Shuffling Feet

I woke up around two last night. I have a great deal of difficulty sleeping here, and that is only made worse by an inconvenient catch-22.  If I choose to sleep with my door closed, the nurses must open it while they do their rounds, every 30 minutes, for safety. The door is not quiet, neither is their card swiping against the keypad to give them entrance.

The other option is to leave the door cracked open enough that they can poke their heads in without having to open the door. This seems ideal, until you realize how every noise in a hospital wing travels down the hallways and can be heard from other rooms. So, I go back and forth on which option I find best.

Generally, I choose open so that I can take the chance of a quiet night, compared to the certainty that the nurses will be doing their rounds. But at times I find myself awake after a difficult time falling asleep, because of some noise.

Last night it was shuffling feet. Slowly, very slowly, I heard the sound of someone shuffling along closer and closer to my door. Eventually an older Italian man appeared and continued shuffling along to the end of the hallway. It seemed like he paused for a long time between steps, and I heard a noise I couldn’t place but sounded something like clothing being rustled.

Having worked with adults with disabilities, I know to expect that anything is possible. I just hoped he hadn’t mistaken the end of my hallway for the bathroom, or that he felt it was an appropriate place to disrobe (I’ve already seen one old naked dude strutting in the hallway, thank you).

After another few minutes, I heard the shuffling feet coming back towards my door and passed again, to continue down the hallway at the same speed he had come. I lay in bed feeling frustrated that I was now awake and wondered whether an activity like reading or music would best suit me, or laying there till I drifted off, or taking sleeping medication.

It’s incredibly important, these decisions, though they may not seem to be. The ways in which one spends his or her time here is critical to progression towards recovery or further illness. I need to space my activities out so that I still have something interesting to do at the end of the day. Otherwise, all the feelings of loneliness, boredom, and homesickness will spark ones of hopelessness and shame, which become bigger problems.

In the end, I decided to ask my nurse for some medication to help me fall back to sleep quickly. As I walked up to nurse’s desk, there was the old Italian man diligently dusting each sign, door knob and hand railing with a few pieces of cloth. He was methodical and thorough in his approach.

I was struck with a sense of amusement at what I had imagined he may have been doing and the reality. Everyone’s got to make their own choices here that will best serve them in recovering from illness, and he chose to dust. Not likely one I will try, but I will certainly try to capture his creativity when it’s 2am, I can’t sleep and I need to find an activity to help me pass the hours.


Toward Peace

A spiritual care staff member came to visit today.  A group of us gathered and he passed out sheets with questions on the topic of peace.  We took our time thinking through our responses and then sharing them with each other.  It filled a part of me that has lacked attention lately.

The truth is, I didn’t want to participate in this group.  I saw some of the other patients who were attending and thought they would have nothing to offer me in a discussion of peace.  I inaccurately judged both them and myself.

When a nurse that I have good rapport with encouraged me to attend the meeting, I decided to go and I checked my judgmental attitude at the door.   I have learned in past experiences that everyone has something to teach me.  In my role supporting adults with developmental disabilities I have often found myself in a place of awe at how those, whom society may think have little to offer, give me so much.

As we discussed the various questions, I reflected on the day in 2010 that we had to say goodbye to my dog, Sasha.  After I left the vet’s office, I went to the lake, to a spot her and I had visited together on several occasions.  It was early in the morning, and I had been awake most of the night.  I’ve never seen Lake Ontario so calm as it was on this morning.  The stillness of my surroundings nestled inside of me, and although I felt a great loss at losing my sweet canine friend, I also felt peace rooted in acceptance of my pain.  It was a moment etched in my memory that I return to from time to time.

Later, the question was asked, “is there a downside to peace?”  At first I stared blankly at the question, not sure of any adequate response.  Then unexpectedly, as I listened to the responses of others, they began to help me formuate a thought that has been milling in the back of my mind for a few weeks.

I have often quoted Max Erhmann, who wrote, “whether or not it is clear to you, no doubt the universe is unfolding as it should.”  I use this phrase to cultivate peace within myself, to relax from anxiety and find a sense of inner trust that all will be well.

But lately, I’ve been thinking about it and wondering, is it really true?  There are aspects of this life that I cannot accept as part of the universe’s design – when confronted with the brokenness of my community or myself, when I catch a glimpse of our devastation of the natural world, when I grieve for injustices occurring globally and in my own backyard.

Yes, pain is a natural part of life, but there is some pain which cannot be justified.  The abuse of those who are vulnerable has at times caused me great anguish.  There is no circumstance, no universe, where this type of pain is part of what “should be.”

So I’m left wondering, how do we cultivate a sense of peace in the midst of this type of pain?  I don’t have a good answer.  I do believe peace is something which must be cultivated, like a garden, and that we have the choice to act towards peace.  We do not need to wait for peace to come.  It’s likely that we must be intentional in our action and our awareness in order to experience peace.  Peace in the face of pain may at times look like healthy anger, it may look like lament.

In any form, the root of peace must be acceptance.  I cannot cultivate true inner peace while denying pain.  I must accept my brokenness to begin to heal.

Squishing Oranges

When I first arrived at the hospital, it was very hard to accept that I could not go home or see Kathryn as often as I wanted.  One of the first nights I was here I lost control of my emotions and although I knew there was no possible way to leave the hospital at night, I begged and demanded that the nurses let me go home.  The door to our small fenced-in courtyard had not yet been locked for the night and as I attempted to make my way outside, a nurse stopped me, which only increased my frustration.

Angrily, I went to the kitchen and picked up an orange.  I had intended to throw it, likely at a nurse.  Thankfully, I was able to recognize that throwing it would only make my situation worse.  Instead, I stood at the kitchen sink and began to madly rip and squish the orange in my hands.

This behaviour may seem strange, but from the perspective of Dialectical Behaviour Therapy (DBT) it was actually quite skillful.  DBT is all about trying to slow down our negative or destructive behaviours and choose ones that don’t make the situation worse.  The importance of validating one’s emotion while choosing better alternatives is the goal of DBT.  It wouldn’t have helped for me to just ignore my anger and try to sleep.  I needed to work the anger out and squishing the orange was the best method for the circumstance.

By squishing the orange I was doing a few things.  First, the kinetic movement of ripping and tearing at the orange gave me an outlet for my frustration.  Second, the feeling of cold, wetness and the scent were strong enough sensations to drown out some of the crowded thoughts racing through my mind.  I was processing my anger, dealing with my restlessness and relieving both mental and physical tension.  In the end, I was left feeling tired and the intensity of my emotion had decreased.  After a few minutes of focusing on deep breathing and cleaning up the mess in the sink, I was able to go to bed without further difficulty.

In the past during similar circumstances, I have sometimes chosen to harm myself, to destroy something important or valuable, or to direct my anger at someone I care about.  By destroying something with little value, like an orange, I am validating my intense emotion and desire to be destructive without actually making the situation worse.  I have regretted every time I have hurt myself or someone else, or damaged valuable possessions.  But I have no regret in squishing oranges, even if it does seem a little strange.

To Tell a Story

We need to tell the truth of our stories if we want to create better awareness, acceptance and resources for those who struggle with mental health.  So although what I’m writing about is not easy, it is my truth and I choose to tell it without fear.

I’ve said before that I struggle with Major Depressive Disorder and Borderline Personality Disorder.  Along with this struggle has come thoughts, and sometimes behaviours, related to suicide.

During this hospitalization, these thoughts have been particularly intrusive.  Like an earworm, they tunnel in and take over control.  My sensitivity to emotional stimulus adds fuel to the fire.

And so tonight I found myself weeping while listening to a Dave Matthews Band song, my mind beginning to spin.  Inevitably,  I end up thinking about my family, and especially Kathryn.  I struggle to twist some explanation into logic that would help them to understand, to ease the grief, anger and sometimes guilt that naturally follow a loved one’s suicide.  I desperately search for a way to save them from this pain.

At times I have written these thoughts down as letters meant to be discovered after my death.  Obviously, I’m still here, and the letters have been torn up and tossed away, in the realization that a) there is no way to ease a loved one’s pain in that scenario, and b) I want to keep living.

Tonight as I thought about writing this type of note, there were the usual ideas about stating my unending love, apologizing and explaining I could no longer endure the pain.   But I also thought about asking Kathryn to use my story (if I ended it after writing that note) to help others.  I started thinking about how broken the system is, and how clearly Kathryn and I can see it because we are in it.

And the thought occurred to me, I could stay alive, and Kathryn and I could work to change the system together.  This would likely be better than making her do it alone and with a great deal of pain.

There are others, I know, who have told their truths, stories about self-harm, thoughts or attempts at suicide, struggles with deep depression and other illnesses, and stories from those who have lost loved ones to mental illness by suicide or otherwise.  Mental illness and suicide touch us all.  People are talking about it, and we have to keep talking about it, for the health of all of our communities.  Because it makes it safer for those who may be struggling in silence.  And it generates resources for research into better treatment and care for those who need it most.

For anyone reading this who is struggling with suicidal ideation, the absolute best thing you can do is reach out to a friend, family member, crisis line or go to the local ER.  If one person doesn’t listen, tell someone else.

These are the words I repeat to myself when I most need them, they help me validate the pain and the cost of my choices, while helping me remember the times I have chosen life over death.

When thoughts of suicide spin me in circles, I feel haunted because it seems no matter what I do, these horrors return. And yet, they have also, ALWAYS, passed. Sometimes I have made it worse for myself, yes. I have sometimes chosen coping patterns that have led to greater struggle. But I’ve also sometimes chosen life and love and hope over that darkness. And the darkness has not consumed me.

I am still healing, yes, but I am alive. Death cannot heal, but Life sustains me. Life breathes, and moves, and brings yet more life. And in each small moment, I can choose to be alive. (From On Graduating from DBT)

Please, choose life for yourself.  Your life is worth saving.  Your story is worth being heard.

Old Buildings

I can see what remains of the old West 5th buildings being torn down from the view at my window in the new building.  Mental Health services have existed on this 55-acre property since 1876 when the Hamilton Asylum for the Insane first opened.  Since then, the property has undergone many changes and the ways in which mental illness is treated have drastically changed.

The new building which just opened in February 2014 was designed intentionally to reduce stigma and integrate mental health services into the community.  There’s a few ways they did this, including having accessible features like a gym, baseball diamond, walking trails and auditorium, all available for public as well as patient use.  Also, some services for the general public such as diagnostic imaging and other outpatient clinics have been moved to this location in hopes that the community will come to realize this hospital, although mainly treating individuals with mental health issues, is no different than other hospitals throughout the city.

It’s been interesting watching the old building get torn down.  I only visited it twice.  Once as a caregiver, there to support a client, and once as an inpatient.  Both experiences frightened me.  At one time the old building was new.  It was seen as state of the art, up to date, visionary.  Now in my memory, it seems like a dark, haunted, prison-like shell that did little to promote health through its design.

The new hospital does feel safer in some ways.  There is more natural light throughout the building.  The secure key card door entry definitely increases my sense of safety, particularly at night, knowing other patients cannot enter my room.  Being able to go out in the courtyard or upstairs to the gymnasium to throw a basketball around has created a sense of normal that hospitalization usually lacks.

As I read an article from the Hamilton Spectator, I was surprised at the intentionality that went into designing this building, with the specific goal of reducing stigma around mental illness.  I can see as I walk around, the features described and how the space feels like any hospital, not just a psychiatric hospital.

But can design really reduce stigma?  A large part of the stigma I’ve felt since my admission has come from people, not the building.  Attitudes and expressions, placing blame, shaming me, or using punitive techniques where therapeutic ones are more appropriate – these are all ways I’ve experienced stigma because of my diagnosis.

Some of the nurses will admit that the system is still not perfect.  That although this building is a great improvement on the old one, there are still many restrictions and barriers keeping those with serious mental health issues from being integrated into the community.  I’ve spoken as well to nurses who admit there are still old patterns of thinking among the staff and that the change we desire in how mental illness is treated will take time.

Currently, we can be thankful for the doctors and nurses who are compassionate, who see behaviours as symptoms of illness and who believe that a person “crying out for attention” deserves and desperately needs that attention given in a compassionate, non-judgemental and professional way.

Someday, this new building will also be considered outdated, the treatments offered here, archaic.  Research and progress push us forward as we desperately try to understand the inner workings of our own brains.  Just like buildings, our ideas can become outdated, this is as true about mental illness as any other topic.  There is room to redevelop, to grow into new ideas, to tear down and rebuild, to consider how we might better design our worldview.

This building will one day be torn down or converted for other uses but for now it’s a cutting-edge mental health hospital with integrated services for the general public.  Rather than being hidden away, out of sight of the community, it stands on the corner close to the road proclaiming, “I am here and I’m not different.”

A Follow Up

It was incredibly difficult to sleep last night.  Perhaps in part because I’ve been taking sleeping meds up until a few nights ago when I abruptly stopped taking all medications.  The stopping of the antidepressants and whatnot may have also played a factor in keeping me up.   And I seem to just have a lot to think about.

I was up until 5am and slept only a few short hours before breakfast.  I did my best to stay awake all day today, hoping that by eight thirty or nine I’d be able to crawl into bed exhausted.  But again tonight, sleep is elusive.  So I’m awake, and I figured since I’m awake I might as well be writing.

Hospitalization is not as dismal as it may have sounded in my last post.  It was an accurate and honest reflection of the place I was in when I wrote it, but I don’t feel that much despair all the time.  I do have some hope of getting better.  The waiting is incredibly hard, yes, and having restrictions on my time with Kathryn is aggravating.  Still, my doctor is honest, relational and attentive.  The nurses, for the most part, are compassionate and approachable, and most importantly, here I am safe.

Here’s the thing: 90% of the time, I’m fine. Healthy. Happy. Excited about my future with Kathryn and our families and passionate about the career I’ve found.  It’s the 10% that gets me in trouble.  It sneaks up, sometimes quickly, other times in hindsight I can see it coming.  And it’s like I go blind to the light, the hope, the future, and the temporary nature of my current state.

A nurse told me today that Kathryn can visit tomorrow “if I’m good.”  I nearly puked.  He generally is a good nurse, and I think well-intentioned.  Perhaps his sentiment was more “if it’s a good day for me.”  But that thought is out there, in the general public and even here within the mental health system – I should be able to control my actions and “be good.”  Yes, I must take responsibility for how my choices hurt myself and those closest to me, but if I had total control over these symptoms, would I need to be in hospital?

The answer is really complicated.  My self-destructive behaviours (whether in thought or action) are part symptomatic of poor brain chemistry, part learned behaviour, part addictive, part lack of better coping resources.  Like an alcoholic trying to quit, sometimes the intensity of the urge to hurt is greater than my desire to be well.  Sometimes hurting physically feels like the only way to dull the emotional pain.  Sometimes I find myself thinking or acting destructively with little understanding of how I ended up in that place.  Sometimes when my mind darkens, the relief of subsiding physical pain feels as good as (or as close to) living.

And it’s in these times that I need the support of the nurses here.  Not because “I’m being bad” but because I have a history of lacking the ability to cope well with overwhelming negative emotions.  I need to learn to separate urges from action.  I need to learn new responses to pain.  I need to learn when and how to ask for help.  These are all things I’ve been learning for the past four years, since my diagnosis, and they are things I have yet to master.

Everyone around me seems to be expressing confidence that electroconvulsive therapy may be the trick I need to get my brain reset and get into a new neuro-pattern, so to speak.  I dislike the idea of having electricity zapped through my brain, partially due to the stigma around ECT, partially out of a healthy fear of, well, electrocution and induced seizures.  One of my nurses compared it to the electricity of a defibrillator, used to reset the pattern of one’s heart.  The scary part is no one really knows how, why or when ECT will work, they just know for people who have tried a lot of other options with little results, it sometimes (or maybe often?) seems to help.

90% of the time I have hope.  ECT, although it’s a long wait and a scary treatment, may help with the other 10%.  Prayer might too.  So, for you and for me tonight, love and peace and hope and rest.  Amen.

One Month’s Chapter

Today marks one month since I was admitted to an acute mental health ward.  I’ve done this routine before.  I’ve come in for a week or two, they mess around with my meds, I realize how much I miss home and am grateful for my life and they send me on my way.

But this month has been different. In the days leading up to being admitted, I was experiencing a series of symptoms that I’m told is easiest to describe as an episode of mania.  Although I’ve gone through the questionnaires for bipolar disorder on a number of occasions with different doctors, I have never experienced mania before this episode, and never met the criteria for that diagnosis (and still don’t).

They don’t really know what is going on in my brain, and so they aren’t letting me go.   It feels more like prison than I could ever describe.  They decide who can visit, and when.  They’ve kept me from seeing my wife because they believe she ‘triggers’ negative emotions in me when she leaves. Of course this is true, who wouldn’t feel sad when their spouse had to go, but is it really a reason to keep a couple apart?  My emotions are pretty negative when she’s not allowed to visit too.

This Sunday is a baby shower for my sister-in-law.  You don’t know me at all if you don’t know how much I love the joy and wonderment of a new baby.  I have put a lot of effort and time into planning a shower that would honour the love I have for Sarah, to show her how truly rooted in our family she is, and to give everyone a good time.

But I won’t be attending the baby shower.  My doctor feels it would have an adverse impact on my mental health.  Do you understand this?  Neither do I.

I don’t want to dwell in self pity, but I do need to acknowledge how hurt I am.  I am hurt that the system is not perfect, that resources are few and mental health is still poorly understood.  I am sad and angry that at times Kathryn sides with the psychiatrist, even though I know she is trying her best.  I am sad that they can’t find a more effective way to help me, that it’s all just a guessing game.

My only act of ‘choice’ over my own life lately has been to refuse all medication, which of course makes them think I am more sick, less better.  But it is one of the few acts of autonomy I have.  And if the meds aren’t helping, then why should I take them?

Maybe the cocktail of eight different medications I’ve been taking for over a month would start to help if I kept taking them, maybe they wouldn’t.  Maybe the psychiatrist will refer me for electroconvulsive therapy, maybe he won’t.  Maybe it would help relieve my symptoms, maybe not.

There are no answers.  Only waiting.

As He Paces

J: “Hi Ashley.”

Ashley: “Hi, J.”

J: “Are you going out today, Ashley?”

Ashley: “Not sure, J.”

J: “If you do, can you bring me some stuff? Can you get it for me, Ashley?”

Ashley: “Um, sure, I guess so, J.”

J (to a nurse): “Hi L. Did you ever see One Flew Over the Cuckoo’s Nest, L?”

L: “Yes, I did J.”

J: “Remember when they get in the boat, L? Remember, Ashley?”

L: “I do remember that J.”

J: “We’re going to do that here, Ashley is going to smuggle in alcohol for me and we’re gonna get a bus because the harbour is too far away and we’re going to break out of here, L.”

Ashley: “J, I don’t think your plan will work too well if you tell the nurses about it.”

J: “Oh, I guess that’s true.  Isn’t it, Ashley?”

Ashley: “Yes, J.”

From the moment he arrived yesterday, until the end of this conversation (which just happened at lunchtime), I have found J to be rather agitating.  My annoyance began yesterday evening as he paced up and down the hallways, circling the unit, passing my room every few minutes.  Through my closed door I could hear his shuffling feet, loose change jangling in his pocket, his quiet mutterings to himself, and his much louder greetings to anyone he happened to pass by.

I was laying on my bed, trying to focus on how miserable I felt.  I was alone, bored and tired, sad and angry, and sick of being here and I wanted to focus on those feelings without annoying interruptions.  I wanted to mope and feel sorry for myself.

Somehow, he learned my name, probably overheard a nurse say it.  He’s pretty good with names, greets everyone by name.  It’s when he said “Hi, Ashley” to me for about the fifteenth time today that I decided I need to get past my annoyance with him and find his humanity, which really just meant looking for my own. Ubuntu: we find our humanity in one another, we are all connected to each other – in this place as in any other, even if we don’t want to be.

Currently, all the residents on this ward are over fifty except for two of us.  Most of the older folks are here while they wait for a placement in a long term care facility.  There are some activities for them to participate in, but usually not enough staff to facilitate much.  Unless they have family visit, they spend most of the day just waiting.

Maybe J’s pacing the halls is his way of working through whatever is going on inside him, his way of waiting out the days till he gets back to his life, or moves on to some place new.  Maybe J paces to keep up with his thoughts, the way I do by writing.  Or maybe he’s just acquainting himself with this temporary home, getting a feel for the place, sending out soundwaves to see what resonates a friendly response.