There's No Comfort in the Waiting Room

Several weeks ago my wife was taken to hospital by an ambulance. She called me in advance, and I told her that I would meet her at the ER. This has happened a few times this year, but every time seems just as stressful as the last.

When my wife is suffering, I want to be with her and see her with my own eyes and hear her with my own ears. I don’t want to be told second or third hand what is happening. I don’t trust anyone until I have confirmation for myself that she is safe.

I arrived at the waiting room and waited in line. The clerk at the admitting desk had not heard of Teresa. I was pretty sure she was there – either that, or the ambulance was the kind that had to be pedalled.

I used the courtesy phone to call the central switchboard. They confirmed that Teresa had indeed been admitted, and was in Emergency.

She was so close – somewhere behind the secure glass doors. It was frustrating.

I asked a young lady who was volunteering if she could help. She headed off to find out where Teresa was.

I sat, staring at my shoes – eerily like the Death Cab for Cutie song “What Sarah Said.” The TV was entertaining itself, and nobody was looking up except when a nurse walked in announcing a name.

I became consumed with worries and “what ifs.” Finally, the volunteer returned – no, she couldn’t find anyone named Teresa.

I looked down the hall and saw two women come out of the Social Workers offices. One wore high heels, the other sneakers. I walked up and interrupted, asking to speak to the sneakered one (see my earlier post “Getting Support from Child Protective Services” for the reasons why).

I told her my problem. She smiled, and said “I’ll talk to the nurses and we’ll find her for you.”

In five minutes she was back with a nurse. They took me through the glass doors to where Teresa was, about twenty meters from where I had been sitting the whole time. The whole process had taken about forty minutes.

I saw many other worried and frustrated people arrive – knowing that a loved one had been brought in by ambulance, but not knowing where they were. The quiet anxiety in the waiting room is palpable.

If part of a hospital’s mission is to alleviate suffering, they could do a lot of work in the waiting room. A good start would be making a social worker available to help reduce the anxiety and suffering.

Just as long as it’s one who wears comfortable shoes.

Flashlights

For a mentally ill person, the right amount of sleep is critical. Having a regular bedtime and wake-up time, getting between 7-9 hours a night, and enjoying a sound sleep are all conducive to good mental health.

My worst periods of illness have come with severe sleep disturbances, where I get very little sleep followed by a crash into depression. But in some cases lack of sleep is used as a therapeutic device. According to one of my psychiatrists, patients that are not responding to an antidepressant may do better if deprived of sleep for one night.

Anyhow, the whole point of this is that generally sleep is good. I think we can all agree on that.

What I dislike about every psych ward is how hard it is to get a good sleep. First off, your door is never fully closed – so you hear everything that is happening (and stuff happens all night). There is light from the hallway. You usually have a roommate with some sort of apnea or snoring problem (that was me, actually. Apologies to all of my former roommates).

But the biggest disruptor is that every hour or so one of the nurses checks on you. With a flashlight. Aimed at your face.

I don’t know what they expect to see. I would have loved to have had a scary mask to slip on after I went to bed. The nurses can see perfectly well enough to know that there is a person there, and that they are breathing. So why the light to the face?

Even cheap digital video cameras have infra-red night vision, now. Why not use one of those if you really want to see my face while I’m sleeping?

Disrupted sleep combined with disturbing food. Both things, I think, could be improved. If you had to live at a hospital, it would make you crazy.

Which is kind of ironic when you think about it.

Sleeping Pills

This post isn’t what you think it is.

I did try to take pills, once, but this is about a time when pills were forced on me.

I was generally very compliant in hospital, but one thing you learn quickly as a patient is to always check your medication. Your nurse will hand it to you in a little paper cup (like the kind you use to get your ration of ketchup at fast food places. I think ketchup costs them a lot more than the kind I buy. At least they’ve stopped handing it out in the tiny packages that hold a quarter teaspoon).

Anyhow, you get this little paper cup and the first thing you do is count the pills and look at the colours and shapes of them. You learn, for example, that a milligram of Clonazepam is tiny and reddish orange, while the half milligram is large, chalky and orange with a breaking line. Five milligrams of Loxapine is a lime green tablet with a breaking line. Lithium comes in a caplet – the ones with red are 100 milligrams, the half pink, half white ones are 300mg. And so on. You toss them back, and then the nurse makes you open your mouth to see if you swallowed everything.

One evening I spotted a tiny green tablet, only about two millimetres in diameter, hiding at the bottom of my cup. I hadn’t seen one of those before.

I stopped.

“What’s that? I’ve never taken this one before.”

The nurse picked up my chart (charts are gigantic binders, full of all sorts of notes, doctor’s orders, test results, etc. They don’t hang them on the end of your bed).

“It’s a sleeping pill,” she replied after a moment. “Your doctor ordered it this morning.”

“He never told me about it. He didn’t even ask how I was sleeping. I’m sleeping fine – you know that I am. I don’t want to take it.”

She looked concerned.

“Well, for some reason he decided you need it. Can you please just take it tonight?”

I held my ground. I never want to take medication that I don’t need.

“I’m sorry, Jodi, but I don’t need it and I won’t take a medication unless my doctor has talked to me about it.”

She frowned. “So, you’re refusing a medication the doctor ordered?”

“Yep,” I replied, folding my arms.

She was good. Instead of making a fuss, she made me do some paperwork.

I had to sign forms waiving the hospital and nursing staff of liability, and indicating that I was wilfully ignoring a doctor’s orders.

The next morning I saw my psychiatrist. “Why did you order sleeping medication for me?” I queried. I was a little upset.

“I just assumed you needed help sleeping, after all of the stress you’ve been through, especially going through seclusion.”

“Thanks anyways, but please don’t make assumptions. I’m sleeping fine.”

(I thought about that old aphorism – “You know what happens when you assume? You’re an idiot.” That’s my version, anyways).

During my stay, I discovered three more medication errors.

If you are ever hospitalized for anything (and I hope you aren’t), always check your own medications.

It’s better to know exactly what’s in that little paper cup than to not.

That’s why I’m so wary of fast-food ketchup.

MI-5

Being mentally ill is like being a member of a super- secret club. Let’s call the club MI for short. Actually, let’s call it MI-5, because I just figured out how to lump all of the types of mental illnesses into five broad, and wildly inaccurate, categories.

The first rule of MI-5 is nobody talks about MI-5.

The second rule of MI-5 is nobody talks about MI-5.

It’s great. You never have to talk about this club, because nobody outside of the club really wants to, and it’s so hard to tell who’s a member.

There are tells, though. I get tremors (but people might think that’s caffeine); I shun alcohol (but people might just think that I’m a teetotaller); and I take lots of strange drugs (because I live in East Vancouver, I hardly stand out).

As a member of MI-5 you enjoy privileges like:
 
-        Extended holidays in secret locations!
-        Membership in MI-5 groups with free coffee!
-        Free (in Canada) quarterly ECG and blood tests!
-        Lots of free (in Canada) doctor visits!
-        Brushes with death!

Because we are too busy fighting evil, members of MI-5 often cannot keep a job.

As a member, I myself have had to take two demotions after winning promotions, because of the time and energy that MI-5 requires. Right now I have given up my income to live on employment insurance because of my MI-5 mission. I miss work terribly, but it’s a sacrifice I have to make.

The missions often seem impossible. Some people don’t make it, but most do. Many require a cover when they return, like “I went to Vegas,” when really they were fighting for freedom at home.

Once you are a member of MI-5, you will be for life. There is no way to leave the organization. Many are trying to retire, and perhaps one day there will be a way to get out, but not yet.

MI-5 gives you missions that you cannot help but choose to accept.

We all try to make sure that they do not self-destruct.

The Waiting Room

I’ve spent too much time in hospital waiting rooms.

You would think it would be a place where you see raw emotion – people sad, angry, depressed; with violent confrontations, yelling and crying.

Instead, it is a relatively quiet space of seething, repressed feelings. Everyone is trying so hard to hold intense emotions inside that they leak through the cracks. People look at their shoes, afraid to make eye contact and either reveal, or see, something disturbing.

There is a television that plays, but nobody watches it. To do so would be to share an experience with anyone else who chooses to watch. Safer to just look at the floor, or quietly talk with the other one or two people who might have come in with you.

The people who are vocal are the mildly injured, waiting their turn for a gap in the crises behind the locked, sliding doors, so that they can get some stitches or a cast or their cough checked. They tend to moan in pain, or complain about the wait to the volunteers, who nod politely – or their neighbours, who move away and ignore them.

And, of course, there are always the vending machines. The wait can be hours, and god knows you will need sustenance – even if it’s in the form of a chocolate bar and a soda.

Psych patients are generally a priority, especially if you arrive alone or by ambulance. Hospitals want to get you to a secure place, where you can be evaluated to determine if you are a threat to yourself or others. They don’t want you freaking out in the waiting room. So you are treated like, say, a person with a head injury or a compound fracture.

However, if someone you know has brought you in, the triage nurse may make a “contract” with you. It goes like this – “Can you contract with me that you will not try to run away or harm yourself?” If you say yes, then you will be left with your companion, who is now charged with making sure you don’t escape.

Then, you wait. Even after you are admitted past the locked, sliding doors, you wait, sometimes hours before you see a doctor.

When you’re a patient, patience is what it’s all about.

Volunteering

Right now, behind a locked door in my home while my kids are asleep, I am volunteering in secret.

A patient at my wife’s hospital is unable to afford cigarettes, and cannot roll her own. So, I am making smokes. It’s like a craft – I’ve gotten really good at it (I love crafts!). I can make one in under a minute, now, so in a day or two she will have lots. (Please note that I am making them on top of a fitness magazine. I like the irony).

 

It seems counter-intuitive, but when you’re dealing with a very serious, chronic illness I think it is cruel to simultaneously have a person try to quit smoking. One thing at a time is enough.

This brings me to another story about volunteers, doing good work like me.

When I arrived at hospital, my nurse Dave got me settled (after I rattled him with ideas about how I could commit suicide in my room). When he left, there was a knock at my partially ajar door. I opened it to a smartly dressed, older woman.

“Good afternoon. I’m Mary. I come most days to volunteer on the ward. I would be pleased to show you around and explain the rules.”

I padded out after her in my hospital slippers and scrubs. For the next half hour, Mary showed me about, and explained dos and don’ts. She seemed to know everyone and everything.

I thanked her profusely. She told me that she would be back again the next day, if her schedule wasn’t too full, and to feel free to ask her any questions I might have. Then she left to tidy up the TV room.

I saw her the next morning at breakfast. I was surprised she was there so early.

After breakfast, I saw her get medication, like everyone else.

A light bulb went on.

Mary may have been deluded, but what she did was actually very helpful.

I am still grateful that she was there, doing her “volunteer” work for all of us new patients.

The Smell

I was one of the only patients who had to share a room. I think it was because the nurses knew that I wasn’t prone to violence, and that I was generally tolerant.

So I was put in a room, divided by a curtain, with a great guy named Ron. One of Ron’s apparent problems was agoraphobia. He wouldn’t leave the room. The only time I ever saw him go out the door was to furtively sneak across the hall to use the bathroom. He looked like a WWI infantryman, going over the top from one trench to the next.

He absolutely refused to leave for any other reason. He was paranoid, too, and begged me to keep a lookout for suspicious people who might be coming to get us.

For a week or two it was nice to have someone to talk with. Ron had been admitted just a few days before me. Nurses would bring him his food and his meds.

Then things went off the rails. Ron was a smoker, and had been put on the patch. He kept asking me to find smokes for him. I told him I couldn’t – I didn’t even have clothing privileges. Finally, a visiting friend brought him a pack.

Ron snuck into the bathroom and lit up.

A nurse smelled it, and dragged him back to his room. She made him cough up the pack, and told him they would no longer bring him his meals – he would have to start leaving the room to pick them up.

This made my life hell. Ron would pester me to get his meals, until finally I would give up and sneak out to get them for him. This resulted in me getting reprimanded by the nurses. I felt stuck – it was either listen to Ron whine for an hour, or risk getting in trouble. I tried telling him to shut up – but he wouldn’t stop. He had nothing to lose.

Then he started to smell. Badly. By this time he had not showered in two or three weeks. The B.O. became overwhelming – even with my window open I was nauseous.

I asked for and received a menthol cream. Every night I would put some in my nostrils so I could fall asleep to the smell of mint.

Even though I asked for a transfer to another room, I never got one. Ron was a great guy, but by the time I was discharged he was still there – stuck in his room with his body smell. I felt bad, because he was good company. I also felt bad for whoever was going to replace me.

The lesson I learned? I never want to live with cavemen. That childhood dream has died.

The Telephone

I hope that I didn’t offend any nurses with the photo that went along with my last post. I am a librarian, and I LOVE finding bizarre book covers. Romances are good fodder for that!

Every psych ward has a single phone for patients to use. It used to be that they were pay phones, so you had to have lots of quarters. Many patients couldn’t afford to use the phone, so I would keep rolls of quarters my wife brought from home. I felt like a drug dealer, as patient after patient came to my room looking for a quarter.

Today the phones are usually free, but always have two things in common:

-        They are always in a very public space, usually by the nurses’ station, so that everyone can hear you.

-        There is always something wrong with the cord, so that you have to position it just right to hear the person you are calling without being drowned out by crackles and periods of silence. (Many patients are not gentle with the receiver, especially when receiving bad news).

Loved ones call the nursing station only when asking for an update on your condition. To talk with you directly, they have to call on the shitty, patient phone.

Why not cell phones? Why not multiple private phones? One of the big worries is that manic patients will wreck relationships. They will call employers (if they are lucky enough, like me, to have a job); they will call friends; they will call family; and what they tell them will be offensive or absolutely crazy.

Today, smart phones, tablets and laptops are sometimes allowed, but are kept locked and given out for short periods of time only if you are stable enough.

I was lucky that my family and friends would call to check on me. I wasn’t shy about letting people know where I was. I felt bad, because I was constantly getting knocks on my door to let me know I had a call. The nurses never answered the phone – it was always another patient walking past. Often it would be someone who had never received a call themselves.

That crackly, crappy phone became a lifeline for me – my only contact, besides visitors, with the outside world. I learned how to hold the cord just right so that I could talk and listen without too much disruption.

And when a call made me sad one or two of my buddies would invariably be walking by and invite me to join them.

Together, we would do our lengths up and down the hall until the sadness was shared, and became tolerable to bear.

Nurses

I haven’t said enough in this blog about the admiration I have for nurses in general, and psychiatric nurses in particular. The job is demanding – not only are psych nurses monitoring physical well-being and medications, but they are also counselors and therapists. They are the most important factor in how quickly you recover in hospital.

There were the occasional bad apples, but they were few and far between (the two that didn’t believe I had tardive dyskinesia (see my earlier post “When I Lost Control of my Tongue”) were rarities).

My favourite nurses would spend time chatting, and giving helpful advice on how to change thought patterns. They would provide comfort and therapy; dispense emergency medications; and generally make sure that I was safe. They would also advocate for me with the psychiatrists. Psychiatrists might spend ten minutes a day with their patients – nurses would spend hours.

A few nurses really stand out for me. Dave (he’s the one I gave a hard time, and then turned out to be so fantastic that I felt bad); Julie, who really pushed me to be active every day; and Diane, one of the head nurses, who saved me from tardive dyskinesia and always believed me when others wouldn’t.

Often when you come to an ER after attempting to take your own life, you are treated poorly by some of the staff. After all, you are the antithesis of their profession. They are trying to save lives, and you are trying to take one.

My brother drove me to an ER after I had made an aborted attempt. I waited with him, watching the triage nurse. She was disdainful and gruff – especially at people with coughs and colds, or minor injuries. Her attitude was “don’t bother me with this stuff.”

When it came to my turn, I walked up to her desk.

“Why are you here?” she barked, looking me up and down and not seeing any obvious injury.

“I just tried to kill myself,” I whispered.

“What did you say? Speak up!”

I started shaking, and choking up. “I just tried to kill myself.”

Her eyes went soft. She put her hands on mine and whispered, “You poor dear. I’m taking you right in. We’ll look after you now. I’ll make sure that you’re okay.”

I’ll never forget her.

Sometimes there are moments in your life – emotional fulcrums – that allow everything to be lifted up and flipped over.

That nurse’s unexpected, compassionate response was such a fulcrum.

 Like magic or a gift just opened, I had some sort of stability that I had been lacking.

 

I spent the night in emergency under observation (by nurses), and was able to be discharged the next day.

So, this is a big thank-you to nurses everywhere. Your job is hard, and you are underappreciated, but the impact you have on patients is tremendous. Thanks for helping to put my life back together.

 

 

 

My Son

Being mentally ill took an enormous toll on my family. For my wife, there had been no indication that anything was wrong until an unexpected call from the hospital changed everything.

One of the hardest things for me to picture is my seven year old son wondering why Dad didn’t come home. When he was finally able to come to the hospital for a visit, his eyes were big and he was scared. But he gave me a huge hug, and each time after I would give him a dessert I had saved from my food tray.

My wife expressed dismay.

“Why are you doing this? I feel like you’ve left me.”

When you aren’t used to being around someone who is mentally ill, it feels like they are pretending. We take for granted that people can control their thoughts and actions. When one cannot, it always appears like acting.

Our marriage did not last much longer after I was discharged from hospital. It is hard to live with someone who is as sick as I was.

 For the first couple of months of separation, I stayed with my brother and his wife. My son came to visit on weekends.

Then I found a place of my own – a small basement suite with two mattresses on the floor, and my son’s mother and I split custody - so one week my son would stay with me, the other with his mom.

It is so hard to cope after being released back into the world. I was adjusting to medications that made me fuzzy and tired, returning to work, and seeing a psychiatrist, doctor and therapist. There is only so much you can handle.

I had to put my son in childcare. I would drop him off early in the morning before school, and pick him up just before dinner time. This gave me enough time to work a full day and get to my appointments.

But by dinner I was exhausted. The medications were hard on my body. I didn’t have much money or energy to cook, so often we would eat at McDonald’s (it was the suburbs - it was nearby). When the money ran out we had pancakes for dinner. I would be in bed by eight – same time as my kid. I needed ten or eleven hours of sleep to recover for the next morning.

Things slowly got better, but it took a while. We traveled from basement suite to basement suite. Eventually we moved into a housing co-op in the city that was close to my job, and my son began living with me full-time.

Shortly after, I met a beautiful woman with two amazing preschoolers. We got married six years ago – my son was my best man.

He moved out last week. He is an adult, now. I am so proud of who he has become. He will always be my best man.

Funny thing, though – he hates McDonald’s, hospitals and pancakes. I don’t blame him.

Going Nowhere

Mike had long hair, ripped jeans, was several years younger than me but looked like he had lived in the 70's. He was easygoing, and loved to play guitar.

There was an old guitar on the ward, but it only had two strings. Mike would sing (he had a good voice), and play the tune on two strings as best he could. He obviously had talent.

"Man," he said at dinner, "I wish they'd let me have my axe. Or at least send that piece of shit out to be restrung."

Now, I know how to string a guitar. I would play one while doing children's programs at the library. I did so many, I had to restring my "axe" up to four times a year.

I spoke to the nurses. They told me to talk to the Occupational Therapist, because music therapy was her field.

I took a deep breath, calmed myself, and spoke with her.

"I could restring that guitar. I think it would be helpful for some of us musicians to have an instrument."

"Why, that would be lovely! Tell me what you need."

I told her the type of strings to buy, and what kind of pliers and cutters I would require. She frowned at that, but I could see that she had decided I was not a high risk of using the cutters and pliers for mischief.

"I'll get you the things you need tomorrow."

Tomorrow came, and she came through - sort of. She provided pliers, cutters, and...the wrong kind of strings. They had the wrong end, and wouldn't fit.

I'm good at making things work. About an hour later I had rigged the guitar up and tuned it so it was playable. I handed it to Mike.

"Right on, man!" He started to play right away. It sounded good.

Day by day, he seemed to improve. It was great hearing the guitar Then one morning, he came to breakfast excited.

"I heard the nurses talking. Holy shit - I think I get to go home! It's damn well about time - I've been here for six weeks." Everyone around the table gave him a high five.

A half hour later, we saw him being escorted through the elevator with two nurses and his belongings. I was surprised he hadn't said goodbye. I glanced down at the sign out sheet.

Under where it said "Name" I saw "Mike." Under where it said "Destination" I saw an angry scrawl that said "Fucking Nowhere."

"Where's Mike gone?" I asked the nurse.

"Riverview," she sighed. "He hasn't improved enough, and we need the bed."

Riverview is the long-term psychiatric hospital in British Columbia (despite what you may have heard, it is still open - just downsized). Compared to an average hospitalization of two to three weeks, patients in Riverview stay an average of a year and a half.

I couldn't remember how long I had been on the ward, but it felt like it had been a long time. I felt bad for Mike, and then a deep panick set in - was I getting better fast enough?

I didn't want to go "fucking nowhere."

My Name Tag

In hospital, I looked for means of gaining some control when things became frustrating.

Remember the Occupational Therapist I wrote about? The one who made us play basketball in slow motion, and suggested we hire maids to help with housework at home? She showed us a weight room.

Again, I was surprised and excited. I like to work out. I had no idea that there was a gym in the building. It looked pristine - with a universal machine and a bunch of free weights.

"When can I come up and use this?"

"Oh, not until you are very stable. We wouldn't want you hurting yourself, would we? Plus, you would be out of practice. So, you couldn't use most of this anytime soon."

I began to understand why the equipment looked so new.

"So...I would have to be well, and have to practice lifting weights, before I could use this?"

"That's correct. Let's move along now, shall we?"

I felt a growing resentment towards this woman (for the record, I have met many wonderful OTs since. She was an exception). It had been a month, and I had played one game of slow-motion basketball. That was it. And to use the weight room I would have to be discharged from hospital, which would mean I couldn't use the weight room.

When I finished the little tour, I came back to my room and took out the name tag on my door. I tore it up, and found a piece of cardboard. With child safety scissors I cut it into a square that would take the place of my tag. With a coloured felt pen and great flourish I wrote "Piscator", and placed the card in my name slot.

I love to fish. Fishing requires incredible patience. My favourite is fly fishing. You must remain silent and attentive - focused on your line so that you don't miss that small twitch that tells you a fish is on. I also gently release most of the fish I catch. With fly fishing, the fish don't swallow the hook - with skill, you catch them in the lip so that they are not injured (most fly fishers like me use small, barbless hooks).

I decided to apply the same techniques to my hospitalization. Patience, focus and observation.

The nurses looked at my nametag quizzically. None of them asked me what it meant. I saw them make notes.

In the original edition of Izaak Walton's "The Compleat Angler," Piscator is the angler who has discourse with Venator, the hunter. Each of them politely argue the virtues of their respective sports.

Piscator is the patient one.

I decided that for the rest of my stay, since I was known as a "patient," then I would be "patient." In spite of anything that happened, I would be both the fisher and fish - focused and waiting - my goal to be released unharmed at the first opportunity.

The Probing Psychologist

Don't worry, he wasn't an alien.

At the time I was hospitalized, it was standard practice (I think) to have two things done: a CAT scan (I don't think they do these any more because of the increased risk of brain cancer); and a visit with a psychologist. The CAT scan was to make sure that I didn't have anything physically wrong with my brain. It showed that I indeed had a brain.

I think the difference between a psychiatrist and a hospital psychologist is this:

- A psychiatrist works with your brain chemistry, using chemicals and exposure to different stimuli (like light and electricity), to change the way your brain works.

- A hospital psychologist uses verbal and written diagnostic tests to determine to what extent your disease is caused by past experience.

My meeting with the psychologist started with me filling in forms with those little ovals you have to draw on with pencil. You can't use X's, or check marks, or O's; you have to fill in the little ovals exactly within the lines. This is hard to do when you have tremors from psych meds, so I was proud of my not-too-messy result. It was the same kind of pride I had in grade one when I got a perfect mark for colouring in my clown without going beyond the borders. (I hate clowns, but I wanted a good grade).

The Psychologist fed the sheets into a machine. Then he got a print-out. He looked at it, clearing his throat.

"It seems that you have behaviours that make it appear that you need to be rescued."

"Really? What kinds of behaviours?" I asked, genuinely worried. Was I talking about things that made me seem like I needed sympathy? Did I have a predisposition to be needy?

"You bang your head. And, you attempted to kill yourself. Do you enjoy being rescued?"

"I'm relieved to be rescued," I said. "I don't want to hurt myself."

"Interesting..." he said. He made some more notes.

And he made some more.

And some more.

"Excuse me," I interrupted. "Are you diagnosing me? If you are, I would be interested in knowing what you think."

"I think that you may not be entirely truthful about this voice you hear. It would be very rare. But if you are being truthful, then you would have a depression-induced psychosis."

That concluded the session. I felt low - "lower than a rattlesnake's belly in a wagon rut" the cowboys would say where I grew up. It hurt to be accused of lying.

You know what? Despite all of the note-taking, psychiatrist visits, and the visit with the psychologist, they all got it wrong. I find that interesting, and would love to meet them all again to let them know.

Sometimes, even with page after page of diagnostic tests and interview after interview with psychiatrists, nobody asks the right questions.

Not once, to my recollection, was I ever asked if I had experienced symptoms of hypomania.

Not once, to my recollection, was I ever asked what happened after I was prescribed an SSRI three months previously.

Those two questions may have been enough to diagnose me as bipolar, and for the doctors to consider that I might be in a dangerous mixed state (where one experiences symptoms of hypomania and depression at the same time). The risk of suicide is extremely hight in a mixed state, and would explain why sometimes I was happy in hospital, sometimes irritable, and sometimes incredibly depressed.

It would have affected my treatment, too. For two years I was on ineffective medications with horrible side effects.

Luckily, today I have a fantastic psychiatrist. Things are improving in the medical system. There is a more standardized way of collecting information, so that it is less likely to misdiagnose a patient.

Even so, where I live the average time from the first doctor visit to a proper diagnosis for a person with bipolar disorder is fifteen years.

I beat the average by three years, but I think that the medical system could do a lot better.

Rain On Our Heads

These are the steps to freedom when you are certified under the Mental Health Act and arrive in hospital.

First, everything is taken from you. The only things you have are your hospital bracelets, hospital pants, and a hospital gown.You may be guarded, or placed in seclusion - a tiny room in which you are locked (see my earlier post on what it's like to be in seclusion).

You don't realize it at the time, but it will be from many days to several weeks before you will be outside again.

First you have to get your clothes back. When you do, this means that the staff trust that you won't try to escape.

After you get your clothes, and depending on your psychiatrist's assessment, you may be given a "fresh air" pass, to go outside of the building for fifteen minutes.

Now, imagine being confined to a room, hallway, eating area and TV lounge for a week, two weeks or a month. Your only exercise is pacing up and down the hall (there's even a sign that tells you how many trips end to end it takes to make a kilometre, like you are swimming lengths).

That fifteen minutes of freedom and first breath of fresh air is exhilirating and terrifying. It is hard to describe what it is like to someone who hasn't been confined.

If this works for several days (i.e. you don't try to escape, and come back on time), then you will be granted longer passes, culminating in ovenights at home and eventually discharge.

What I remember most about my first fifteen minute pass was being nervous, and then the feeling of rain hitting my head. It was delicious. I let it rain on my head for those whole fifteen minutes. It is one of the most vivid memories I have of my hospitalization.

Several years later, I was walking with a friend who had, as it turned out, only two weeks left before cancer would claim her. She was gaunt and very ill. It started to rain, and I immediately opened my umbrella to hold over her head.

"No thanks. I'd like to feel the rain on my head this time."

I folded up the umbrella and we walked quietly together, both enjoying (for different reasons) the special feeling of rain on our heads.

My Hospital Food Theory

You know how everyone complains about how bad hospital food is? My hospital food theory goes like this:

- The average length of a hospital stay is something like three days.

- On a minimal budget, food preparation has to take into account allergies and dietary preferences for hundreds of people.

- Therefore, food preparation is kept as simple as possible, and is not nutritionally optimized because it is cheaper and the patients, on average, will only eat it for a short period of time.

So...this poses a problem for longer term patients. Like those in a psych ward.

I personally had no issue with the food when I was hospitalized. I was hungry all the time, and probably would have eaten kibble if someone had served it to me. I barely ate any of my desserts - I saved those for my seven-year-old son when he came to visit. It was the only special thing I could do for him.

After sampling food at several hospitals, I've noticed some things that make me raise my eyebrows (thank god they grew back). These are the questions I would like someday to ask a hospital administrator:

1. Why do you serve white bread instead of whole wheat?

2. Why is the rice always white?

3. Why are salads made with iceberg lettuce with high calorie dressing, and not a selection of dark, leafy greens with a vinaigrette?

4. Why serve reheated, battered fish sticks instead of plain fish?

5.  Do you know that mashed potatoes, while technically a vegetable, are really a carb?

You know what's funny? While I was hospitalized I met the hospital dietician (when I was trying to convince her that I was not a cardiac patient). I asked her for recommendations for my diet at home when I was discharged. She said (I'm not making this up), "Stay away from starches like white bread, white rice and mashed potatoes - opt for versions with more fibre, like whole wheat bread and brown rice. Stay away from fried and battered foods. Finally, make sure you eat lots of vegetables. An easy way to get variety is to buy a package of the dark greens at the supermaket, and have that as your salad."

If you do (and I hope you don't) have to spend any significant amount of time in a hospital, make sure you have a friend who will "run food" for you. Like drugs and therapy, fresh fruit and vegetables will make a big difference in your recovery.

Whoops - got to go. I've got a bunch of tater-tots cooking in the oven, and the toast has popped.

I'm making a bacon sandwich.



Mmmmmm...dairy product...

Being Supportive

I have observed lots of ways that people support their loved ones in a psychiatric ward. Here are a couple of brief lists of examples. First, the bad support:

1. A mother giving her son a boost so he could escape through a little window high up on the wall (she was strong!). He was caught by police soon after.

2. A parent sneaking in food for her daughter who was being treated for an eating disorder. (She always carried an extra-large purse full of cupcakes and candy).

3. A friend who brings his buddy cigarettes, even though nicotine is not compatible with his medications.

4. Cutting off access to the outside world by not telling anyone that a friend or family member is sick and in hospital.

5. Sneaking in dangerous items, because the patient has convinced them that they are necessary (things like scissors, screwdrivers, razors).

Those are some of the worse examples Here is a small list of examples of great support:

1. My parents and all of my brothers making a trip to Vancouver to surprise me with a birthday cake (yep...I was in hospital for my birthday). They also brought fresh fruit for everyone on the ward to share.

2. Being visited by coworkers and friends.

3. Parents NOT giving in to tearful pleas from their children for unsafe things or help escaping - probably one of the toughest things to do.

4. A trusted friend or family member regularly checking in with the nurses and doctors and advocating to make sure that appropriate care is being given.

5. Giving small gifts after having them checked by the nurses. A coworker, for example, brought me a deck of cards. Another brought me a bag of chips. These little things meant the world to me.

Try to think about how you would act with a patient who wasn't in a psych ward. You wouldn't give them anything dangerous. You wouldn't hide their whereabouts from people they were close to.

Erasing the stigma begins when we start treating mentally ill patients the same as we would treat anyone else in hospital. Sending flowers, popping in for a chat, having everyone from work sign a card - it all helps.

And to my parents and brothers - that was one of the weirdest, but best, birthdays I've ever had.

Thanks.

Paranoia and the PAU

Almost all of the hospitals I've visited have a place adjacent to the Emergency Room called the Psychiatric Assessment Unit (PAU). The PAU generally has many seclusion rooms, and is a place where newly admitted patients can be made stable enough before moving to a regular psychiatric ward. There are usually a couple of security guards, and lots of nurses.

Visitors are allowed in the PAU, but must be buzzed in and checked at the nursing station to ensure that they are not carrying anything harmful.

Many people experiencing a mental health emergency are very paranoid. It is important to respect their needs by not doing anything that aggravates their state.

I visited a friend in a PAU two years ago. I checked in at the nursing station, then went and sat down, confident that as a former patient I knew the ropes.

Turns out I was overconfident (maybe I was hypomanic? I can't remember). Anyhow, I pulled out my phone to check messages while waiting to be allowed to see my friend.

Almost right away a nurse was over, whispering to me "Put that away immediately, please. You may not understand, but many of our patients are paranoid, and that will aggravate them. They think you are taking pictures or recording them."

Having been one of those paranoid patients in the past, I was mortified at this basic error. I was overconfident, and reliving my own experience. I was not being a good guest.

It was humbling, and a good reminder that as a visitor I had an important role to play as a supporter, not as a former patient. Letting go of my past in hospitals was vital - and once I learned that lesson, I was able to listen much better to my friend and to hear his own experiences, without constantly looking at them through the lense of my own.

Why I'm Like Britney Spears

There are three things Britney Spears and I have in common.

1. We both have a mental illness.
2. We both are great dancers.
3. We both did something drastic with our hair.

Okay, so maybe number two is a stretch. Britney is not THAT great of a dancer.

When I was in hospital, I had a hard time believing that people were taking me seriously. I even had a hard time taking myself seriously. When a disease manifests itself in your thinking and feelings, it's hard to trust yourself. Thinking and feeling are supposed to be under your control, right?

So when you are feeling so sick inside, you find ways of showing it on the outside to prove to yourself and the world that you really are sick.

My theory is that this is what happened when Britney Spears shaved her head, in full view of the paparazzi. That was a pivotal moment, where everyone in the media went whoa - she really is crazy.

For me, a shaved head would not do it. Although I had a full head of hair when I was admitted to hospital, it had been shaved before as part of a library event. I didn't want to cut myself, and head banging had only landed me in seclusion. I thought about drawing all over myself with pen, but that seemed soooo grade school. Then I got an idea.

I asked my nurse (it happened to be Dave) for my electric razor. My wife had brought it in for me, and I was allowed it for brief periods of time to shave. I took it to my room, and used the little pop-up beard trimmer to shave off my hair...and my eyebrows. I put all of the clippings into the garbage can (lined with a paper bag), and returned the razor to Dave. He was looking down at some charts.

"Oh, thanks D'Arcy, I'd forgotten about that."

"It's okay, Dave. You took so long to check that I thought about pulling the back off and stealing some parts so I could electrocute myself tonight, but I didn't, so no harm done."

That made him glance up, concerned. That's when he noticed my new look.

"Why did you shave your hair and eyebrows off?"

"Well," I replied, "I figured that since nobody outside is going to see me for a long time anyway, I should try the Charlie Brown look. What do you think?"

"Interesting," he said. He pulled out my chart and made some notes.

As an aside, I do not recommend shaving off your eyebrows. Ladies, I don't know how you cope with such small, plucked ones. I learned that eyebrows are crap catchers - without them, all sorts of crap falls into your eyes. I was glad when they grew back.

I kept my head shaved, though. It was super comfortable, and meant that I no longer had to lather, rinse and repeat. I just buff it once a day. ;)

Nobody Says Hello Afterwards

In a psych ward, you quickly develop strong bonds with your fellow patients. After all, you are there 24/7 - way more than the nurses, cleaning staff, or anyone else. Even though you are trapped, it is your turf - much like a tiger's cage.

All of the pacing was reminiscent of a zoo, too. Up and down the hall, because there is nowhere else to walk. In my ward, they even had a sign on the wall telling you how many lengths equal a kilometer, like we were swimming. Little groups would form, chat,  and dissipate, walking back and forth.

When I got a priviledge, like street clothes or a fresh air break, my friends on the ward would congratulate me with high fives and hugs. When things went badly, I would get visits (usually from the manic patients), to try and cheer me up.

Julia, a 40ish woman who had become a good friend, was being discharged. It was bittersweet - I was happy for her, but would also miss her. I was also jealous that she was being given freedom while I was stuck, not knowing when I would be released.

"Here's my number, Julia. After I'm out, give me a call and we can chat."

Julia gave a wry chuckle.

"Don't bother. You're new at this, but I've been through it a dozen times. Nobody says hello afterwards. We will pass each other in the street, and we won't even make eye contact. It's been great knowing you, but I don't think we will ever speak again unless we end up back here. Take care."

I was dumbfounded.

I was discharged a short while after. I said my goodbyes to everyone on the ward, and exchanged numbers with some. Then I left.

When I came back out into the world, I realized that everything had changed. I had been trapped to be made whole again, and I didn't want to remember anything about time when I was broken.

I met former patients who had been my good buddies only twice after that.

Marie had become a clerk at Zellers. I was there shopping with my wife and son, asked a woman for help, and when she turned around I recognized her. She looked right at my eyes, and recognized me too. There was a brief moment of silent panic, and then it was like we had never known each other. She helped us and we left.

Big Tom, who had watched me do jigsaw puzzles and was my best hospital friend, had been moved into supportive housing near where I lived in the suburbs. I was out with my son when I saw him riding towards me on a bicycle. Again, our eyes met and there was a brief moment of shared panic, then he rode past and neither of us said hello.

It's a cruel regret, needing to leave everything of your hospital experience behind to be well, but losing your friends in the process.

My Unintended Weight-Loss Plan

Since there were no snacks on the ward (see How I Stopped a Stalker for details), the only food I got was what came on my tray three times a day, and a small snack at bedtime  (usually a piece of fruit). These portions I carefully guarded - they weren't much. When I looked around the room, everyone else seemed to have more food, and a greater variety of things. But I was sedated, and didn't feel like complaining.

The nurses weighed me after my first three weeks as part of a general check up. I was pleased to see that I had lost ten pounds. I was getting fit! But they were concerned.

"Are you eating all of your meals?"

"Are you kidding?" I replied. "The food is crap, but I'm hungry all the time."

"We're going to make an appointment with a physician and a dietician to find out what's wrong. This shouldn't be happening, even if you are walking a lot"

"I think I'm just not getting enough food," I said. But procedures had to be followed.

First a doctor gave me a physical, and everything looked fine.

It was many days before I was seen by the dietician.

She showed up with a file. "So, Mr. Stainton, what would you like to see me about today?"

I told her about losing weight, being hungry, and the blandness of the food.

She made some notes, and looked in the file.

"Well according to the doctor, you've been diagnosed with a bit of a heart condition. So this is an appropriate diet; and losing a few pounds through exercise will certainly help."

My mind reeled. I felt dizzy. Suddenly I noticed that my heart DID feel funny. Oh my god.

"Is something wrong?"

"Nobody told me that I had a heart condition," I stammered.

The dietician left the room and went to the nursing station. She returned with a different file.

"I'm sorry. Some files got mixed up. We had you on a strict cardiac diet. We'll give you more and better food now."

After that I ate better, although I wondered if the jolt of that news had given me an actual heart condition.

And I still wonder if there is a cardiac patient out there with the last name Stainton who, for three weeks, ate better than anyobody else on his ward.