canvasses at once–hanging them on the otherwise bare walls of my bedroom and moving from one to the other until 3 am when the fishermen’s coffee shop (Mike’s) opened and I could go down the hill for espresso and listen to the hushed conversation of the Gloucester fishermen, getting their coffees and Italian pastries to warm their bellies before heading out on their boats for the day.

And then it was back up the hill for me, to get ready to hitchhike to art school, take my chances with whatever creep pulled over to pick me up–would he be manageable or would I have a fight on my hands first thing in the morning–who knew? Left art school one quarter shy of graduating–I had to go play in my boyfriend’s band.  Granted, it was a good Irish band but couldn’t I have just stuck it out three more months and graduated?  No.

Everything was a blur.  I could not concentrate.  They told me I was good, if I could only get it together–but I couldn’t get it together, because I didn’t know what together was.  So I quit to join the band. We had a good roll with the band, and I was painfully in love.  He told me flat out he wished he could tell me that he loved me, but he didn’t.  I kept on hoping…and lapsing into states where I would go far, far away and no one could reach me, so they just went on and left me to my own devices, and I would wake up crying, feeling lost and abandoned.

Decided I’d better be a doctor, because that’s where my heart was–and is.  Talked my way into University of Chicago without a high school diploma–how did I do that?  I was on a high and nothing could stop me.  I blazed through the interview, charmed the interviewers, and got in.

My parents had had enough of paying for schools, so they refused to help with this one.  So I worked three jobs–from 6 am to 8 am blood rounds as a phlebotomist at the hospital.  Ten to three, classes.  Three to eight, nap and homework.  Nine pm to 2 am, cocktail waitress at a downtown disco.  3 am to 6 am, lab tech.  On nights I didn’t work the disco, I went out Latin dancing with the South American grad student crowd.  And at 9 am I ran three miles with Sunny, the girl I was in love with and didn’t find out she was also bi until after college. Sure I got depressed.  I just thought that was normal, since I’d always felt that way.

Let’s fast forward, because this is a blog post and not a book.  This is the interesting part anyway. After a dual degree in medicine and Medical Anthropology, I went on to a residency in Pediatrics and Adolescent Medicine.  I was a very poor resident, partly because I had begun to have episodes of deep depression triggered by sleep deprivation.  Instead of recognizing that I was having a health problem, the administration punished me for my lethargy and crying spells by assigning me to more and more rigorous rotations–extra stints in the Neonatal Intensive Care Unit, which I loathed, and extra time in the Pediatric Emergency Department in the Gulag, which is what we called the hospital in the northern reaches of Rochester, NY, also fondly known as the Knife-and-Gun Club, since it was situated in the heart of Gang War Territory.

I loved the Gulag, for some reason.  It was rough and tough and you never knew when there was going to be a lockdown because some gangs got in and were shooting it out in the stairwell.  It was my kind of  place. I ended up working nights there and becoming the Acting Director when the previous one quit.  I took the place from being a skunk works with one intern to a fully-staffed professional department.

Then the boss hired an old girlfriend over me.  She had no emergency medicine experience, was a developmental pediatrician.  I put on my cape and went into Superhero mode and wrote letters to every bigwig in the medical school.  I got fired.

I got a better job, developing a brand new pediatric emergency department in another part of the country.  I used what was turning into boundless energy to create a top-notch state-of-the-art facility. But that wasn’t all. I got married, bought a 32 horse boarding stable with 40 acres of land, 20 acres of prime alfalfa that we baled 5 times a year, and an asphalt hauling business.  We had one employee, a stable girl.  Otherwise, we did it all ourselves: my husband, my son, and his son.  And I worked 60 hours a week at the hospital. Not unpredictably, I got irritable and contentious.  I didn’t get partnership.

I quit and got another job.  I quit and got another job. I quit and went into practice for myself, which was heaven on a stick, except that now I was having to go into my private office between patients to cry. Disaster hit.  A church-based organization bought out my hospital, which owned my building, and I was suddenly practice-less.  The blow was too much.  It sent me to the hospital, the first time out of twice. I have never been the same since.

Yes, I did create mini-empires with my bipolar.  I could never have done all that stuff, and I haven’t even told you the rest.  But the price was too high.  I’m totally disabled now.  At sixty, I have little to look forward to. I think now, in these days, when there is so much more consciousness about mental health in general and bipolar in particular, there might be hope for consciously channeling that super-hero energy while somehow mitigating the crushing depressions.  I certainly hope so.

For me, it’s a day late and a dollar short.

Voices of Mental Illness: Breaking the Silence of Stigma

Graham Shiels is the author of The Bipolar Place, and a partner in the stigma-fighting campaign, Faces of Mental Illness.  He is a husband, a mail carrier, lives in Livepool, England, and he is a Voice of Mental Illness.

BSS: How long have you known that you are living with a mental illness?

GS:  For me it’s not a simple, x amount of years, answer. I was first diagnosed with a mental illness when I was 22. That would be 13 years ago. However, I think I have had a mental illness as early as the age of 12 or 13. I remember crying myself to sleep nearly every night for what seemed like a year, but I didn’t know what I was crying about. I wasn’t aware back then I had a mental illness, but I also had the feeling that not everyone felt this way.

BSS:  Can you share with us your diagnosis/diagnoses?
GS: Depression & then later Bipolar Type 2.
BSS: When were you diagnosed with these?

GS:  As already mentioned I was diagnosed with depression 13 years ago. I was diagnosed with bipolar just over 3 years ago.

BSS:  How were they diagnosed?  Did you have any special testing?

GS: I was diagnosed with depression after my girlfriend (now wife) basically suggested I go to see my GP. Not so much, because I wouldn’t go, but more a case of I didn’t know what the hell was going on & I needed the help/push to get me there.

I was diagnosed with Bipolar 10 years later. I saw a psychiatrist for the first time after I had thankfully failed in a suicide attempt. I’d basically decided, that if I was going to live through bouts of depression at least once a year, I’d rather not be here.

I wouldn’t say I had any special testing. I was only diagnosed with bipolar due to my history of depression & then the psychiatrist looking back through my medical details realised I more than likely had been bipolar for a long time.

BSS:  Was your illness diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at?  Do you feel that you do indeed have the correct diagnosis now?

GS: I think I had been misdiagnosed with depression for a long time. Whether I ever suffered from depression or if my depression transformed into bipolar or if I suffer from both is anyones guess. I honestly think most of the diagnosis we have, linked to our brains, will at some point be re-evaluated. Simply because there is still much we need to learn about the brain. I’d be very surprised if when I’m in my fifties I’ll still be classed as having bipolar type 2.

BSS: Have you ever been hospitalized due to your illness?  How many times?  Do you think it helped?

GS: I’ve only been hospitalised when I took an overdose, but that was your standard A&E department.

BSS:  Are you on medications for your illness?  Do they help?  What about side effects?

GS: I take Sodium Valproate (mood stabiliser) & Fluoxetine (anti depressant). Yes I think they do help, but I’m a big believer in balancing it with healthy eating, drinking & exercise. I don’t suffer badly with side affects thankfully. Fluoxetine does make me sweat a little more than average, but nothing so it’s overly noticeable. Sodium Valporate can cause diarrhoea, but again I’ve not really suffered from it.

BSS: Have you ever had ECT (Electroconvulsive therapy)?  How did it affect you?  Did it help?
GS: I’ve never had ECT & until much more is understood about the brain I would refuse it. I truly believe to use ECT in a time, where there is so much we don’t know about the how the brain works, is akin to the blind leading the blind.
BSS:  What other things do you do to help with your illness?  Do you go to individual therapy?  Group? Other things?  What, if anything, seems to help?

GS: Currently, I’m working as a postman which enables me to walk & cycle on average 4 hours a day. For me, exercise is just as important, if not more so, than the medication used for treating bipolar type 2. I’ve only been a postman for less than a year. Before this I’ve mainly worked in an office environment. The lack of exercise in an office job, meant I needed to try & exercise in a gym or by running & cycling outdoors. One of the problems with this is finding the motivation to do the exercise outside of work, when all I wanted to do was relax & enjoy my ‘down time’.

Since I’ve been diagnosed with bipolar I’ve reduced the amount of alcohol I drink. I’ve cut out drinking during the week & only drink at most, one bottle of wine when I do allow myself  a tipple. Alcohol is a natural depressant & so as I suffer more from the depressive side of bipolar it seems like common sense to monitor my alcohol intake. If I’m going through an episode of hyperness or depression I cut out alcohol altogether.

One tool I’ve learned,  which surprised me how useful I found it, is my Alternative Journal. It is a CBT tool that helps change how you think about the things you see on a daily basis. I was talking to a counsellor about how, sometimes, when I’m depressed, I struggle to see the positives that are there all around me. He suggested that I begin to log the things that make me happy in a day. Whether it be a stranger smiling at you, a kind gesture or something that made you smile. So it works like this: Grade yourself out of 10, then write down as many positive things that have happened (aim for ten positives). Read through what you’ve written & then regrade yourself. Hopefully you will feel a little more positive. However, I only really felt the full impact of this exercise after doing it for six to eight months. I now automatically  see the positives around me & pause to appreciate them.

Over the last 13 years I’ve seen many counsellors. In general they’ve been very helpful, but I can’t stress enough to be careful that you’re in the right frame of mind for counselling. It’s easy to go to counselling with the aim of helping yourself, but sometimes you just need to let yourself be. After all, picking at a wound isn’t the best way to heal it.

BSS:  How has your illness impacted your life (jobs, education, relationships, children, alcohol, drug abuse….._)

GS: I honestly believe the number of redundancies I’ve had (3), have been as a result of my illness. Of course other reasons have been given. Don’t get me wrong, I understand if you’re off work a lot because of an illness, at some point a business may need to cut back. I simply find it annoying that a company won’t just come out & be honest, giving the real reason. Or heaven forbid they actually allow a form of flexible working allowing me to continue in my job.

My education was certainly affected, both in school & university. I had no idea what was wrong in school & ended up leaving two years early, to escape the bullying & isolation I felt. At university I distracted myself with clubs, drinking & trying to have fun. This worked to varying degrees, suffice to say I enjoyed my time at uni, my grades did not 🙂

Relationships have been fine for me.  I’m lucky I have a great wife who has been with me for 14 years. My family is, well, complicated, but those I care about have been great.

I’ve never had problems with addictions to drugs. That’s not to say I haven’t dabbled in the lesser recreational stuff…but errrr… we’ll leave that there 😉

BSS:  Have you ever felt discriminated against because of your illness, or had to deal with disparaging comments, denied a job or other opportunities?

GS: Other than losing jobs, I feel were linked to my illness, I can’t say I’ve had any problems. Mainly because, only until recently, I’ve been open about having bipolar. I’m sure if I was open about my illness from day 1 I would have come across some discrimination. Currently I wouldn’t let anyone get away with disparaging comments, as I feel much more confident as a person & would be only too happy to point out the error of their ways 🙂

BSS:  If you could give advice to someone else struggling with mental illness, what would it be?

GS: Don’t struggle in silence. Be open with those you trust. If people would rather not be around you after you open up to them, as hard as that is, are they worth your friendship?

BSS: Anything else you’d like to add?

GS:  Don’t give up. The down cycles of mental illness, truly horrible as they can be, are temporary. You can get through them & enjoy your life. That may sound cliched, but I’ve found from my own experience, it to be true.

You can find Graham at his blog, The Bipolar Place, as well as at the helm of the Faces of Mental Illness project, currently found on Youtube, Facebook, and Twitter.

Good News and Bad News

First of all I gotta say that I am really proud of Rhonda Elkins for her bravery in allowing me to post the letter that she wrote shortly after her 23 year old daughter’s suicide, on my Wednesday feature “Breaking the Silence of Stigma.”  That letter touched a lot of hearts and did a lot of good.  And I’m proud of my readers for rallying around Rhonda with their words of support, and some frank and open discussion of their own struggles with suicidal thoughts.

And I’m really proud of ME for writing a great review for David Henry Sterry’s new book, Mort Morte.  He’s honored me by using my review as the copy on his web page.  Kinda makes me think about going back to copy writing.  I wrote copy for an online store for a while, then ditched it because they started carrying shit  stuff I didn’t like, so there went my low-paying writing job. I can’t write copy for stuff I can’t get excited about.  Like “Wow, look at these tacky rhinestone-studded chartreuse earrings in the shape of a bunch of bananas.  Carmen Miranda would have put them on her head!  Only $1,200 on sale now!”  Ugh.  Now if someone would pay me to write fun stuff I’d be on it like white on rice.

That’s the good news.

And here’s the windup, now the pitch….oh come on, just get it out.  Er, I mean over with.  Well, I really don’t want to.  I want to stay sunk in denial forever.

I had to go see my shrink yesterday to get a form filled out so that I can take Noga, my service dog, on the plane when I go to Israel twelve days from now.  Eek.  Time is running short, and it’s running like hell.  Anyway.  So I go and see Tony my shrink, and he’s a good egg.  The man really loves crazy people.  He’s crazy himself, freely admits it, and also admits that the reason he’s a good shrink is that he’s crazy.

Anyway.  So he likes to talk for a long time, both because he likes the company of other crazy people, and because that’s how he sizes you up and figures out what brand of crazy you are and if you need your meds tweaked or anything else like that.  So we’re talking and he’s really paying attention to me and not just goofing around like he normally does.  So at some point I lose not just a single word, as has been happening a lot lately, but an entire phrase that I needed to have, in order to express what I was trying to, well, express.  I wanted to describe something but lacked a whole phrase and was trying to find alternative ways of saying it.

“How often is this happening to you?”

“Oh, several times a day.  Even when I’m writing, sometimes I can’t think of a word and just have to put a parenthesis and go back and fill it in later when I remember the word.”

He raises an eyebrow.  Not a good sign.  Tony is almost always upbeat and goofing around, because if he can’t make you laugh then he knows you’re really depressed.  Or if he annoys the shit out of you then he knows you’re irritable and wants to know what’s up with that.  But if he raises an eyebrow….that ain’t good.

“You know the meds that they’re using to preserve cognitive function in Alzheimer’s?  They’re using them now to treat cognitive dysfunction in Bipolar.”

My heart fell out and hit me on the toe.  I winced.

Last year I felt like my brain was misbehaving, so I had a battery of neuropsychiatric testing that showed a big hole in one part of my central information processing.  I freaked on out and called Tony, who talked me down from my freakout and told me it was a known phenomenon in Bipolar, the older you get.  Great.

So yesterday he gently suggested that since the cognitive issues (he did not say “dementia,” thank God) seem to be progressing, he recommended I try one of these cognitive function preserving drugs.  Far fucking out.

And he also suggested that I go back on the stimulants that I hate and had previously refused to take because they make me feel like shit.  He looked up what I had before and it was Adderal.  He said that sometimes people who hate Adderal like plain ol’ Dexadrine.  He said it might give my brain some clarity and help the cognition to cognate.  So I said all right, and now I have two fucking more pill bottles in my pharmacy.  Why me, Lord, why me?  Oh stop with that whiny shit, Laura, you know very well there are much worse things in the world than being crazy.  Don’t even go there.