Tuesday, December 01, 2015

not in never falling

A repurposed necklace, the charm is mine, the cord was part of a gift from someone I loved (the original charm, it went the way of the love, it's gone)

I can’t find the right words to describe this. This feeling that comes when I least expect it. The feeling, as Rilke would say, of pushing through solid rock.

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)

There's a hollowed out feeling when I think of you, there's sadness and anger too, but mostly it's  hollow.  I can usually distract myself, with sleep, with TV, with work, with art, with words, with movement, with anything handy. The thought of actually sitting still with myself still overwhelms me, so I move, or I sleep. When that doesn't work, when you bubble up unbidden, on those days, I run the same circles in my head, the same tight circles that loop back on themselves and spin faster and faster.  I tell myself I've been an idiot once again for loving people who leave, for banging my head and my heart against your rock wall, constructed to keep people like me out. I sometimes think a different version of me might have been enough, could have make it through your emotionally unavailable barracks, but that's not true. Occasionally I feel like throwing a rock,  a brick, or smashing a plate, perhaps that would at least get your attention. I won't, but the thought remains attractive, if only for the moments I pick it up and hold it, pass its weight back and forth between my hands.

You huddle in, becoming
the deathless younger self
who will survive your dreams
and vanish in surviving.
- Self and Dream Self excerpt, by Les Murray

It's not just you, of course, it's been a brutal fall. Somedays, all of its hurts lay on top of each other and weigh me down. I thought we were connected, but we weren't, that was me telling me stories and you telling me your well practiced lies of convenience. That level of connection, of honesty, was the last thing you wanted.  At my core sits a small hard bit of certainty that if I love, you will leave. My head and my heart know somehow this is not correct, but my bones know that it is so.

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything 
That is how the light gets in.
- Leonard Cohen

There isn't a light coming in, at least right now. It's cold and it's dark and it's empty. He  also said "The Heart beneath is teaching / To the broken Heart above", maybe that's what this is, healing. 

Into the Pit - source David I.

I don't think you've ever allowed yourself to be opened, to let someone break your heart, your shell is too hard, too thick, too well formed to allow that to happen. Or maybe you did, once, and then swore never again, and that is why you remain frozen, hard, hidden and clinging to that past trauma that you will never release. You turn your focus on yourself, withdrawing into your shell if anyone gets too close, only pretending to connect, to engage, to care. If that doesn't work  you manipulate, gaslight, play controlling games, run tests, that will always set you up as the winner. You don't know how to live openly, you don't know what it is to fall, and to rise again, only to withdraw and hide. There is no glory for you, only more hiding, more controlling, more walls.

Our greatest glory is not in never falling, but in rising every time we fall

I do know the feeling. I once had walls. They had a hollow sound behind them, but they were solid. With them in place I could play happy, charming, funny, but was just acting. Taking the walls down was excruciating, and also exhilarating; still, there are days I wish I still could hide behind my walls.

And so, I've fallen, and risen, and fallen again.  I've fallen into this mess that I have to pass through (not go around, not go over, or go under). I will, pass through this. 

Ten Things I Hate (Love) About You / The Taming of The Shrew

10. The cold way you looked at me (the warm affection in your eyes).
9.   The way you'd protect yourself from me (the way your arm moved to protect me).
8.   Waiting hours for you (the way you greeted me).
7.   The way you made me cry (you made me laugh).
6.   Your lies of convenience (your lies of flattery).
5.   The part of you that understood me and then left  (the part of you that understood me and seemed to want to stay).
4.   The drive in (sneaking into movies).
3.   The plans you never meant to do (the future plans we talked about).
2.   Waiting for your call (your goodnight texts).
1.    Blowing cigar smoke in my face.

The truth is my struggles, my demons, all come from, and aim directly at the very things I am most insecure of, mainly not being lovable, being abandoned, and when they strike up the band and start to play my thoughts and emotions get sucked into that spinning wheel where no good ideas ever emerge. Don't believe everything you think, don't believe everything you think especially when you are tired, hurt, raw, emotional and generally broken up inside. Those are the times when throwing the rock, or smashing the plate seems like the best idea ever. Those are the times where you, as Pema Chödrön says, have to lean into the sharp points, the pain, and the discomfort, even when, especially when, this makes it hurt even more.

Which means this won’t last forever.  I will emerge.  I might even grow a little.  Maybe not today, today is pretty awful. Today I am pushing through solid rock. Maybe another day this won’t be so heavy. At some point you do free yourself, and take your power back – flaws and all. Someday.

Monday, November 23, 2015

eulogy for my brother

“He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last forever: I was wrong."
-W.H. Auden, Funeral Blues
To paraphrase Emily Brontë, my love for my brother was like the eternal rocks beneath, not always visible, not always a source of delight, and no more a source of pleasure than I am to myself, but necessary, it resides in my bones, not just in my heart, or my thoughts, it lives in every cell in my body. Whatever souls are made of, his and mine are the same.
To say John was brilliant, or merely complex would be an understatement. He was so many, many things, - to paraphrase myself - a brilliant creator and solver of puzzles, a talented player and lover of music, a gifted conceiver and expresser of visual arts – be they paint, pencil, wood, clay, or words, and an inspired and - sometimes overly - creative chef.
He created. He created games, puzzles, paintings, delicious food. He created a home for his daughters.
He made you laugh.
John would have had you in stiches by now. He was the funniest person I’ve ever known. Brilliant, witty, irreverent and always ready with a joke or amusing observation.
Everyone in this room has laughed, and not just once because of something John said or did. He was the original photo-bomber, he was always ready to drop to the conversation lowest common denominator, which generally involved loud bodily functions, burping, farting, burping and farting together, burping songs, making fart noises in his arm, in his arm pit, and then drawing everyone in.
20151019_144255-01When my son first started struggling he sent him homemade Hero cards, featuring Greek, Roman God, with points and skills assigned. Each and every one said “Kicks Butt” and Hercules “Occasionally goes BESERK” The last card he sent was the Uncle John card. The Uncle John Hero was described as “The Sharpest Spoon in the drawer, fancified dancer, can kick his own butt – plus that of Uncle Ruth’s, yep, that’s what he called me when he wasn’t calling me Big Nose. His Attack number was 42, a Douglas Adams reference I’m sure, His Thoughts were listed as “Not Often”, his Symbol was “Messy Hair and Stinky Socks” – although his stinky socks, as many of us knew could be better listed as a Weapon. His special skills were “Sarcasm and Burping” – okay, that part was pretty accurate. The card was quintessentially John, from the stinky socks to the self deprecating humour. he also sent Graham a rubber chicken, a series of original Canadian comic books, still in their protective covers (a state that did not last long), and a hand sewn teddy bear.
He was generous. With his love, with his art, food, with everything he gave openly and freely.
Picture John made for (of) me, 2003
Picture John made for (of) me, 2003
He also called me Big Nose, even made me a little drawing of Big nose. I called him No Chin. It was a special sort of endearment between us. He also called me Bruce, well my whole family calls me that, between that and the Uncle Ruth is surprising I don’t have a gender identity problem. At my wedding he gave a brilliant speech – it included Ode to a Grehian Urn, my driving skills, my applying makeup while driving skills, my applying makeup, singing to the radio, while shifting gears, driving skills – you get the idea. He was brilliant. He was also charming, and a beautiful person all the way through.
Where I have been described as feisty, stubborn, Little Miss Splendid – yes, they gave me that book, John was the sucky second child, the one who charmed his way through things. I would dig my heals in and cross my arms – metaphorically and often literally when faced with obstacles, John used charm. It made me crazy. One fateful year when I was visiting from school I came home to a little brother who was now taller than I was. It was a moment he had been waiting for his whole life. In the den he wrestled me to the rug, sat on me with his hand over my mouth and the poked and tickled me all the while yelling “mom!!! Ruth’s hurting me!!” Needless to say by the time my mother arrived he had jumped back and assumed an injured stance in the corner looking beseechingly at our mother, who may or may have believed him, but certainly played along. That is how my brother rolled. Many of the times I have laughed the hardest, the stuff coming out your nose, tears coming down your cheeks, the immanent danger of peeing your pants kind of laughter, those laughs 20151019_152813-01originated with my brother.
Which makes his ending all the more tragic.
A few months ago, a friend of mine died. He was in his 90s, had lived a full life, was productive right till the end, and then one night he died peacefully in his sleep. We took comfort in that. The rare times we think about our own deaths, this is often the one we want, the good death, the peaceful, after a long well lived life death. This is what we want for ourselves and our loved ones. No one wants to die like John did, no one. There is nothing comforting about his death. It is utterly heartbreaking and tragic. It is unfair. It was wrong for him to die as he did.
The thing about a brain disease, which is what John died from, a brain disease called alcoholism, the thing about it, is that it takes away the personality, and then it takes away the person that you knew and loved. We lost John, but before that he lost himself. That guy, the one who made us laugh till we cried, who sang to us, read to us, who made wonderful art and delicious food, that beautiful person, was lost to a disease that affected and distorted the way he thought, the way he saw the world, and mostly the way he saw himself.
John felt things very deeply, maybe too deeply. One of my first memories of us is me wrapping him in a blanket during a sand storm on a beach. I have no idea what the context of the situation was, what I remember is wanting to protect my brother above anything else.
I couldn’t protect him from this. None of us could. There was never something that one of us did that caused this, there was nothing that we didn’t do that would have cured this, and there was never a way anyone else could have controlled his disease. Cunning, baffling and powerful is how alcoholism is aptly described, and it is, it is all of those things. It took our father, and it took John, both before their 50th birthdays.
John’s behavour for the last several years was baffling, it was heartbreaking. He pushed us away. His brain, his thinking was so distorted by this disease that the only way he could cope was to continue to try and numb his thoughts and feelings. It never meant that he loved any of us less. He loved his family, his daughters and Tamara were his life. That never wavered, not for a instant. He loved us, all of us, and in the end that’s what we need to hold on to. As painful as this has been, hold on to the times he made you laugh, the times he showed his love to you, the times he was his exceptionally lovable and goofy self. It won’t happen today, or maybe not this year, but start to let go of the painful memories, and hold on instead to what you loved about him. Remember him as someone full of love, caring, stinky socks and really terrible jokes. His personal favourite was "you know the corduroy pillows, the ones that are making all the headlines?"
“I myself am made entirely of flaws, stitched together with good intentions.”
― Augusten Burroughs
“He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last ------
I was right. Love is the thing that endures. Love is what we have left of John, love and some pretty wonderful memories.
12108267_10207722033310124_8293890433605817967_nHang onto those, and hang on to each other. He loved us all, what we have to do now is continue to love each other, to create in what ever way we express ourselves, eat good food, play games, solve puzzles, and make the odd fart or burping joke.

Wednesday, September 23, 2015

dear world, just in case you were wondering

For the past few years I've done this thing called 10Q, you answer a question a day for 10 days and then your answers are stored for a year until it's time to answer another 10 Questions. This year I'm making my intention, the bonus question 11, public. This is what I want, and this is what I will be working towards in the coming year. You don't even have to wish me luck, because I fulling intend to make this happen.  Cheers!!
My Intention for my 52nd year: 
I will be living my own home, with studio space, a front porch and a screened in deck. There will be a spare room for my kids to stay in whenever they need to. There will be lots of light and it will be filled with colour, pieces of art, books, my personality. There will be water near by, and a small, but very beautiful garden that attracts humming birds, honey bees, and butterflies.
I will be in a loving a meaningful relationship with a man who thinks I am the best thing that ever happened to him. He is witty, handsome, kind, intelligent, funny as hell, financially secure and loves animals. He is also organized and balances, supports and grounds me. We will travel a couple times a year, get to local theatre, galleries and interesting restaurants regularly, but also really enjoy just hanging around with each other doing nothing.
I will be making more than enough money doing work that I love. I will continue teaching yoga, managing and developing other teachers and constantly growing my own practice. There will be travel involved with my work. I will continue to write and will be published. My art will find it's audience and I will create bigger and more daring works of art. I will be exploring different ways to expand my creativity, including improv and other forms of expression.
I will be healthy and strong and continue to have a loving community of friends and family that love and support me. I will have made peace with my mother, my brother and my step-father.

Sunday, September 06, 2015

Puedo escribir los versos más tristes esta noche

Puedo escribir los versos más tristes esta noche
Puedo escribir los versos más tristes esta noche.
Escribir, por ejemplo : 'La noche está estrellada,
y tiritan, azules, los astros, a lo lejos'.
El viento de la noche gira en el cielo y canta.
Puedo escribir los versos más tristes esta noche.
Yo la quise, y a veces ella también me quiso.
En las noches como ésta la tuve entre mis brazos.
La besé tantas veces bajo el cielo infinito.
Ella me quiso, a veces yo también la quería.
Cómo no haber amado sus grandes ojos fijos.
Puedo escribir los versos más tristes esta noche.
Pensar que no la tengo. Sentir que la he perdido.
Oir la noche immensa, más inmensa sin ella.
Y el verso cae al alma como al pasto el rocío.
Qué importa que mi amor no pudiera guardarla.
La noche está estrellada y ella no está conmigo.
Eso es todo. A lo lejos alguien canta. A lo lejos.
Mi alma no se contenta con haberla perdido.
Como para acercarla mi mirada la busca.
Mi corazón la busca, y ella no está conmigo.
La misma noche que hace blanquear los mismos arboles.
Nosotros, los de entonces, ya no somos los mismos.
Mi voz buscaba el viento para tocar su oído.
De otro. Será de otro. Como antes de mis besos.
Su voz, su cuerpo claro. Sus ojos infinitos.
Es tan corto al amor, y es tan largo el olvido.
Porque en noches como ésta la tuve entre mis brazos,
mi alma no se contenta con haberla perdido.
Aunque ésta sea el último dolor que ella me causa,
y éstos sean los últimos versos que yo le escribo.

Tonight I can write the saddest lines.
Write, for example, ‘The night is starry and the stars are blue and shiver in the distance.
The night wind revolves in the sky and sings.
Tonight I can write the saddest lines.I loved her, and sometimes she loved me too.
Through nights like this one I held her in my arms.I kissed her again and again under the endless sky.
She loved me, sometimes I loved her too.How could one not have loved her great still eyes.
Tonight I can write the saddest lines.To think that I do not have her. To feel that I have lost her.
To hear the immense night, still more immense without her.And the verse falls to the soul like dew to the pasture.
What does it matter that my love could not keep her.The night is starry and she is not with me.
This is all. In the distance someone is singing. In the distance.My soul is not satisfied that it has lost her.
My sight tries to find her as though to bring her closer.My heart looks for her, and she is not with me.
The same night whitening the same trees.We, of that time, are no longer the same.
I no longer love her, that’s certain, but how I loved her.My voice tried to find the wind to touch her hearing.
Another’s. She will be another’s. As she was before my kisses.Her voice, her bright body. Her infinite eyes.
I no longer love her, that’s certain, but maybe I love her.Love is so short, forgetting is so long.
Because through nights like this one I held her in my armsmy soul is not satisfied that it has lost her.
Though this be the last pain that she makes me sufferand these the last verses that I write for her.

I loved him. A flawed and messy love that was my best. An open, vulnerable love that left me open, exposed, and for a while, shattered. I thought maybe he loved me just a little, just for a few hours, but it was his lust I had, never his love. I never said the words aloud, just in my head, when I looked at him, when he touched me, when we held each other. I thought I could have looked at him forever. 
I no longer love him, that's certain, but how I loved him.  In the end, that is what mattered. What mattered is that I loved, not that he did not.  

This is the last pain I will suffer, and the last lines I will write for him.

Wednesday, June 04, 2014

It's Four O'Clock in the Morning, Damn it*

At 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"

Thursday, May 08, 2014

about that homeless, mentally ill, and intoxicated man

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.
I also publish here http://emmaandtoad.wordpress.com/

Thursday, May 01, 2014

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 gets me through some of this, 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.