hope is not enough

BY EMILY DICKINSON“Hope” is the thing with feathers -That perches in the soul -And sings the tune without the words -And never stops - at all -And sweetest - in the Gale - is heard -

There comes a day when you open to Hope, examine its feathers, begin to hear its song.

23843599_10214476329163299_5196544792506332245_nWhistling very quietly you make plans for him, and even for yourself. Not big plans, small plans like a Service Dog for him, and a divorce for you. The dog will ground him, and he will keep getting better. He will work, he will find stability and he will have times where he is happy. For you, it’s just a small hope, a little house, a little life of your own, a means to live this life you imagine.

The call comes, just as it always does. The call after the successful holiday visits, after your biggest worry was how to pay for a dog for him. Aside: you mistype dog as god and consider leaving the typo. Spoiler: you never get to figure the pay for it part out. The call after everyone has assumed that he is now Better and Everything Will Be Okay and are secretly so fucking relieved because having to keep hearing about his struggles was rather exhausting, and they would like the much easier task of thinking all is Just Grand now.

The call comes and he is unstable, he is very ill and he is back in a hospital. You’ve had this call dozens of time, you still whistle and hold Hope’s feather between your thumb and first finger.

Then silence. Silence for days and days and you don’t know where he is and no one is answering your messages. The silence perches in your stomach. The silence does know how to whistle.

The new call came this morning while you were drinking coffee. The new call included the phrases,

  • He needs another level of care and they’re not it. They had Been It for four years. You thought they would Be It when he got his dog (or typo god). You thought this is where he might feel happy because you know what really sucks? What REALLY SUCKS is being 22years old and struggling with a serious illness for the last 11 years. An illness that people judge and blame you and your family for. Nobody wants that.
  • He needs a  ‘Long-Term Therapeutic Living Community”  Info: 1. they are Capital E Expensive, but 2. You have good insurance! but 3. they have very long waiting lists. Aside: He has good insurance only for another few years under his dad’s plan.
  • We’ve practically been keeping him for free / We can’t adopt him / What did YOU think was going to happen to him long-term?! This is where you mention the dog, the work, the bit of happiness and feel foolish.
  • We don’t know what more we can do for him / This is the best he can manage / He isn’t going to get better than this.

He isn’t going to get better than this.

The feather is gone and you are trying desperately not to sound like someone who is sobbing into a couch pillow between mumbled replies.

Then you hear the voice that said to you years ago that if you ever tried to leave, to divorce that you would be destitute and live in a ‘rat infested shithole’ which is now somewhat funny because of the current news. Still, how can you possibly think of divorcing, taking money for your little house when your son will need it for the rest of his life. How can you think about yourself when you realize he will not get better and you will be in charge of him for the rest of your life. IMG_20171202_011100_116.jpg

game face

images-4“There will be bad days, Times when the world weighs on you for so long it leaves you looking for an easy way out. There will be moments when the drought of joy seems unending. Instances spent pretending that everything is alright when it clearly is not….” Shane Koyczan, excerpt from “Instructions for a Bad Day

21451861There will be days where your best is not crying, at least in front of everyone, at least not for extended periods, at least not to the point of boogers running down your face (save that for the car where you have tissues), that your best is not crying, and not curling into a ball wishing the world away. Some days that’s all you’ve got.

When I quit drinking 10 years ago someone said to me that I would feel better, that I would feel everything better, pain, joy, happiness, anger, sadness, you know everything. She also told me not to believe everything you think. Solid advice that still applies.

houseToday I am feeling all of the things, emotionally, mentally, physically, metaphorically…. (note: I feel most things metaphorically, writer thing… maybe, not sure… actually I have no bloody idea and am freestyling this bit). Medically, things have been a bit rough. So much so that I have four new prescriptions and more doctor appointments than I would prefer (I would prefer zero appointments, but still). Everything hurts, well not everything, just the things I’m focusing my attention on. I feel a bit like a House episode, minus the curmudgeonly doctor. My doctor is very nice, and quite firm, which is why I’m sitting here looking a gaggle* of pill bottles. *a herd? a cluster?  a bevy? what do you call a collection of medication bottles? I even googled it, apparently it’s not a thing.

And then, because I’m me, and I swear this stuff just finds me  when I’m sitting innocently being responsible (you know, and not crying, and not assuming the fetal position, and doing all the grown-up things that I don’t feel like doing) I find this little bit of music, this tiny lyric.

Vair me o, ro van o
Vair me o ro ven ee,
Vair me o ru o ho
Sad am I without thee

1008012I find this little bit of music, and there are no oatmeal raisin cookies in my house, no lightly frosted lemon scones, no dark chocolate truffles with caramel and sea salt, none of these things, so I have to sit here and feel all the feelings, which is still not my favourite. I’m even out of lemons for my tea.

Shane also says in his poem “There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go….”

Okay. Okay. I’m on it. Letting go. (for extended thoughts on letting go, with lots of pictures and convoluted thinking click here ), putting on my game face (the one that says “I ain’t bovvered”), and making tea without lemons, but with lots of honey.

96d1f7315827b85e67e905baad5a1243

 

solid rock

Alex Colville, 1954 Horse and Train

Alex Colville, Horse and Train,

Whatever I thought it would be like, it wasn’t this. And I did think about it, we all did. We thought about it a lot in our own ways. Of course there were, increasingly faint, bits of hope that we would cling to, even against all logic, we would hope. Just the same, we knew this day would come, and when it did it was all the things we feared it would be, but also nothing we expected.

“Love is so short, forgetting is so long.” – Pablo Neruda

It was a good service, as these things go, nice music, a moving slideshow of photos of you, appropriate and moving readings and memories, a traditional hymn, and a choir rendition of All You Need is Love, complete with kazoos. It was very John like, right down to the fabulous food we shared afterwards. Everyone seemed pleased. It was closure, it was a send off, it was people holding each other up, it was all you could hope for really.

scribble face 3It was all you could hope for, and yet, I still find myself walking through mud, through fog, through solid rock. I forget things. I lose hours doing nothing. I stare at nothing. I stare at your things that now are in my home, but are still your things. I sleep longer, and am still tired. I stay up too late.

It’s possible I am pushing through solid rock
in flintlike layers, as the ore lies, alone;
I am such a long way in I see no way through,

and no space: everything is close to my face,
and everything close to my face is stone.

I don’t have much knowledge yet in grief
so this massive darkness makes me small.
You be the master: make yourself fierce, break in:
then your great transforming will happen to me,
and my great grief cry will happen to you.
~ Rainer Maria Rilke (Translated by Robert Bly)

This is the grief work they talk about. Pushing through solid rock, an apt enough description. I dream about you sometimes, not the comforting dream where you tell me all is well with you now and you are in a better place, just confusing dreams. Someone said that to me, a couple of people did actually, said that you ‘were in a better place’. I so wanted to punch them in the throat, to wipe the smug, sympathetic, head tilted ever so slightly to the side expression on their faces. I think that would be the anger stage of Loss.

According to Elisabeth Kübler-Ross the 5 Stages of Loss are:

  1. Denial and Isolation – buffering
  2. Anger
  3. Bargaining – the ‘if onlys’, the ‘what ifs’
  4. Depression
  5. Acceptance

I honestly believe I did everything I could. Wait, that’s not true. What if I had shown up on your doorstep, dumped out all your alcohol and physically dragged you to the hospital? Would that have worked? I don’t think so, but I still take out these thoughts and hold them awhile, feel their weight in my hands, build a fantasy around them where, in the end, I save you. After a while I put them down, but I still feel their weight. More than anyone I should have been able to save you. It was everyone else’s first experience with this disease, I was a seasoned veteran. I had done this dance before, I knew all it’s steps. I saw you leaving well before anyone else.

buddha-grief-quoteI saw you leaving, and I let you go.

I let you go. I talked to you, wrote to you, I wrote about you. I wrote about our disease. The one that killed our father, has a hold of my son, the disease that I only get a daily reprieve from.

But I didn’t save you. I know, in my head, that I didn’t cause, couldn’t control or cure you. I know this in my head. Sometimes it helps, but not always. A year ago we almost lost you, but you came back. I thought you might stay. Maybe that was the time to save you that I missed. Maybe.

I still don’t know what to do with your clothes. I don’t know what to do with our stories, the ones only you and I understood. Where do I put the parts of myself that were yours too? I don’t know. I don’t know what to do with a lot of things, things I should be doing, raking the leaves, clearing out the house so it will sell, making appointments, the business of living.

So I sit, pen scratching across paper, drinking coffee, and staring at the still green willow leaves, who will only fall after all the other leaves have been dutifully raked. Mostly I sit staring and nothing. Four of my orchids are re-blooming, did I tell you? No, of course not, what was I thinking. They’ve spent a year deciding to bloom, a year of somewhat attractive foliage, but now, now they are spectacular.

There is a metaphor in that somewhere, but I can’t quite grasp it. Anyhow, you get my meaning.

 

 

Weathering

me with quote

Weathering

Literally thin-skinned, I suppose, my face
catches the wind off the snow-line and flushes
with a flush that will never wholly settle. Well:
that was a metropolitan vanity,
wanting to look young for ever, to pass.

I was never a pre-Raphaelite beauty
nor anything but pretty enough to satisfy
men who need to be seen with passable women.
But now that I am in love with a place
which doesn’t care how I look, or if I’m happy,

happy is how I look, and that’s all.
My hair will grow grey in any case,
my nails chip and flake, my waist thicken,
and the years work all their usual changes.
If my face is to be weather-beaten as well

that’s little enough lost, a fair bargain
for a year among the lakes and fells, when simply
to look out of my window at the high pass
makes me indifferent to mirrors and to what
my soul may wear over its new complexion.

–Fleur Adcock

I love this poem, and one day I hope to have that time among the lakes.

Perhaps even more now that I am weathering. My hair is going grey, my waist thickened, and my face, while never pretty, is showing the years in various lines and wrinkles.

I was never a pre-Raphaelite beauty
nor anything but pretty enough to satisfy
men who need to be seen with passable women.

That’s me. Never the attractive, pretty, or sought after one. I’m at peace with being somewhat plain (except for the unruly hair), there are worse things, much worse things. Perhaps I’ll be the type of woman who looks fabulous at 70, but a life of being average looking, a life of more than a few difficulties has given me some insights.

  • Eat the damn cake, because you know, it’s cake.
  • Hug people and tell them they matter, because people do matter, and often need to reminded of this.
  • Hold on to what you love. Let go of what hurts you. Seems easy enough. Still working on this one.
  • There are no knights in shining armor, you have to rescue yourself. I used to dream of being rescued, of someone loving me like Neruda wrote in his poems, now I’m okay with reading his poetry to myself, and taking care of myself.
  • What other people think of you is none of your business, so try not to care so much about that. Still working on this one too.
  • Every day alive is a gift, don’t waste it. It’s been 14 years and 2 days since my friend Cathy died. My friend with three kids the same ages as mine. Every year I get with my kids is icing, is precious. Every spring, every holiday, every damn day. I try not to forget this.
  • There is such a thing as a free lunch. Sometimes you get the lunch, and sometimes you give someone the lunch. That’s how life works.
  • Kindness, it really is the new black. It goes with everything.
  • When things get uncomfortable, try not to reach for the first, or second, or third distraction. When you feel rotten, feel rotten, don’t wallow, but don’t push it down and pretend it doesn’t exist. Lean into it, and when you’re ready let it go. Lean on your friends, and let them lean on you. It’s how we all get by, with a little help from our friends.

It’s not a huge amount of knowledge, but it’s what’s I’ve got right now. I think maybe if I had had an easier time of it, if I was ever seen as beautiful, or wealthy or any number of things, that I might not have had my ego kicked into the dirt enough times to soften it, to soften me, to weather me. This is a good thing I tell myself when I look in the mirror and see every single year on my face, around my waist, on my belly and on my thighs, and I then I channel Anne Lamott as best I can

“Your problem is how you are going to spend this one and precious life you have been issued. Whether you’re going to spend it trying to look good and creating the illusion that you have power over circumstances, or whether you are going to taste it, enjoy it and find out the truth about who you are.”
― Anne Lamott

So, another year older, and I’m still walking and breathing. I’m happy, most of the time, and grateful, so very grateful for what I do have.

not my first rodeo

IMG_7450This is not my first rodeo.

Not the first time I’ve received this call. Not the second, third, or fourth time either. I don’t know what number I’m on. Not the first psych hospital I’ve dealt with. Not the first time we’ve talked about suicide.

I do know there is always that part of me that exhales at the sensation of the sky finally falling. The, Ah, there it is! sensation that you couldn’t quite put your finger on until the phone call.  It’s not that I think about it all the time, I don’t, it’s just always there, hanging over me, just hanging around in the background, waiting. One moment it’s clear blue, and then the sun disappears, and purple-black clouds fill the sky, my skin gets cold, the wind picks up and I realize that they were always just at the edge of my vision, waiting. For what? It’s hard to say. Hope? For me to say “he’s doing well” a certain number of times, and to start to believe it?

The shift in me starts with the caller ID, I start to feel cold, to watch the sun disappear. As details and events become confirmed (confirmed, because part of me is always waiting for this call) I become still, focused, logical, organized, and pragmatic.I do what needs to be done. I call people, I email, I research, I take notes, lots of notes, notebooks full of names, places, numbers and details. I go through the check list, he’s alive, check, he’s safe, check, will he remain so long enough for me to sleep tonight?

I’m tired. Just really tired. Maybe repeated combinations of sad, afraid, anxious, pessimistic and optimistic eventually just register as tired. I do bits of the Kübler-Ross tango, but more quickly and with less intensity than before. Really I’m just tired. And no, generally I don’t want to talk about it.

Over the years we’ve let a lot of things go. When you talk about your kids and their accomplishments, their dreams and hopes I generally stay quiet. What could I possibly add? That our successes are measured on a much smaller scale. Is he alive? Is he safe? Does he have times where he feels happy? School, grades, girlfriends, cars, jobs, these are things that fell away.

What thou lovest well remains,
the rest is dross
What thou lov’st well shall not be reft from thee
What thou lov’st well is thy true heritage

– excerpt from Canto LXXXI by Ezra Pound

And so it is.

A Lump, the Mammogram, and What Actually Matters

“A poem begins as a lump in the throat, a sense of wrong, a homesickness, a love sickness.” -Robert Frost

I wrote this a while ago, and in honour of Breast Cancer Awareness Month, I’m reposting it here, it’s also published here.

I’ve been busy lately. We’re all busy, I realize. As much as I can, I try to put on my oxygen mask first, I really do, but something always falls through the cracks. Something like a mammogram.

Mammograms, with ultrasounds that I’m supposed to get every six months, mammograms that my gynecologist sends me sternly worded letters via registered mail to go and do – NOW. Reminders that kept getting bumped by my more immediate needs, and the endless needs of family. I had good intentions, I was going to book the tests, I was, as soon as I had some time. I need to go for the extra squeezy scans, and 30-minute ultrasounds, and I just could never find the block of time. That is, until last Friday night.

It had already been an emotional evening, and was past midnight when I was going to bed for the fifth time, and that’s when I found it – the lump in my right breast, cozied up near the lymph nodes. One of the advantages of having already been going through a stressful time is that there was, at first, little energy left for panic about a lump I didn’t think was there…last week? Last month? When was the last time I had done a Breast Self-Exam? I looked up at my bedroom ceiling and said, “REALLY?” to no one in particular.

I went to bed, too exhausted to obsess. Before I opened my eyes the next morning my first thought was, “I have a lump in my breast.” I checked, yes, it was still there. I spent ten minutes staring at the beige ceiling, wishing I’d painted it so I could have a colour to stare at. I thought about pretending I didn’t find anything, that it was just another cyst, that I shouldn’t waste anyone’s time. Then I sat up and called my doctor. I told them I found a lump. They said:  “Come in this afternoon.”

I looked at myself in the bathroom mirror and thought, “This is how someone with a lump in her breast looks.” I imagined myself without breasts, scars running across my chest, like some of my friends. I imagined myself without my hair, a mane that is generally so unintentionally big it could use its own zip code.

“I have a lump.” The thought permeated everything I did that day, now accompanied by jolts of panic. I asked one of my kids to unload the dishwasher and added, in my head, “and I have a lump.” My brain shouted it to each person I saw, “Dry cappuccino, please – did you know I have a lump?!” I was fascinated by how everyone was acting like it was a perfectly ordinary day. I thought about the months I’d let slip by without getting that mammogram. I told myself I had been too busy, but that was only half true. I was tired of being poked at, I just wanted to go for a spell where I didn’t have to wear a damn hospital gown, where I wasn’t a specimen. Then I thought, “I won’t live to see my kids get any older than adolescence.” Suddenly, I hated myself.

Soon enough I was in my doctor’s waiting room, then after being weighed and measured I was lying down in a paper gown that opens in the front, being examined by my doctor. He is the first doctor I’ve had who is younger than I am; perhaps this will be the trend from now on – younger and younger doctors examining my aging body. He’s a nice guy, and we joke around a lot. He’s seen me through a major car accident, liver failure, pneumonia, hip surgery…and we always manage to find some bit of humour to break things up a bit. So I thought he was joking – I actually started laughing – when he said, “You need to see a surgeon right away.” Then I saw his face.

I finally got that mammogram I’d been putting off – STAT. All eight views, with stickers attached, and the lump clearly marked. I had the ultrasound to map the lump’s exact location and size. I spent two hours in freezing rooms wearing a paper gown while technicians spoke encouragingly to me. I think, “They are always nicest to people who have cancer.” Then I wait. And I think about my body, my breasts. I remember the touch of a lover’s hand and wonder if I will ever feel that again. I remember the years of nursing my children. I think about what makes me beautiful, what makes me a woman.

I wait, my thoughts cycling for two days, before I see the equally friendly surgeon. I bring a friend, a breast cancer survivor, who brings a notepad and pen. More examinations, more discussions of test results, another front-opening gown, and I don’t have cancer.

I don’t have cancer.

I almost feel guilty. Everyone has been so kind, so supportive, and I don’t even have cancer. My friend is thrilled, and now I really do feel guilty, as if I’d made up the whole thing for attention.

Shortly thereafter, I acknowledged my tendency to make myself crazy with very little encouragement; I can take a small bit of information and just know that I’m sick, I’m being cut up, my hair’s falling out, and not too much later my children are motherless. But there is so much genuine fear in finding a lump in your breast, or anywhere else.

What took longer to sink in was how much love and support there was for me. This drama took less than a week, and in that time I had several friends and many health care professionals surrounding me with love, even as I spun my tragic stories faster and faster. In the end, that’s what I take from this experience:  Even when I am terrified, I am surrounded with love and compassion.

I have a future of frequent and intense breast examinations to monitor all my lumps (I have many, as it turns out), and I’m okay with that. Bad things can and will happen, and what’s important is that we love and support each other. What’s important is that we women allow ourselves to be loved and care for, because we’re all we’ve got.

Pablo Neruda’s poem, “Body of a Woman,” has become a touchstone for me, especially when situations like “the lump” arise and my sense of what is good and what is beautiful about myself become blurred. He writes of his love not only for a woman’s body, but also her spirit, grace, strength, heart and soul. It is a profound description of beauty and love that does not relate to size, cellulite, or scars, but of enraptured awe. This type of love and regard would endure regardless of surgery or disfigurement, as it encompasses thewhole woman, not simply superficial slices of her. It is an earthy, sensuous love that knows nothing of models, magazine covers, or western society’s ridiculous expectations. Neruda conveys his passion, appreciation and love for the beauty and awe of a realwoman’s body.

Body of a Woman – translation

by Pablo Neruda

Body of a woman, white hills, white thighs,
you look like a world, lying in surrender.
My rough peasant’s body digs in you
and makes the son leap from the depth of the earth.

I was lone like a tunnel. The birds fled from me,
and nigh swamped me with its crushing invasion.
To survive myself I forged you like a weapon,
like an arrow in my bow, a stone in my sling.

But the hour of vengeance falls, and I love you.
Body of skin, of moss, of eager and firm milk.
Oh the goblets of the breast! Oh the eyes of absence!
Oh the roses of the pubis! Oh your voice, slow and sad!

Body of my woman, I will persist in your grace.
My thirst, my boundless desire, my shifting road!
Dark river-beds where the eternal thirst flows
and weariness follows, and the infinite ache.

Corpo de Mujer

Cuerpo de mujer, blancas colinas, muslos blancos,
te pareces al mundo en tu actitud de entrega.
Mi cuerpo de labriego salvaje te socava
y hace saltar el hijo del fondo de la tierra.

Fui solo como un túnel. De mí huían los pájaros
y en mí la noche entraba su invasión poderosa.
Para sobrevivirme te forjé como un arma,
como una flecha en mi arco, como una piedra en mi honda.

Pero cae la hora de la venganza, y te amo.
Cuerpo de piel, de musgo, de leche ávida y firme.
Ah los vasos del pecho! Ah los ojos de ausencia!
Ah las rosas del pubis! Ah tu voz lenta y triste!

Cuerpo de mujer mía, persistiré en tu gracia.
Mi sed, mi ansia sin límite, mi camino indeciso!
Oscuros cauces donde la sed eterna sigue,
y la fatiga sigue, y el dolor infinito.

Vente poemas de amor y una cancion desesperada – Pablo Neruda, 1924

It’s four o’clock in the morning, Damn it*

stl0006_20010216At four o’clock this morning I’d been asleep for 5 hours.

Today I took him to the airport.

Four nights ago I drove him to the hospital with an empty bottle in my pocket. Four nights ago I was already in my pajamas and wanted only to go to bed and to sleep, when he showed me what he’d taken. Four nights ago he said he reached his bottom and was ready to recover, but that’s not why I took him to the hospital.

I was not sitting in the ER once again, with my son hooked up to monitors because of the street drugs he had been relapsing on for weeks.  I wasn’t there because of the altered state he went into the previous week during his birthday dinner, in the nice restaurant, surrounded by nice families. The altered state that was caused because he had stopped taking his prescribed medicine two weeks ago. I was in the ER because of cough syrup. Cough syrup he’d been drinking by the bottle, cough syrup that contained Tylenol. I took him to the hospital when I realized he’d been taking massive doses of Tylenol unintentionally with the cough syrup,  because a Tylenol overdose doesn’t kill you right away, it kills your liver and your kidneys first, and it does it slowly.

So I sat there, dead tired, not because of heroin, or cocaine, but because of Tylenol. I sat there while a nurse roughly scrubbed down his arm and called him “dirty”, while she told him was going to die, while she rammed an IV needle in his arm, intentionally causing him pain. He bore it quietly. Her harsh words and her painful treatment of him. I bore it too, even while a part of brain was saying how wrong it was.

They keep the curtains open in cases of overdose, they also take all your clothing and belongings to make sure you don’t try to sneak out before your mental health is properly assessed.

This boy. This boy that the angry nurse purposely hurt. This boy used to bring me dandelion bouquets, used to sit for hours on my lap while I read him story after story, this boy who always tried so hard to fit in. This beautiful boy was still there in the hospital bed, with the sore arm, with all his belongings taken away. My little boy, who I could still occasionally glimpse in a gesture, in an expression, he was still in there.My boy, who’s brain chemistry has worked against him for the last ten years was still there, still trying. He has been fighting against a mind that contains beasts and horrors and realities only he can see. A mind, that when he became overwhelmed with its noise, he tried to quiet with drugs, and they worked. The drugs settled his mind, the drugs helped him make friends, let him feel like he belonged and was accepted. How can you blame him? He was 15, and his brain worked in ways that none of us could comprehend.

I saw that he was in pain, and I tried to fix it. I tried everything I could think of, sports, clubs, mentors, social workers, doctors, life coaches, tutors, psychiatrists, psychologists, peer groups, retreats, camps. I tried, but none of these worked as well as drugs and so the drugs won. I lost my boy by degrees, and he became the kind of patient a nurse thinks it’s okay to shame and to hurt. He became someone I didn’t know anymore. He became the young man in the hospital bed before me.

I stayed till 3:30am. I stayed while another mental health assessment was done. I stayed till I knew he would be safe and survive the night, and then I went home. It was 4am when I pulled into my driveway, when I slowly got out of my car and started walking through garden to my front door. It was 4am when I noticed the songs of the night birds, and while I’d would have rather have done anything but spend a night in hospital with my drug addled son, the bird songs, an owl hoot, and my dog waiting up for me were comforting.

He was in hospital for four days. Four days that I spent negotiating with insurance, four days trying to find him something, someone, somewhere to help him. Four days crying in my car where no one could see me, four days asking for help, four days not sleeping or eating enough, and this morning I drove him to the airport.

Today he flew across the country to a residential treatment center in California called Michael’s House. He says it’s incredibly beautiful there. They’ve taken his phone now, and I won’t be able to talk to him for 7 days, but he seemed hopeful and happy tonight, so I will hold on to that.

 *Lyrics by Bernie Taupin from “Someone Saved My Life Tonight”

about that homeless, mentally ill, and intoxicated man

Aside

Homeless Jesus by Timothy Schmallz

Homeless Jesus by Timothy Schmallz

Dear Well Intentioned Friend,

I know your intentions were not unkind when we talked the other day. I’m certain you had no idea the affect your story would have on me, and I’m somewhat ashamed I didn’t speak up more clearly at the time.

homelessOkay, here’s the thing. Your story? About your daughter’s dance class being threatened by a lone homeless man, the one where the instructors bravely hid all the girls (who ‘were practically dressed in bikinis’) in the locker room to protect them? The story where the lone homeless man who may have been intoxicated, who likely was mentally ill  (spoken with your voice lowered), had come into the lounge near the studio and sat down to watch the tv, you remember? Do you remember telling me how horrified you were, what danger these girls were in. Do you remember when you first described the man that I said, poor thing, he was probably just looking somewhere safe to rest?

Here are some things I didn’t tell you. I have worked with homeless people for the last ten years. Yes, many are mentally ill, many are alcoholic or addicts or both. All of them suffer greatly. All of them are human beings, who love and are loved by someone. I didn’t point out that mental illness and substance abuse are medical illnesses, just like cancer, or diabetics. I also didn’t mention the reason many of them are homeless is because of inadequate resources to treat these disorders,and the tremendous negative stigma that goes along with being homeless, with being an alcoholic, with being an addict.

At one point while you were describing in great detail how horrifying and dangerous this man was, I did manage to quietly say, just like my son. I don’t think you caught my meaning. I don’t think you understood that what I was saying was that my son is homeless, that my son is mentally ill, that my son is an addict, that my son has curled up in all sorts of places trying to get some sleep, some comfort. I don’t think you realized that while you talked about saving these girls from this threat, all I could see is the countless cruelties that the homeless, mentally ill suffer, that my son suffers. The diseases themselves and the heartbreak they cause to families are bad enough, but the stigma that well intentioned people attach to them and then use as a justification to treat them badly, as something less than human, and something not worth compassion, or love or comfort, the stigma is the worst of it all.

Change mentally ill to someone with cancer, with diabetics, suddenly it seems horrifying that someone suffering from cancer, or uncontrolled diabetes would be ostracized, would be seen as a threat to children.

Eventually all I could see was someone treating my son with the horror and disdain you very eloquently described, all I could see was the pain and the humiliation he has suffered. All I could see was my little boy being threatened, and there was nothing, absolutely nothing I could do to save him. All I could feel was all the pain and the heartbreak of the last several years as I fought to keep my son sane, sober and safe. You see, my well intentioned friend, I too am a mother, a very protective one, and I do understand the overwhelming desire to protect my children. My daughters took dance when they were young, I did my time sitting in studios, going to recitals, I do understand that part, to this day I would do anything to keep them safe. I also love my son with the same intensity, and I have done, and still do everything I can to protect him. Sadly with his disease part of doing what’s best for him and my daughters is to let him hit a bottom so he can hopefully one day come back to me.

I couldn’t tell you any of this. All I could do was to cover my face to hide the tears and run away. When I got to my car I sat for a very long while until I stopped crying and could drive home.

The other thing I didn’t tell you is what I may have in common with the homeless man, I’m an alcoholic. I was raised by one and am related to several. The disease runs rampant in my family. I’ve been told to say I’m a person in long term recovery, meaning I’m sober and have been so for quite some time. I don’t generally tell people this, because unlike, say cancer survivors, there aren’t any coloured ribbons, or fun walks for alcoholics or addicts, even the clean and sober ones. People don’t look at you as someone who has fought – and remains constantly vigilant – against a chronic and deadly illness, and survived, people see a drunk, an addict, someone who has a flaw in their moral character, someone who cant’ be trusted, someone you can’t leave your children with (yes, I have been at the receiving end of all these attitudes) people look at you as something that is less than normal people. That’s why I don’t generally share that about myself. That is also why when you told me about the homeless man the first thing I felt was empathy for him, and the pain he must feel at fear and loathing that he experienced in your daughter’s dance studio, and likely just about everywhere else he goes.

I didn’t tell you any of this, because these things are usually too raw for me to say out loud. These things have brought judgement and negative stigma on me and my family, and some days I’m just not up to saying out loud that this is wrong. This is so very wrong. That it is not okay to view people as less than. No is less than anyone else. I think if people could get that straight in their heads the world could be a more compassionate and beautiful place.

So, maybe, next time you see a homeless person, someone who is mentally ill, intoxicated,maybe, you could let some compassion enter your viewpoint, and not let fear guide your thinking and actions, maybe you could lead with kindness and compassion, just a little at first. Or maybe you could, just for a moment, reexamine the way you view the homeless, the mentally ill, the addicted, the alcoholic. Maybe that could be a start.

life with addiction, mental illness and stigma

It started about 9 years ago with a handwriting tutor.  In grade three Graham’s handwriting was terrible. I found him a handwriting tutor and drove him there three times a week until we realized it wasn’t having any effect on his handwriting. Over the next year it became clear it was something more than sloppy penmanship, it was like his brain was going way too fast for his hand to keep up. I found him a psychologist, had him tested and to absolutely no one’s surprise he was diagnosed with ADHD, and so started a long and inglorious period where I became an expert on 504 education plans, communicating with teachers, school social workers, and psychologists. I learned everything I could about the –constantly changing – prescribed medications and while I was at it I tweaked his already pretty healthy diet in an effort to improve his concentration and focus. At some point he told me he was seeing colours that weren’t there, I had his eyes checked – all normal, and chocked it up to an intelligent and creative kid’s imagination.

 During his middle school years I got even better at working with his teachers and school staff. He now had an organizational counselor who met with him a few times a week in an attempt to keep him from losing track of pretty much everything. I worried about him not fitting in, but I told myself a lot of kids have trouble in middle school and end up just fine, in high school things would be better, I was sure.

I can’t remember when he first told me he heard voices, but it was somewhere in his second year of high school. Again, I attributed it to a very active imagination and by this point his relationship with facts was off and on, so I didn’t pay too much attention to it. In high school there were many more pressing things to worry about. It wasn’t easier, it was harder, so  much harder. I got to know a lot of teachers, became very close to his guidance counselor – who eventually memorized my phone number from the sheer volume of calls he had to make – the school social worker – who still hugs me when she sees me, and I got to know, quite well 3 separate school Deans.  He struggled through school, painful to watch because he was so bright, just not in a way the he could show. Things seemed to be getting better the summer before his junior year and he was hanging with people and going out and seemed generally happy.

And then his junior year. Small things at first, some dishonesties, stories that didn’t quite seem to make sense, but he had friends and seemed to be enjoying himself, so I told myself. He was seeing a ‘very cool’ social worker who kept assuring me that everything was fine, and that I needed to back off and ‘give him some space’. Then I found a pack of cigarettes. I was appalled. This was the worst thing that I could imagine, how could a child of mine start smoking, where had I gone wrong? I got over that soon enough. Shortly after the cigarette discovery, I found out he had been selling his ADHD drugs at school and buying marijuana and cigarettes with the money. I found out he’d been stealing from just about everyone. Suddenly the cigarettes didn’t seem so bad. His new friends? Customers. He had found a way to deal with his social awkwardness.  His ‘very cool’ social worker? He knew about everything, all the drugs, the dealing. He didn’t seem so ‘cool’ anymore. All the signs pointing to something more much more serious mentally going on he attributed to me being an over protective mother, and he told me so several times.  I stopped taking him to that social worker, but some serious damage was done, from that point on Graham blamed me for taking away ‘the one guy who understood him’ and wouldn’t cooperate with any new counselor, or social worker that I found for him. Graham still talked about the voices, but at this point I assumed everything he said was questionable – and generally this was true.

His behaviour became worse and worse. One night after 11pm he jumped out his bedroom window and ran

off into the night, just because. Catherine and I were each driving around for over an hour trying to find him. It was surreal. Eventually he showed up and we never did figure out why he did it or where he went. Within a few weeks his behaviours became concerning enough that I called the police, starting what was to be a long and complex relationship with Naperville Police Department and my son. We got lock-boxes and locked up everything of value in our home – money, medications, jewelry. During all this craziness I was taking him to a recommended drug education and prevention program. That was a colossal failure, and two drug counselors later, residential rehab was suggested. I drove him to the facility in Rockford and managed not to cry until after I was in the car coming home alone. For the next 35 days I was in constant contact with the facility and the school to participate in his recovery and to keep him from failing his school year. I drove back and forth twice a week. The nights I was gone my daughters were on their own. For the next year Catherine took over driving her sister to appointments because I couldn’t.

Still we were confident that we had acted quickly enough and effectively and soon enough Graham would be well.

 

After he came home he started an Intensive Outpatient Program, four nights a week for 4 hours in Downer’s Grove. Back and forth I drove, again, the girls were left to fend for themselves. We did this for 11 months. I was also taking him to NA meetings most nights. Our life revolved around Graham his recovery program, his meetings, and his school work. I hired a private tutor and a life coach to try and save his school year. There wasn’t room for much else. He still blamed me for taking away his first ‘cool’ social worker, and wasn’t working well with anyone.

He started his senior year – having passed his junior year just barely – with plans of doing well and finishing strong (a tag line from his life coach). I got to know yet another school Dean, and we had more unpleasant adventures.  He still talked about the voices and this time I decided to see if there was more than addiction going on in his brain. More doctors, more tests, much more money, more arguments and appeals with insurance companies and we ended up with a sobering result. Graham has bipolar disorder. By this time we had taking him off all ADHD stimulant meds because of their negative effects in an addictive brain and although he had been mostly cooperative with rehab and all the doctors and testing he decided the meds for the bipolar didn’t work and he stopped taking them.

Before the Christmas break it was pretty clear that he couldn’t continue at his school and he was told he needed to attend an alternative school. He wasn’t pleased, but he adapted. A couple of months into that school, we were told he couldn’t continue to attend, that his behaviour needed a more controlled environment, and so with tremendous resistance he was sent to another very structured alternative school – where the staff “are trained to restrain” I learned during orientation.  He managed to graduate from high school. He managed this with tremendous support from countless professionals in the schools, in the recovery and medical communities, and from his family. Our lives continued to be dictated by his needs.

The day of his commencement arrived and I couldn’t believe he would actually graduate. I thought we’d done it, we’d won, from now on it would be easier, the worst was over. I was so grateful and relieved and so very proud of him. He looked so proud in his gown, I don’t think he thought he would ever graduate either.

 Sadly it was after he graduated that things got much worse.

He turned 18 right after graduation and was legally considered an adult. By the end of June we had to do the unthinkable, we told him that because of his behaviour he could no longer live in our home. The lying, stealing and erratic behaviour was more than we could bear. We gave him 45 days to change his behaviour, participate in his recovery, to start to take his medication, and at the end of the period if he had not moved forward even slightly, he would have to find somewhere else to live. To come to such a decision was excruciating, to follow through even when his behaviour had only deteriorated was worse. For the months after he moved out I was felt I was the worst parent ever. How on earth did we get to this point? It broke my heart to send him out – even though I spoke with counselors, his NA sponsors and several professionals about how to navigate this with firmness, boundaries and with compassion. That he was loved was never in question, it was the behaviour we couldn’t tolerate. There were late nights where he tried to break into the house long after I should be asleep and I would sit curled up in my room just listening to him try to get in through a locked window. We stayed in contact, sometimes I would hear from the police, sometimes from one of his friends. Near the end the police were looking for him, but because he was now an adult they wouldn’t tell us what for.  In the fall I received a phone call from one of his friends saying that he had tried to walking into traffic to kill himself and that he had been taking to Lindon Oaks. This was his second suicide attempt – the first happened at home when he swallowed a bottle of pills. There was no warning for either, they seemed to be completely impulsive. He was in ICU for the pills and straight to Lindon Oaks (LO) for walking into traffic.

This fall we started the cycle of in-patient admissions and outpatient programs. After his discharge from LO he moved back in and agreed to take medication and participate in treatment. There was more driving back and forth to Outpatient programs and to meetings. There were 3 more admissions to LO, more outpatient programs after he was discharged. He was diagnosed with rapid cycling Bipolar Disorder, an Impulse disorder, Anxiety, and with Psychosis Not Otherwise Specified. It was decided the suicide attempts happened during manic phases, which is common with Bipolar disorder. At the beginning of December I received what was becoming a very familiar call – Graham was being discharged from the outpatient program and was recommended to a higher level of care – residential specifically. I found him a bed in Chicago and drove him in on December 5th to his second residential rehab – which also specialized in dual diagnosis patients. While we were waiting in the lobby he pulled the advent calendar from his bag and ate his chocolate for December 5 – this, more than anything else broke my heart. He stayed there till the end of January with one 8 hour pass for Christmas day. While he was on a waiting list for a spot in a halfway house, I got the all too familiar call saying he couldn’t stay at Gateway anymore and they had sent him to the psych ward of Mt Sinai hospital. He had been planning a suicide attempt. Much scrabbling and a many phone calls later I found a halfway house for him in Elgin. During this time I was driving to Chicago, and in Elgin every week to participate to support him and make sure he was receiving acceptable care.

During the two months at the halfway house he had three separate psych hospital admissions, all for voices and panic attacks. He was compliant with his medications by this time, but it’s a difficult thing to balance and it can take years to find an acceptable balance between effectiveness and acceptable level of side effects. Less than a week ago I got the call from the halfway house, he could no longer stay there and was being discharged within the hour. Graham has relapsed on marijuana and LSD. From there he found his way to what would be his 6th or 7th emergency psych hospital admission. After that admission I drove him to another Gateway residential rehab in Lake Villa. Six days into to that he was back in hospital, the voices were telling him to kill himself. After a day of negotiating Gateway agreed to take him back, and within 6hours of returning he was kicked out, this time for good, the voices had told him to harm his roommate. After this hospitalization I had no more ideas or resources. When he was discharged from hospital and they called to see who was picking him up I had to tell them no one was coming, to discharge him to the homeless shelter. While we was at the Lake County shelter I helped him apply for Medicaid and started the process for Social Security Disability (we got an official rejection letter before we even finished the first application). These could both be long processes. He went back into hospital last week and was supposed to have a bed in a state run rehab, but at the last minute they turned him down, and he was discharged once again into another homeless shelter.

In the last 3 years he has had at least 8 emergency room visits, 10 admissions to hospital – a couple of months total time, 1 ICU stay for 2 days, 4 separate outpatient treatment programs – totaling 16months, 3 residential programs totally, so far 4 months. You can imagine our insurance horrors and staggering bills we owe to many separate institutions. He has also been homeless and lived on the street or in various shelters. He has slept on the street, in people’s garden sheds and the occasional friend’s couch. The time at friend’s houses never lasts long, his behaviour makes it too difficult for people to accommodate him for long.

Graham has an illness. A chronic, debilitating, life threatening illness (and no, I’m not being dramatic, we have been to funerals for children with these diseases). Mental illness and addiction don’t have ribbon campaigns, there are no fun runs, no fundraisers where everyone feels good about helping out.

During the months and months of time he spent in hospital, during the last 2 ½ years of our life Graham received 2 cards – total. He had 2 visitors who were not family. During the months I had to leave my daughters to fend for themselves it felt like there was no support from our community. We were hurting, we were so very tired, and we were on our own.

 

I write a blog. Often I write about what living with a person with addiction and mental illness is like. I wrote about how no one brings you lasagna when your child is an addict. I write quite a bit actually because I am tired of the stigma and fear associated with these illnesses. If Graham had a medical illness with corresponding amounts of hospital admissions it would have been a different experience.

There have been acts of kindness and support which helped tremendously. A friend showed up one day with two books she thought I would enjoy, and batch of homemade cookies and then just hung out for an hour and chatted. A couple came by around Thanksgiving and raked my yard and brought us pumpkin pie. During the 11 months of driving to Downer’s Grove 4 times a week several church do gooders helped out with some of the driving. Some of Graham’s young adult friends from camp mailed him homemade cookies, and 2 even went through the multiple and inconvenient steps to spend an hour visiting with him while he was in Lindon Oaks for the last time. I will never forget these acts of kindness.

Some of the things that have not been helpful :

  • ask if there is anything you can do, and then do nothing.
  • ask if there is anything you can do, and not mean it a word of it.
  • ask if there is anything you can do, and then gossip.
  • ask if there is anything you can do while wearing a fake smile and (literally) walking away (body language – it’s not always subtle) – yes, this has happened, a few times.
  • tell me “I did something right” because, at least, my girls are doing well.
  •   If you think addiction or mental illness is a moral failing, that’s fine, it really is, but please, I don’t need to hear about it

What does help

  • Treat us like a family with an ill family member, we are going through many of the same things families of

people with cancer go through, except we also deal with the negative stigma associating with mental illness

  • be a benevolent witness to the grief and the pain, this doesn’t mean fixing anything, it just means bearing witness with compassion and without judgment.  And I do mean grief – I grieve for the healthy son I thought I had, for the life I thought he would have. The hopes and the dreams I had for him will never happen, they have been replaced with much smaller more basic hopes, like I hope he survives this, I hope he finds someway to be happy with his life.

Sue Monk Kidd has a passage in her latest book – the older sister who has resigned herself to never marrying is watching her younger sister get married. She describes the feeling like walking into an empty room that you forgot was there. In the room you had planned so many things, but now it is essentially empty. It’s not a room that you visit often, and you don’t dwell there when you do, but every now and then you find it, and you remember what you had hoped it would be. When I hear about or see Graham’s old friends, and his peers I step into that room. I see all the potential that’s gone, I see just how lost my boy is.

 

  • If nothing else, be kind to my girls, they are marvelous, courageous and loving people who should not have to go through any of this

These diseases have, on one hand, devastated our family, and on the other brought us closer and made us stronger. I have sat up countless nights curled up certain that I cannot bear this a moment longer, that I have nothing left to give, that I have done everything wrong, that my life and my children’s will never be normal, will never be without this pain. And yet, each morning I get up and go through another day.

Days that are for the most part, happy and are filled with love. What I have learned is just how resilient people can be, how even when faced with disappointment over and over again, we still find ways and things to hope for. I have learned that adversity and pain can make you softer and more compassionate.

Poetry also helps, this poem in particular by Oriah Mountain Dreamer

 The Invitation

It doesn’t interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart’s longing.

It doesn’t interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn’t interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life’s betrayals or have become shrivelled and closed from fear of further pain.

I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.

I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.

It doesn’t interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.

I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, ‘Yes.’

It doesn’t interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.

It doesn’t interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.

It doesn’t interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

 

 

just in case you forgot he is a person

 

 

rules from the nuthouse

image

The first rule of the Nuthouse is no one talks about the Nuthouse.
(they give you papers to sign saying the Nuthouse is nobody’s business)

 

The second rule of the Nuthouse is that you can’t call it a Nuthouse when Anyone Normal is listening, but you can call it that very quietly in a corner of your mind while your teetering on the edge of completely inappropriate laughter.

 

At night the Nuthouse is guarded by a small woman with a platinum blonde beehive and bright red lips named Jean. If you want and if she’s not busy, you can chat with Jean, and she will tell you all about her son and his tours of duty, his divorce, and the Polish woman she hired to take care of her mother after the strokes, and how she was sometimes mean to her mother. Jean will ask you the secret ‘password’ that shows you know someone in the Nuthouse, and if you get it right you get bright yellow Visitor’s badge so everyone will know you are visitor and not a patient.

Jean will always be polite and basically cheerful,because the third rule of the Nuthouse is everyone is happy, or at the very least, smiling, pleasant, and healthy looking. 

 

Once you say goodbye to Jean, you wait with other people who got the passwords correct and have bright yellow Visitors badges on until someone efficient and smiling and carrying a clipboard comes collect all of you and escort you through the sets of doors that lock as you pass them.

 

The fourth rule of the Nuthouse is only people with the Special Cards can open the very sturdy doors.

 

To visit at the Nuthouse all pockets must be emptied, cell phones and jackets turned over to the very polite and efficient staff. If you bring anything for patients the polite and efficient staff will inspect it and if it is acceptable, bring it to the patient. You cannot keep the bag in the Nuthouse, also you cannot have drawstrings in your pants or shoelaces in your shoes.

 

You can visit for an hour at the Nuthouse, sometimes twice a day, but only if you know the password. When you visit be sure you don’t laugh too loudly or the polite and efficient staff will come and ask if everything is okay. The fifth rule at the Nuthouse is everyone is calm during visits.

And then it is time for you to go home, and you wait for the person with a Special Card to escort you through all of the sturdy doors, and only when you make it outside, and that tiny part of yourself that wants to laugh until you cry is poking at your sleep deprived brain with a sharp stick, do you finally mutter out loud “The first rule of the Nuthouse is….”  

and on the way home they will play Brain Damage on the radio because the universe is not without a sense of humour.