leaving

“It is so hard to leave—until you leave. And then it is the easiest goddamned thing in the world.” – John Green

The leaving, the letting go, that part is easy.

Approaching letting go, entertaining thoughts of leaving, that part is excruciating. When faced with loss, the loss of a person, of a lifestyle, a job, a preconceived idea of ourselves, when faced with letting go, we cling. Forget the platitude – I cling. Somewhere deep inside I know, I know that nothing is permanent. I know that I will age, that I will suffer illness, that people I love deeply will leave, may die before me, that material wealth can be lost, that my love may not be reciprocated. I know all of this,  and I cling even more.

“If she is to love life and freedom and be brave then she must learn to let go. To see beauty without clinging to it, to feel pain without holding it hostage, and to feel love without worry of losing it.”
― G.G. Renee Hill, The Beautiful Disruption

tumblr_n5i9nvFFkC1qbhueno2_r1_250-2Right. That part. It does make a lovely quote, but to quote Ron Weasley, Bloody hell!

The times in my life that have been the most painful, the times I thought I could not possibly survive, these were the times right before I left, before I finally let go. These were the rock bottom times, the times where I dug my fingernails in and clung desperately to the idea, the person, the thing that I thought was essential for me to survive. None of them have turned out to be essential for my survival, so far.

The Journey  by Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice–
though the whole house
began to tremble
and you felt the old tug
at your ankles.
“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do–
determined to save
the only life you could save.

I love this poem. It also make me a little angry. I want to say journeys like these don’t happen all at once. That you make this journey, that you make your own way in degrees. That, unlike the movies where the leap of faith gets made – generally to a profoundly moving musical score – and then life gets tied up in a neat bow, becomes perfect, and the credits roll as a glint of a tear forms in your eye and you wonder why can’t you just figure your shit out. Unlike that, in life you have to keep making the terrifying next step, you have to continue to make your journey. It gets easier, but it never gets easy. I have started on this journey many times, and to varying degrees, got pulled part way back by the cries of “mend my life!”, or turned back myself when the storm seem too much to endure.

23SUMMERFILM1-facebookJumbo

Trainwreck – Loved this movie – and look, everything is wonderful at the end, with great music and even cheerleaders. Bloody hell…

20151218_184853-01.jpegIt seems odd to be writing about this as I sit in front of our Christmas tree, surrounded in over 20 years worth of decorations, of traditions, of stories, of memories. The ornaments my friend Cathy and I made the last Christmas before she died more than 15years ago, the baby’s first Christmas ornaments for each of my children, beautiful things my mother made, the gifts from my favourite Aunt, the handmade gifts and ornaments from my children. All of these carry their own special weight, and this is the last year they will all be together in one place. This is the letting go, the leaving. This is the final Christmas in this house, in this town even. All our beautiful things will be divided, things I will keep, things that will go to each of my children, things that belong with their father, and things I can give away to add meaning to other family’s lives.

Twenty years ago, when my first daughter was 2 1/2 years old, my son, a 6 month old baby, and my youngest not yet born, we received a beautiful hand carved horse named Hilde. Tonight, after years of sitting quietly, Hilde went to live with another family with three young children who will love and play with her. Letting go of that stage of my life. I’ll keep the pictures, many of the books, but it is time to move on.

Burning-Man-2015

Alexander Milov’s sculpture “Love” from this year’s Burning Man

Milov’s  sculpture silhouettes rigid, back to back  wire adult figures, within their frames stand children reaching towards each other.  At night the contrast between illumination within the wire frames “…demonstrates a conflict between a man and a woman as well as the outer and inner expression of human nature … Their inner selves … in the form of transparent children,  holding out their hands through the grating … This shining is a symbol of purity and sincerity that brings people together and gives a chance of making up.” – Alexander Milov.

I don’t feel the optimism the artist does when I look at this piece. What I see is a stunning representation of how we separate ourselves, in spite of what our hearts, our most inner self loves. There is no turning of the wire frames, they will forever remain separate, despite the inner reaching.

“And the moon rose over an open field

Cathy, I’m lost, I said though I knew she was sleeping
And I’m empty and aching and I don’t know why
Counting the cars on the New Jersey Turnpike
They’ve all come to look for America”

Simon and Garfunkel

Pete Fornatale said this lyric was a “metaphor to remind us all of the lost souls wandering . . .struggling to navigate the rapids of despair and hope, optimism and disillusionment.” Stephen Holden wrote it “simultaneously illuminates a drama of shared loneliness”. David Nichols called it “a splendid vignette of a road trip by young lovers; both intimate and epic in scale, it traces an inner journey from naive optimism to more mature understanding.”  I can’t explain as eloquently why the lines resonate deeply with me – “Cathy, I’m lost, I said though I knew she was sleeping, And I’m empty and aching and I don’t know why” – but they do.

‘Man and Woman’ by Georgian sculptor Tamara Kvesitadze

The towering statues are two humans made out of metallic discs, who move toward each other, seem to kiss, to embrace, to combine together, and then to pass through each other, parting and end facing in opposite directions, much like Milov’s work. They represent a Muslim boy, Ali, and a Christian princess, Nino and their tragic love story, but again, to me it represents how we separate ourselves from love.

This last year has been a series of journey’s, many, but not all of them, painful.  This fall had some profoundly painful leavings. Letting go of my brother will not, and should not, come easily, if at all.  Letting him leave in small increments, or starting to let go of the idea of his place in my life is like pushing through metal. Finding out who I am separate from the things that I had been clinging to for various lengths of time, separate from being somebody’s mother, somebody’s daughter, sister, somebody’s love, finding who I am separately will be my journey.

 

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there goes my hero

Graham 2

“There goes my hero, … Foo Fighters

“The mind of an addict is cunning enough to convince the body that it is not dying” – Michael Lee

The mind of the addict.

Sometimes I miss him so much it is physically painful. It comes when I am thinking of other things, and then it hits, and I can’t imagine how I could ever not be thinking about him. Like tonight when I was shopping at Walgreen’s and I remember the time I took him shopping for basics while he was living at the homeless shelter. I wrote about that here.

He is on Step 4. Three and a half years into this hell, and he made it to Step 4. I talked to him last week and I actually heard my son, not the addict, not the mental illness, but my son, my beautiful, funny, loving boy, I talked to him. He is working so hard, so very hard. He is clean and he is sober (four months now), but the psychosis is hanging on with a tenacity that has not let up, not even for a moment. Until now he could not cope with it without drugs.Without finding someway to escape the voices in his head, voices caused by biochemical imbalances in his brain. He is coping with the chemical imbalances in his brain chemistry clean and sober, that alone is heroic. But it is not enough yet.

If the biochemical imbalances manifested themselves as cancer, or organ malfunction in his body this would be an entirely different story I’d be writing. People would see the battles he’s faced. As heartbreaking as Robin William’s death was, it put a real face to how deadly mental illness can be, and he (Robin Williams) did everything he was suppose to, he was clean and sober, he took his medication, he saw a psychiatrist, and it still killed him. People don’t want to believe that mental illness is as debilitating as physical illness. It’s so much easier to stigmatize someone with a mental illness, so much safer, so you can find reasons why it could never happen to you, or people you love.  In a Mental Health First Aid class I recently took I learned that severe depression is as debilitating as quadriplegia – as quadriplegia. No one told Christopher Reeves to suck it up, and just get over being paralysed. He was seen as a hero for coping with such an overwhelming disability with grace and courage.  Robin Williams was no less a hero. People who overcome addictions and other mental illnesses are as deserving of the praise, love and support we give to cancer survivors. People in recovery need as much love and support as those undergoing major medical treatments. All are heros.

When we talked I told him how proud I was of him, and encouraged him to keep moving forward. He still has so much to overcome, so much work to do, and there are no guarantees that he will ever be well.

A friend of mine sent me this article. I am that quiet mom who doesn’t say much when people brag about the accomplishments of their teenage and young adult children. My son is never going to Princeton, he will not go to graduate school, he is likely not going to do most of the things I hear other parents bragging about, he may never be able to live independently. But he IS clean, and he IS sober, and he is working as hard as any honour roll student, as hard has any top athlete, and I am just as proud as other parents whose kids are in Princeton, on Varsity teams, whose kids are doing wonderful, exciting and accomplished things. I just don’t talk to many people about it.

He is using the support network he has to deal with the terrifying psychotic episodes directly. He is taking his meds. He is doing everything he is suppose to do. He is trying so hard, and it still holds him by the throat. He is on his umptenth medication combination to help his mind become more balanced, and stable enough so he can continue to recover. It may not be enough. He had to leave the wonderful place he had been staying in for the last 2 months and  in to go back into a “higher level of care” to get his medications and episodes stabilized.  I haven’t heard from him, or anyone since the transfer last week.

I look at the sky, and try to decide if this is colour it turns in the moments before it falls. (modified from Shane Koyczan’s To This Day Poem).

I don’t know how this turns out. I don’t know if he will get well. I don’t know if I will ever see my beautiful boy again, or if this disease will take him from me completely.

So sometimes when I am doing other things all this comes rushing back to me. The last few years that when I look back on them, I cannot imagine how we lived through them.

Michael Lee is a performance poet and a recovering addict and alcoholic. I listen to this poem a lot.

I miss my son. I pray that this is not the colour the sky turns in the moments before it falls.

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”

instructions for mothering an addict

 

Alex Colville, 1954 Horse and Train

Alex Colville, 1954 Horse and Train

  • pray often. whatever that means to you
  • try to get enough sleep, even though usually you won’t
  • put your own oxygen mask on first, you cannot help anyone if you fall apart
  • don’t give up. never, never, never give up. don’t give up especially when that’s all you want to do
  • learn to ask for help, and then learn to accept offers of help
  • keep living your own life, try not to feel guilty about the times you do things you enjoy
  • when it feels as if the world is crashing down on and around you, take one small step, then pick another small step and keep inching forward no matter how difficult
  • try not to be angry with people who do not behave as you would like them to. they are doing their best, and sometimes their best is not what you wish it would be
  • tell him you love him each and every time you talk to him. especially when you are frustrated and don’t want to. tell him you love him because life is short and uncertain and you never know if it will be the last time you will talk to him
  • do not curl up into a ball and give up, even though the heartbreak and the stress is more than you think you can bear. Bear it, if not for yourself, then for him, for you other children.
  • only let a select few see the pain you’re in, do not fall apart in public, cry when you’re alone in your car, in your bed, when no is there. the rawness will overwhelm most people and they will back away
  • do occasionally bring his clothes home, wash them, dry them and fold them, do not think about how you used to do this when he was a little boy
  • remember all the reasons for not letting him live with you, the relapses, the broken promises, the unbearable behaviour. remember these when all you want to do is wrap your arms around him and bring him home
  • do not listen to the song Bring Him Home unless you are alone so no one will see you cry
  • when you pick him up at the shelter, do not dwell on the dilapidated building, the sorrowful residents. sit with him in tiny hallway where tired mothers carry crying children, sit there till it is his turn to apply for medicaid
  • take him to pick up his antipsychotic medications, and while you’re there get him toothpaste, another toothbrush, sunscreen and antiperspirant. say yes when he asks if he can have gum when you are in the check out line
  • give him the money so he can take you out to lunch for mother’s day. order extra food and give him the take out containers to take with him. thank him for lunch.
  • buy him clean clothes from time to time and throw out the ones he’s been wearing for two weeks straight
  • do not picture him on the shelter floor on a thin pad while you are on your comfortable couch, or your warm and safe bed. thinking of this will only eat you from the inside out
  • when the enormity of what you have to manage becomes too much, it’s okay to put your head down on your desk and close your eyes, but you must lift it back up again and keep going
  • when he asks to come home, say no, even though your chest aches, and your eyes are filling with tears, say no, and tell him you love him.

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

 

 

and so this is Christmas

 

And what have you done
Another year over
And a new one just begun
And so this is Christmas
I hope you have fun   – John Lennon

And so it is Christmas and I  won’t be spending it with my son. Today I took him to the latest facility, to the latest attempt to save him. He won’t be home again for awhile, if ever.

We’ve been in a downward spiral for weeks (months? years? a lifetime?), and this could be our last chance at helping him. After this I’m officially out of ideas / money / hope / whatever.

and so this is Christmas

We’ll have just two stockings on the fireplace this year. I know we’re not the first family to go through something like this, but it is our first go at it.

and what have you done

I packed his bag this morning and took him in expecting a fight, expecting him to be a jerk. He wasn’t. He opened the advent calender I got him, and ate his chocolate while sitting in the waiting room. I don’t know if I’ve seen anything sadder. When it was time to go he just said thank you. I would have been easier if he had been an ass. He hugged me and I left.

Another year over
and a new one just begun

Last night I bought outside Christmas lights. Something we haven’t had in years. I bought suet wreaths for the birds and gave money to the Salvation Army. I’ll set up the lights today, hang the little wreaths and start decorating the house. It seems insane on one level to be doing anything at all, when what I want to do at any given moment is curl up and wish this all away. But life’s not like that. You keep living. You keep loving. You keep moving forward, and you keep hoping and planning for something better.

And so this is Christmas
I hope you have fun

Archie Bunker, Wendell Berry and the Buddha

I’m recycling some posts because I think what what they say still needs to be heard.

I don’t when it will happen, but sometimes I get into my car, or arrive somewhere and I just sit. I don’t drive, I don’t get out of the car. I just sit and stare; sometimes I cry, sometimes I just sit and stare at the steering wheel.

Most of the time I think “I’ve got this”, but lately I know, at best, I’m keeping a stiff upper lip. I keep calm and carry on, because to admit you’re not okay invites inquires and I’m not always up to telling my story. This morning I thought I was, but then had to sit in my car for 10minutes waiting for the urge to put my head on the steering wheel and cry to pass.

 God, grant me the Serenity to accept the things I cannot change

the Courage to change the things I can, and

the Wisdom to know the difference

Carrol O’Conner did a Public Service Announcement after he lost his son to drug addiction. It was well before I had kids, but his face and voice stayed with me, and when I feel like giving up, backing down or running away I think about him and I keep going.

About his son he said:

 

“I should have spied on him. I should’ve taken away all his civil rights, spied on him, opened his mail, listened to telephone calls, everything.”
 “Nothing will give me any peace. I’ve lost a son. And I’ll go to my grave without any peace over that.”
“Get between your kid and drugs any way you can, if you want to save the kid’s life”
In his eyes, I see so much pain, remorse, grief, and also I see resolve and courage to make this statement in hopes that it would help. Help save someone’s child. And now it is helping with my own son. I hear it when I am so tired I want to give up, give up and run away, when I want to give into my own increasing cynicism and cut myself off emotionally. I hear it when I am sitting in my car, staring at the steering wheel and seeing nothing. When I don’t want to go into my own house because I am not up for the next conversation I must have. 
Damn you Mr. O’Conner, this fight is too hard. I want to give up. I want to stop deciding where to draw my line in the sand and then stay there no matter what happens. Drawing the lines are hard enough, standing firmly by them can tear you apart. Then I hear him again, and I get out of the car, I stand my ground and I don’t run away. One day at time.

Not everyday is hard. Some days I have my son back, and he’s goofy, loving, helpful, and kind, but I trust those days less now because I have learned that he lies best when he is being kind and sweet, when he looks me sincerely in the eye. I’ve learned not to drop my guard and think this is the turning point, now things will get better, because invariably I discover missing money, that the sincere face was there to manipulate and lie to me. This used to feel like a kick in the gut, a betrayal. Now, it’s part of my life, and that I’ve become used to it is the thing that makes me the saddest.

Here is where I must remember to hate the disease, not my son. Addiction is a disease and its symptoms really, really suck, but my son is still there, even when his disease has him by the throat. I must remember this, but sometimes I don’t and then I have to forgive myself for not being perfect.

I find peace where I can, like now while I write this, or in the times I sit in my car just counting my breaths staring at nothing. I meditate, do yoga and hapkido, I go to parent groups and talk to other parents like me. These things help, while I’m doing them, but in the end I still have to go home and stand by my line.

I love Wendell Berry’s poem, ‘The Peace of Wild Things’, and in nature is where I find the most peace. But even here I find my cynicism creeping in, and it is hard to remain peaceful for more than a moment.

The Peace of Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

 — Wendell Berry 

“if you want to see just how much control you really have, try raising teenagers, several at a time”– my tweet 

I’m not a very good Buddhist these days (good thing I have Unitarian Universalism to fall back on), being so affected by things outside of my control (ie EVERYTHING AND EVERYONE who isn’t me). I get to control my own thinking, not necessarily my first thought, and absolutely not my emotions, but what I choose to think after that is up to me. Suffering comes from attachments, from ego, from clinging to hopes and dreams and not living with what is in front of and within you right now.

 At this point I would like to point out that the Buddha never had to raise teenagers, he became enlightened only after abandoning his wife and child. 

 I need a teacher who has managed to practice Buddhism AND live with children and teenagers, someone with a regular life. I can detach from my ego, recognize how my pride is making me envious, angry, resentful… piece of cake. Okay it took a long while and I’m still working on it, but try to detach with teenagers. When does parenting stop and enabling begin? How do my expectations of acceptable behaviour become attachment to future outcomes? How to I Be Here Now when there are forms to fill out, appointments to organize? How do I, or should I detach myself from my child’s self destructive behaviour?

 Being a parent is work, trying to be a good parent in difficult times is something the makes Atlas’ job look easy. Being a good enough parent is scary, joyful, funny, heartbreaking and utterly exhausting. It breaks your heart, but I think the only way to live with an open heart is by breaking it open, and that takes suffering, and pain, and that takes love, all the love you have. It isn’t pretty most of time, but it is worth it ( I hope….).

thankful

printed

Last weekend – if you’re Canadian – was Thanksgiving. We did all the usual things, making stupid amounts of food, eating stupid amounts of food, talking and laughing while eating the stupid amounts of food,  and then digesting it for hours (days) afterwards. There was much talk and laughter during dinner. Both my daughters had their boyfriends over and also some extra friends. We had a wonderful time.

No one mentioned Graham.

Actually I suspect everyone was mildly grateful for the reprieve. To be honest the holiday was easier without him. There was no constant redirecting, or monitoring  or having to keep track of the 6 foot toddler. It was easier in every possible way.

Except that it wasn’t.

Graham was on his own for Thanksgiving. He’s been on his own since he relapsed shortly after his sister came home from school for the weekend. He managed 8 days living with us before the expectations he had agreed to became too much. We actually had only about 2 good days with him before old habits started sneaking back.

He burned his bridges with the Marines and now has no life ‘plan’. He’s not in school, doesn’t work, and is homeless, not the sort of future you envision when raising your little boy. I look back over the last 18 years and wonder what I could have done differently, done better, not done, done more of, and my answer is it doesn’t matter. I did try everything thing I could think of to help him. He had mentors, role models, martial arts, fine arts, music, social workers, counselors, psychologists, psychiatrists, support groups, summer camps, youth groups, retreats, sweat lodges, and on and on. He had more support and resources in the last 6 years than most people get in their lifetime. Did it make any difference? Who knows? He’s still alive, and maybe some seeds were planted that may grow one day. Maybe, or maybe not. I suppose what is important is that we always tried, that we didn’t give up.

Except it feels like giving up right now.

Still, you have to do you best with what you are given. I have two daughters that deserve my love and support, and my time. I have had my own life on hold for more years than I care to admit, and it’s time to put some time and some love into myself, otherwise I will come out of this hollow with no idea who I was anymore. I deserve more than that. My daughters deserve more than that. My son needs to know what being a whole person looks like, what taking care of yourself and others looks like. One day hopefully he may even be able to take care of himself and have enough left to care for others. One day, maybe.

For now I concentrate on what and who is important. On the people I love and nurture and on those who have loved and nurtured me. I don’t have time for anything else. Living through difficult times provides a clarity that might not have been apparent otherwise. I have a limited amount of time and tolerance for bullshit or superficiality. I am begining to see my own worth and the value of real friends. The rest, is dross….

“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…”

– Ezra Pound, The Pisan Cantos

how to save a life

Image

When he was four, I carried my son into the Emergency room while he screamed in pain. He had, as it turned out, appendicitis. For the hours leading up to our dramatic entrance he had been at home not feeling well with a stomach ache which had become worse and worse. I had called a physician friend of mine and gone over his symptoms, which were basically pain, no vomiting, no fever, no right sided tenderness. I was worried it was appendicitis, but I wasn’t sure and wanted someone to tell me what to do. My friend ended up saying it was likely just a GI bug, but it could be appendicitis – ha ha!! Well it was, and his appendix burst that night before they could operate. He had peritonitis by the time they opened him up and they cleaned him out as best they could. That was the longest night of my life. I sat alone in the waiting room while the surgery they had told me would be 90 minutes stretched out for hours with no word to tell me what was going on in the OR. A week later he was sick, his stomach bloated, his incision oozing. They took him back into surgery and cleaned out the peritonitis again, this time leaving the incision open to drain. For weeks afterward the wound oozed and had to be debrided daily. There was no pain medication that helped and these sessions were essentially me holding him down while a nurse pulled out the gauze from hole in his abdomen, irrigated the open wound, repacked it with new sterile gaze. Eventually he healed, and all that is left is an impressive scar.

That was an exceptionally difficult thing to go through. When they finally took him into surgery I didn’t know for sure what was wrong, or what would happen. I was terrified and could do nothing but sit with it for hours in a small waiting room by myself. Difficult and terrifying to say the least, but at least there was something to be done. I took him to Emergency. I jumped up and down like only a mother whose four year old is in agony can until they got the on call surgeon in to see him. I held him up to, and right after surgery. I never left his side in the hospital, and when he had to get up and walk for the first few times after surgery and he cried and he screamed, I held his hand, and made him walk with tears pouring down my own cheeks. I held him down during the painful dressing changes and sang to him. I read him story after story to pass the time and to distract both of us. I felt helpless in the face of his pain and would have taken on myself if only I could have.

Now he is in pain again. He has been in pain for years.  I have done everything I can think of to help him. There have been countless doctors, specialists, counselors and therapists. There have been expensive in hospital treatments, year long out patient programs, support groups, and meeting after meeting after meeting. There have been successes, and there have failures. We have watched his peers struggles, sometimes they succeed, sometimes they fail, and sometimes they die. I can’t say it hasn’t worked. He’s still alive. He’s graduated from high school. Those are successes. But he is struggling more and more and now there isn’t a surgery they can perform to take the poison out of him. There isn’t a song or a story I can tell him to get us through this. I’ve sung all my songs, and he doesn’t like my stories any more.

There is another way we can help him, it is loving but also it is difficult. It is not an easy way, but may be the only way to get through to him and help drain the poison himself. It won’t be any less painful that before, but it could save his life.

On facebook today there was a picture of a young family. Two happy looking parents, three young beautiful children. The caption was “Father needs new cancer drug to stay alive”. You want to help this man, his family. Cancer is an awful disease and we all know and love people it has harmed or killed. There are fund-raisers for beautiful children ill with cancer. Everybody wants to save them, and they should.

Nobody has fund-raisers to help pay for an addict’s treatment. Nobody puts photos of their addicted son, daughter, spouse, parent, or friend and asks for support. They just aren’t that likable. You don’t get the same good feeling about helping them, and addiction is every bit as much of a life threatening illness as cancer. It is an illness, (more about that here) and it affects more people that most of us realize. There are treatments, and people do survive. People who become profoundly grateful and beautiful, in the way only those who have been through hell and made it back can be. They go on to help others going through this nightmare. This isn’t something that people generally share because of the stigma associated with the disease of addiction.

So. There is another program, in Utah, that would help my son. One that could save his life. And I don’t know how we will manage it. I am so overwhelmed I don’t know how to begin to figure this out. I still want to pretend this isn’t happening, but t is, and I will have to figure this out too. And one day, maybe, we may save his life.

 

“How To Save A Life”  – The Fray   http://www.youtube.com/watch?v=DF0zefuJ4Ys

Step one – you say, “We need to talk.”

He walks, you say, “Sit down. It’s just a talk.”
He smiles politely back at you
You stare politely right on through
Some sort of window to your right
As he goes left and you stay right
Between the lines of fear and blame
And you begin to wonder why you cameWhere did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

Let him know that you know best
‘Cause after all you do know best
Try to slip past his defense
Without granting innocence
Lay down a list of what is wrong
The things you’ve told him all along
Pray to God, he hears you
And I pray to God, he hears you

And where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

As he begins to raise his voice
You lower yours and grant him one last choice
Drive until you lose the road
Or break with the ones you’ve followed
He will do one of two things
He will admit to everything
Or he’ll say he’s just not the same
And you’ll begin to wonder why you came

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

How to save a life

How to save a life

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life
How to save a life

How to save a life