Poems of Further Neglect

Well, I still can’t write.  Because reasons.  Lots of stuff stuck in my head.  But apathy.

Also, the upcoming move is kicking my ass.  Even though I’m not actually doing anything.  I kind of suspect that’s why I’m stuck in anhedonia-land.  It’s like some evil plot that mental illness likes to play: Need to get something done?  Tough!  Time to put on the brakes and completely paralyze and defeat you!  Whee!!!

Or rather: meh.

I feel like if I don’t post anything at all, I’ll completely lose momentum and also NO ONE WILL EVER READ ANYTHING I WRITE AGAIN.  Because melodrama.

So you get more poetry.  My poetry (sorry if you were hoping for something more clever).  These are from my book I Am Not These Things.  Which you can totally buy and I will be pennies richer.

~~

THE ACTRESS

There are times outside of the proscenium
When you, your tongue loosened by wine, and fire reflected in your eyes,
Become especially beautiful

Your laughter mirthful,
Alternating between throaty guffaws and the giddy giggles of guilty indulgence

You close space
And stop time

Spilling compliments and golden droplets of affection
To coat my palms And tuck into my heart’s back pocket

The waves of your hair, platinum mixed with straw
More often punished from view
Now resist constraint, twisted carelessly in a loose braid
Ready to swing away, unpartnered
Or perhaps only waiting for my fingers to cut in
And begin the dance

~~

BEAUTY

When you holler
Hey baby Hey baby
Looking good baby
Look over here, beautiful
Uh huh
Hey gorgeous

I get angry because
How do you know I’m beautiful
Just by looking at me

When you don’t even know me

~~

MOTHERS

I distinctly remember being much more mature for my age
When I was your age
And more respectful of my mother

Don’t believe your grandmother, though
Because she wasn’t nearly as understanding as I am
When she was my age
Back then

/rk

Advertisements

Riding the Anhedony Pony

It would be great if I was prepared for days like this by getting everything done that I needed to ahead of time.  That’s not quite how it works, unfortunately.  I took it pretty easy this weekend because physically I was in the middle of a bad flare-up of my arthritis and figured that somehow that would prepare me for being super productive today.

Unfortunately my body and brain never seem to have their shit together, cooperation-wise.

So here I am today, over the worst of my arthritis flare (and therefore technically capable of getting things done), but I am stuck.  Can’t do anything.  Don’t want to, don’t care, and didn’t even want to crawl out of bed this morning.

Can’t think.  Can’t write.  Can’t get up and move things to the new house, which I was really excited to do yesterday but was physically unable to do.

Anhedonia has got to be the most pathetic and useless state of being.

If someone tells you they’re too depressed to do something, you might have sympathy for them.  I’m not depressed.  I just don’t feel anything or feel attached to anything or feel motivated to do anything.  I mostly want to just stop doing anything.  Even watching a video feels like too much work, because I’d have to make a choice about what to watch.

When I’m suffering from depression, I spend a lot of time sleeping.  But I can’t nap.  Everything seems unachievable – even nothingness.  I can’t even do that right.

I feel uncomfortable in my own skin.  Textures bother me.  Lights are too bright.  I don’t feel like eating, but if I don’t, I’ll feel worse (thanks diabetes!), so I eat anything that’s easy and doesn’t require decisions.  But it doesn’t taste like anything and it’s more about function.  Eat something and my body won’t bother me for another few hours.

It’s taking me a ridiculous amount of time to even complete this post, because no reasons.

Actually?  I don’t think I will.

/rk

#DyingnotDying

I’m dying.  I mean, faster than some and slower than others, but it’s not going to happen in the next 10 minutes.  Probably.  But we’re all dying, aren’t we?  So how exactly, if you are occasionally prone to morbid delusion, do you reconcile that?

I’ve had a few actual brushes with death, which doesn’t help dismiss the notion.  When your body is in a real and actual degenerative state with various organs telling you to go fuck yourself, it’s hard to ignore the steady decline towards what seems like an inevitable conclusion.  And migraines — sweet Jesus — when it feels like your eyeball is going to explode out of your head it is easy to imagine that a stroke is not only possible, but imminent.

IMG_0146I’m not sure where this started.  It pre-dates my actually being sick, I think.  As a child I suffered two things:  chronic nosebleeds and headaches.  (I say headaches, because I don’t think they were migraines back then, but getting regular headaches were still a bit of an anomaly, in that other kids didn’t seem to get them except when they were sick.)  The nosebleeds were presumably benign, but blood is scary.  Even more scary was the fact that I’d often get them in my sleep, so I’d wake up to a bloody pillowcase.  If that doesn’t convince a six-year-old with an active imagination that she’s dying, I don’t know what would.

Fast forward several years and there was more blood, this time in the toilet.  Yes, gross.  Yes, embarrassing.  Yes, I didn’t tell anyone about it for years out of said embarrassing grossness and instead just waited to silently die from a bowel perforation.

Thankfully I did eventually seek treatment, but not before my fatalistic (although at this point not entirely unjustified) delusion was fully entrenched.

This is where you will tell me that imagining that I am dying is what makes me sick.

Ok.

Now I’m imagining that I am dying because I am imagining that I am dying.

So thanks for that added layer of guilt.

See, this is the problem with delusion and obsessive thoughts.  If I could stop myself from ruminating, I wouldn’t be mentally ill.  It’s not that I don’t know much of it is nonsense — or at least that it serves no purpose to obsess over my mortality other than to further harm myself.  I know that.  But the thoughts continue to niggle at my brain, and the fact that I continue to get sicker reinforces it.

The definition of hypochondria is excessive preoccupancy or worry about having a serious illness. This debilitating condition is the result of an inaccurate perception of the condition of body or mind despite the absence of an actual medical condition.”  But that’s not me, exactly.  I do have medical conditions.  Real, quantifiable, testable conditions.  

When we were kids, my brother said to me “you don’t fake being sick, you really make yourself sick.”

Did I make myself sick?  I don’t know.  Maybe?  Sometimes when I’m feeling especially self-destructive, I do blame myself for that.  The illnesses that I have genetically come from both sides of my family.  I just seem to be a repository for all of them, all at once.  I am either very unlucky, or there is something about my mental and physical makeup that has made me prone to triggering them.

Ultimately though, does it matter?  If somehow I ‘talked myself into disease’ with my negative attitude, they’re here now, and real, and have to be dealt with.

Conversely, what if I didn’t cause them?  What if my frustrating paranoia has helped me.  Most of my illnesses were detected very early (including my skin cancer), and were diagnosed after initially being dismissed by doctors because I was too young, or the wrong sex, or they had doubts.  But I wasn’t wrong.

So maybe being paranoid and overly sensitive to every change in my body has served me well.

It would be a strange sort of irony if my conviction that I am dying is inadvertently responsible for the prolongation of my life.

/rk

Urbanitey Nite

We take possession of our new house tomorrow.  It will be a few weeks until our actual moving day, but it’s still pretty significant mentally as the shift from here to there.

The last 10 months have been really tough for me.  I made a decision to move out of downtown to the suburbs; which was sound financially and good for my partner, but unfortunately rather disastrous for me.  I can’t honestly say I didn’t see it coming — I just didn’t want to see it coming.  Sometimes my inner mental and emotional needs (and outer physical needs) aren’t practical.  But I’m finally getting the message that they can’t be ignored.

I grew up in the suburbs, and it always felt like a prison.  It’s difficult to explain.  All I know is that when I was there, I felt oppressed and constricted and trapped.  I started to get a glimpse of urban life in my teens when I got into an accelerated program at a high school downtown.  I ended up becoming best friends with a girl who lived not far from the school and spent most weekends at her house.  But I still had to go home eventually.  In my 20s I moved downtown for a year or two, but that changed when I started dating (and ultimately married) my first husband.  I was back in the suburbs.  Trapped again.

During my second (common-law) marriage we nearly went into financial ruin because of my push to move back to downtown.  It was an obsession, definitely, but I knew I wouldn’t feel right again until I was there.  And I did feel right once I was there.  Unfortunately I also felt trapped because of the relationship, so I left the husband, moved out of the house but stayed downtown.

Again, we were briefly pushed out of downtown when I became disabled and couldn’t afford the rent there while we waited the three months for the disability payments to come through.  But as soon as they did, I cut out of my lease after only six months and we moved back to our old neighbourhood downtown.

So what, exactly, made me think I could survive another move out-of-town.  Not just to the suburbs either, but the far suburbs.

I guess the simple answer is that I didn’t want to make it a money issue between my husband and I.  He’s a very practical person.  I wanted to be practical.  It was hard for me to justify the additional expense because of a feeling I had.

A feeling.

It’s interesting how, as someone with mental illness, I get angry when others diminish the impact of the effect of emotions on me as a sufferer of bipolar disorder, and then turn around and do the same thing to myself.  I guess when it comes to me, I can be a bit of a hypocrite.

So we moved to the suburbs and everyone adjusted quite well.  Except me.

I mean, I put on a good front for what seemed like a long while.  I tidied the house, I made dinners, I took the dog for long walks.  I tried to adjust.  But the bad feelings started to creep in, anyway.

I stopped doing much around the house.  I stopped showering.  I spent most of the day sleeping.

That went on a long time before I finally spoke up to my husband to tell him that I wasn’t happy.  It’s a really hard thing to tell someone you love, at a time when you’re supposed to be happy for finally being together, that you’re not.  Especially if they can’t change the thing that is making you unhappy.

So that’s where we were stuck for a while.  Me feeling unhappy and trapped but trying to fake my way out of it, and him being unhappy that I was unhappy and feeling stuck with no way to fix it, until finally thanks to some unexpected financial changes, we found a way to fix it.

At no small cost to them, mind you.  My son has to change schools again.  My husband now will have a long commute to and from work everyday.  All because I couldn’t hack it.

That’s a huge responsibility.

On the one hand, I’m relieved.  I’ll be back in the hustle and bustle of downtown.  Close to people walking and moving and being.  I don’t know what it is that is so important to me about that.  Something about knowing I can walk to everything.  I’m not trapped by needing a car.  Things are laid out in a grid and I can find my way around.  I guess there’s something about being downtown that makes me feel very self-sufficient.  Very un-trapped.

But there is also a certain amount of pressure, because I worry about everyone else adjusting.  If they hate it, I will be to blame.  Which I guess is why it was so difficult for me to speak up in the first place.  I don’t like always being the squeaky wheel.  Except unfortunately, I am always the squeaky wheel — or at least the wheel that squeaks the loudest.  When I’m miserable, everyone is miserable, because my misery tends to get amplified by my mental illness.  I hate that about myself, but I also can’t deny it.

The next two weeks will be the hardest as we dismantle our current house and set up the new one, and I have to deal with mixed feelings of exhilaration and guilt.  I want to jump ahead to when we’re settled in and know that it hasn’t been a huge mistake to put my needs first.

/rk

 

But You Don’t Look Sick

Being functionally disabled while outwardly appearing well is problematic.  I suffer from multiple chronic illnesses, each of which are either somewhat invisible to the viewer, or relapsing-remitting in their nature.*  This has never done much for my credibility when it comes to asking for accommodations, treatment or even sympathy.

reenacane

Rockin’ a cane in NOLA

It’s strange what a difference a cane can make.  I’ve used one for about 15 years now, on and off, but not all the time.  Which confuses people.  They have seen me (apparently) able-bodied and I’m still relatively young, so they ask “what happened?”  Even people who’ve asked me this question before forget the answer.  I have arthritis, and have had it for almost 20 years.  And even when I’m not using the cane, I have pain and stiffness.  The cane is just a tool.  And whether I choose to use that tool is often a push-come-to-shove decision.

Because I don’t enjoy the questions.  It’s not that I don’t understand people’s basic curiosity and concern, but 20 years of answering the same question can wear on a person.  But at the same time it is my own ‘fault’ for not assuming a more clearly defined ‘disabled identity’.

Like a lot of people who have disabilities, I don’t always want to make that my sole identity.  I acknowledge that there is a certain amount of privilege in not having to do so.  But it is still frustrating when I can’t get a seat on the bus when I really need one.  Or get dirty looks for taking the elevator instead of the stairs (or worse, having the only elevator be a wheelchair lift and being too embarrassed to ring for assistance without a wheelchair).

And this goes for my other disabilities as well.  The thing about having multiple chronic conditions is that even though separately they might not amount to total disability, their cumulative effects combine to create an unpredictable level of dysfunction.  On any given day I face complex physical and mental challenges that can feel too difficult to explain to people, especially strangers.

So I tend to spend a lot of time either not asking for the things I need, or just avoiding situations where I can’t control my environment.  I sometimes don’t ask for food and drink when I need it, because access to bathroom facilities is unpredictable.  I turn down invitations or leave early because there isn’t adequate seating (or only uncomfortable seating which will end up setting off a flare in my back or neck).  Depending on where I’m at mentally, I sometimes can’t handle spaces that are too loud or too crowded.  And when it comes to commitments I generally prefer to avoid them because I hate disappointing people when the day comes and it turns out I can’t follow through.

I suppose if I would just ‘accept my lot’ and invest some time in developing my identity as crippled, then people would lower their expectations of me.

But that’s a double-edged sword, isn’t it?  The last thing I want is for people to write me off.  And I’m not sure I want people to go out of their way all the time to open doors for me, carry things for me, or any of the things which go along with being seen as helpless.

Except sometimes I do want those things.  Sometimes I need those things.  The real battle I’m fighting here is with myself.

I still want to control when I’m perceived as disabled.

It’s no wonder that people have a hard time knowing what to do with me.

I guess what I need, in a strange way, is confidence in my disabled identity.  For most people, unless they are born with their disability (and maybe even if they are born with it), adjusting to living with chronic illness or physical and mental limitations is a process.  And specifically for people whose diagnoses came after long periods of uncertainty about their conditions, there is already a sense of having to ‘prove oneself’.  Especially with disabling conditions that are not visible to the naked eye.

I have a lot of emotions associated with being disabled, showing those disabilities and asking for accommodations:  Guilt, shame, insecurity, embarrassment, helplessness.  They get in the way of me making good choices in terms of self-care and being a good advocate for myself.  Of course, I have no problem with speaking up for others in similar circumstances, so it stands to reason that I should be able to do these things for myself.

It is only recently, after being unemployable for several years, and suffering new symptoms which have limited me from doing some of the things I love most, that I have had to face the truth that there is no going back.  That I need to make peace with the fact that being disabled is a full-time reality.  It is part of my identity whether I like it or not.  There is no escaping that fact, and if don’t start exercising better self-care and speaking up for myself when I need to, there are real consequences.  I am the one that suffers in pain for days because I sat on the ground for too long or exerted myself physically when I shouldn’t have.

And I need to stop worrying about what other people think about the choices I make.  There isn’t going to be time to explain myself to every person who doesn’t perceive me as disabled.  And that’s okay.  People make judgements about us everyday.

I have to stop trying to manage everyone else’s version of reality and worry about my own.

/rk

* What the heck, for the sake of clarity and perspective, here’s a list:  Arthritis and joint problems (ankylosing spondylitis, enthesitis, costochondritis, chronic tendonitis and degenerative disk disease); Crohn’s disease with fistulas, ulcerative colitis, and short bowel syndrome (my colon was removed in 1996); bipolar  I disorder with mixed episodes and rapid cycling; Asperger’s syndrome; non-insulin-dependent diabetes mellitus; chronic kidney disease; peripheral neuropathy and asthma (and scent-sensitivity).

Going to Extremes

I am an addict.

Managing my addictions is not quite as simple as managing my ‘drug of choice.’  I can turn anything into an addiction.  Drugs and alcohol?  Certainly.  Been there, done various kinds of that.  But I can turn anything into a drug.

It’s not an intentional thing, but I am vulnerable.  I am blessed with a genetic pre-disposition for both addiction and mania.  And even when I try to manage the known enemies — when I try to avoid excesses of drugs, alcohol, coffee, sugar — my brain has a way of filling that void.  Of turning interest into obsession.

Anything to turn up the charge.

I am never clear on whether it is the mania that grows from the obsession, or whether obsession breeds mania.  I only know that the second I become immersed in a thing and once it captures my undivided attention, there is no turning back.  I become consumed.  I cannot pace myself.  I can’t not do it.  Time away from that thing is an irritation and makes me anxious.

I do it with people.  I do it with activities and projects.  Until the inevitable day that I crash and burn.

Some of these episodes are short-lived, like the time I pulled an all-nighter in my early 20s determined to build a scale model of my boyfriend’s motorcycle for his birthday.

Others can go on for months:  What started out as a half-hour on my exercise bike a few times a week rapidly became spinning for 5 or 6 hours a night, anorexia and a 30-lb weight loss in the space of a few months.  And then there was the time I renovated a rental house from top to bottom, including ripping out all the carpets, tearing down wallpaper, refinishing the floors and ripping out the kitchen cupboards.  I was also rescuing, (hoarding) and refinishing furniture at the same time as part of what I imagined to be my way of making the world more beautiful and solving the landfill crisis.

I have done this with people too, and it’s one of the things that keeps me from forming close friendships.  Whether romantic or platonic, when that rush of adrenaline starts, I am prone to go to extremes.  I struggle to hold back my feelings.  I have made mix tapes, sent flowers, bought gifts and written long elaborate letters.  In my overzealous determination to get to know everything about the other person and drink them in, I can be (I imagine) quite intimidating.

And so I have to take care.  I have to take care not to take notice.  Not to over-examine.  I struggle to remain casual about things.  Not to check my weight on the scale.  To move, but not to exercise.  To be crap at housecleaning.  To let people take the lead in relationships.  To not keep lists.  Because focus becomes hyper-focus and it tips the scales into obsession and mania.  And mania can kill.

But.

There is always a but.

Writing is an obsession.  And it’s when it becomes obsession that I get results.  Where I suddenly have drive.

I don’t know how to resolve those two things.  

I know that mania is unhealthy.  I know that obsession breeds mania.  But the high that comes from writing is what keeps me going.  Writing gets me high.  Writing is the high.

And it’s more than that.  Writing at this point is both necessary and inevitable.  I have been writing for decades even when I wasn’t writing.  Even when I resisted putting my thoughts down on paper out of fear and some misguided deference to my journalist father, the words were still writing themselves in my head.

The obsession was still there.  It didn’t disappear or waver.  I wasn’t controlling anything by locking it inside.  The dam had to burst sometime.

So now I write, and play a dangerous (and dangerously satisfying) game of control — letting the stories out one-by-one, controlling the rate of flow, so none of us drown.

/rk

What’s Up Pdoc?

It’s difficult for me to speak positively about the psychiatric profession.  In spite of my own negative experiences, I see therapists on television who seem wonderful, dynamic and caring.  Gabriel Byrne’s Dr. Weston on “In Treatment” was fascinating.  Even when he made ethically questionable decisions and recommendations to his patients, there’s a man I’d enjoy talking to.  And Vanessa Redgrave on “Black Box” has already demonstrated in one episode that she is able to unflinchingly tackle her patient’s flawed thought processes head-on, while still managing to remain kind and compassionate.

But those aren’t real people.  Real psychiatrists generally aren’t like what you see on television.  I’d like to believe that those types of practitioners exist — because it’s hard to remain hopeful if you believe an entire field of medicine is a sham — but I have yet to meet any of them.

I know I’m probably being somewhat unfair in my expectations.  One of the reasons television pdocs have the right answers is because they’re written by the same people who ask the questions.  It’s not real life.  In real life you have to think on your toes and answer off-the-cuff.

Except… not really.  Psychiatrists are supposed to be trained for this sort of thing.  It’s their job.  They have scripts and scenarios.  They are supposed to know the warning signs.  They are supposed to know what to say and what not to say.

And yet in my experience, most of them say almost nothing at all.

Getting a referral to a psychiatrist is no small feat.  If you’re lucky, you might see one within a year of a referral from your family doctor.*  At the time when I first asked my doctor for help with my mood, her only option while awaiting referral was to diagnose me with suspected depression and anxiety and to prescribe me antidepressants.  They only made me more anxious, so she increased the dose.  This induced mania and psychosis.  I still had no referral.

In a moment of clarity between psychosis and the ensuing crash, I returned to the doctor’s office and told them I thought I might do something bad.  They insisted I go to the ER, whether by ambulance or they could call my mother.  I opted for my mother.

pay attentionThey left me alone to wait for her in one of the examining rooms.

Alone.

I went through the (unlocked) drawers and cupboards.  I found a box of razor blades.

Razor blades.

I took one out.  I stared at it for a long time.  I put it in my purse.

We waited for several hours in the ER.  Eventually a doctor from psych came to talk to me.  We discussed how I was feeling and the fact that I had been suffering from insomnia for several months and that I had lost more than 20 lbs.  She confirmed that I had a referral to a psychiatrist.  She told me it would be best to wait for the referral.

I told her again that I was feeling suicidal and I asked to be admitted.

She said that wouldn’t be possible as the psych ward had no beds.  She said it would be best to wait for the referral and she could give me an emergency hotline number and a bottle of sleeping pills to help me sleep.

A bottle of sleeping pills.

I asked her if she thought giving a bottle of sleeping pills to someone who says they are suicidal was good medicine.

She said she would only give me 3 or 4 instead.

I removed the razor from my purse and put it on the table.

I was admitted to the hospital.  Because there was no room in the psych ward, I was admitted to one of the regular floors with a security guard posted to sit in the room with me for the first 24 hours.  The next morning I saw a psychiatrist.  He offered to prescribe antipsychotics and change the antidepressant I was on.  But only on the condition that they would give me one-third the dose of the narcotics I was on for pain.

Their strategy to turf me was bitterly transparent.  They would give me what I needed — the drugs for my as-yet undiagnosed bipolar — but I’d have to be willing to go through narcotic withdrawal.  The fact that I had been legally and justifiably prescribed those narcotics by my doctor didn’t make any difference.  Ultimately they knew I’d either refuse and sign myself out of my voluntary committal or I’d accept and bail after a few days of withdrawal.  I lasted about 3 days.  But at least I now had the medications I needed to bring me out of mania.

happy cartoonWhen my referral appointment finally came, I met with the psychiatrist at the Royal Ottawa Hospital.  She reviewed my history.  She reviewed my medications and asked me if I felt they were working.  (No.)  She upped the dosage.  I saw her several more times.  Every time, she asked if I felt there was an improvement.  There was no counselling.  (Unless you count “try to think positive thoughts” and “try to focus on what makes you happy”)  She just continued to make changes to the medication and say “these things take time.”  Then I got transferred to a different psychiatrist.  Same thing.  Then a third.

There was no therapy.  There were only drugs.  Antipsychotics, sleeping pills, antidepressants, anti-anxiety pills, lithium.  I stopped going.

When it comes to mental illness in Canada* there is a certain pattern of triage that consistently occurs.  If you suffer from depression, maybe you stand a chance.  You’ll see either a psychiatrist or a psychologist and the chances are good that eventually you’ll get talk therapy or behavioural therapy to change any faulty thought patterns that you need to go along with any drug cocktail they deem necessary to change your brain chemistry.  Someone will ask you about your trauma.  Someone will help you deal with your abuse.

But if you have bipolar disorder or schizophrenia, you become a medical patient.  Drug therapy is the only perceived solution.

And that is incredibly short-sighted.  The human mind is complex.  In the same way that my bipolar has shaped my experiences, my experiences have shaped my bipolar.  Why wouldn’t I benefit from therapy?  When the voices in my head haunt me and taunt me, why shouldn’t I be prepared with the tools to fight them?  With all the studies that show links between trauma and mental illness, it is completely irresponsible how the mental health industry fails certain categories of patients.

I acknowledge that it’s a complicated issue.  First and foremost are the restrictions placed on mental health treatment by the government.  Under OHIP, there are limits to coverage for mental healthcare as well as limits to the number of visits that are covered (which might make sense for things like situational depression or seasonal affective disorder, but not for a great majority of permanent and lifelong mental illnesses).  Compounding the problem is the unhappy marriage of the fields of Psychology and Psychiatry.  They are unwilling bedfellows at best.  Disagreement (and occasional outright disdain) between the two professions stands in the way of patients receiving possibly more effective combined therapies.

I try not to be pessimistic.  I don’t always succeed.  At a time when mental health organizations are pushing social media campaigns to remove stigma and encourage an open dialogue about mental health with things like Bell Canada’s “Let’s Talk” and ROH’s “You Know Who I Am” (and weirdly named “Friends with Benefits”), there is still a more important area of dialogue that I feel is missing.

And that is the one between mental health professionals and their patients.

You have a responsibility that extends beyond your prescription pad.

/rk

*For reference, I am in Ontario, Canada in a fairly large city.  Referral times for other locations certainly vary, but it seems to be a common theme in most places that referral times are one of the things that pose the greatest risk for patients with mental illness, especially those at risk of suicide.