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solid rock

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Alex Colville, 1954 Horse and Train

Alex Colville, Horse and Train,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

there goes my hero

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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.

life with addiction, mental illness and stigma

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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

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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

thankful

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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

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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

try a little tenderness

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Twelve years ago today I was at work. My children were 8, 6 and 4 years old and were at school when a patient came into the office and told us someone had flown a plane into a World Trade Center building. The rest of the day unfolded in horrifying and heartbreaking images  It was a terrible day,

For many people it still is. A day full of pain, heartbreak and fear.  This article The Falling Man – Tom Junod – 9/11 Suicide Photograph – Esquire  is going around social media sites today. It is a very powerful photo and a very powerful article.

“They began jumping not long after the first plane hit the North Tower, not long after the fire started. They kept jumping until the tower fell. They jumped through windows already broken and then, later, through windows they broke themselves. They jumped to escape the smoke and the fire; they jumped when the ceilings fell and the floors collapsed; they jumped just to breathe once more before they died. They jumped continually, from all four sides of the building, and from all floors above and around the building’s fatal wound.”

It bears witness to the horror and heartbreak of that day. I think this is important and necessary that we have these images, and the stories that go with them, but I believe it is more important to be respectful of people’s emotions surrounding the events of September 11th. For some this is too much to look at. For some this hurt is still too raw, and these images are still too painful to look at.

They are important, they should never go away, but maybe it is still too soon. Years from now when my children are adults, when their children are adults and the events of September 11th are not a memory, but a story told to them, then the videos, and the photos will be crucial, they will make what happened real for those who never experienced it. They will bear witness in perhaps a similar way as artifacts from the Holocaust keep that from becoming just a story. These images will not, and should not ever go away, but who sees them and when should be a matter of choice. It has been suggested on one facebook page that not showing the image of the Falling Man is  “Political Correctness and it’s sniffling sanitation to protect people (keep them ignorant) who will not deal with truth and what needs to be done.” I don’t agree. I think when someone finds an imagine too painful to look at it indicates that they are not ignorant of the events, on the contrary, that the events are very real to them and still very painful. It is not the same as someone denying an event occurred or sanitizing how it did. It is very real people dealing with very real and powerful emotions.

I think we could all do well to treat each other with a little more tenderness, and a little more compassion, today and always. We’re all fighting our own battles and our own demons and absolutes and judgements do nothing but isolate and cause more pain. I may be wrong, I may be missing the point of absolutely everything. I may be naive and do not understand the nuances and implications of the situation. All of these things may be true, but in the end I believe it is more important to be kind than it is to be right, that people are more important that news. I believe that whenever possible I should be kind, and as the Dalai Lama says it is always possible.

“Try a little tenderness (that’s all you gotta do)
It’s not just sentimental, no, no, no
She has her grief and care, yeah yeah yeah
But the soft words, they are spoke so gentle, yeah
It makes it easier, easier to bear, yeah…”

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(thanks Bilbo)

I just got home from a 3,368mile (5,420kms) drive (there and back again) from my home in Naperville, IL to Wolfville, NS. Two days driving there, one day stop-over, Two days driving back. About 54 hours driving time. It was the longest drive to and from school I have ever taken one of my kids on.

I spent the days leading up to the drive randomly being gripped in terror. I would suddenly feel the ground drop from under my feet and my stomach would leap into my throat, my heart would pound and I would want to cry. I felt certain that I was making a huge mistake, or at the very least doing absolutely everything wrong.

I get angry at myself for remaining in situations that do not serve me, my marriage, my job, my home, okay, my life in general, but then I’ve always had that terror and painful certainty that pin me down. With any major, and most minor decisions I am generally quite certain I have, or I will make the worst possible choice, and that sitting and doing nothing is my safest option. I assume that everyone else on the planet, or at least my peers, or my betters (which is where I put most people), would be handling this, or have handled this so much better, or have, at the very least, been better organized about it (my disorganizational skills are legendary). Other people, I dangerously assume, have the support of a partner, of parent or if they’re insanely fortunate, parents,  or at least some close friends to reassure them they are making good choices. I have none of these and as a result am left with the really not nurturing voices in my own mixed up head. It’s a motley crew, the voices in my head. Part my mother (appearances are everything), my father (appearances are bullshit), my step-father (you’re utterly worthless, stupid and will make utterly worthless and stupid decisions unless you think and act as I do), ex-partners (I didn’t love you and I will leave you shortly so you better get that wall up to protect yourself), the occasional friend (hey, you’re awesome!  *but if they really  knew me they would get over that notion pretty quickly), and finally, in the back ground, usually jumping up and down like a far away but hyperactive 3 year old, is a  small fierce voice that is the part of me who hopes and tries for something better. That small voice is the one who talked me into the 50+ hour road trip, it’s the voice that took me scared shitless to surfing lessons, the one that had me running around London and later the Dominican Republic on my own while presenting this brave adventurous face to anyone looking. Inside I thought I was an idiot, and doing everything wrong.

So, my monster drive, that I still can’t decide was brave and meaningful or crazy and stupid, or maybe it was all of these. I can present a very believable case either way. It did allow me meaningful time with my daughter, to process her going onto this next important stage in her life, to honour what she has done, and to be present for part of the transition which was painful for us both. That was important and I’m very glad we had that time (not sure if we needed so many hours of that time, but that’s done now).  I brought several books to listen to, and was lost in stories for much of the drive. I drove past and through many landmarks of my life, in places I’ve lived and by people I have loved.  So many places, so many people, so many memories.

In the end, truth be told, it wasn’t really that brave a decision. I could not afford a plane ticket, my husband, who could afford one,  would not discuss it, so I did what I thought I had to to get my daughter to school. I could have pushed the issue, but decades of experience have taught me that I am on my own with this sort of thing and I rarely bother anymore. Now, of course, he is organizing for her to fly home for breaks and is the hero, where I am the one that took her on the never ending car ride. Part of the reason he is adored by both our families and I am not, that and he is a much better schmoozer than I am (to be honest I suck at schmoozing, alas…).

I try not to listen to the less than caring voices in my head. To focus on the little fierce one. I don’ t know if this is wise, or how much wisdom that voice has. In many ways it is a toddler with very basic and primordial needs, so I’m not sure if this is my Id jumping up at down, or at least my ego, but has kept me going when there was nothing else that would, and for that I’m grateful. It has kept me moving forward even when I am certain I will fail, it kept me driving all those hours, it help hold my my head up (even when I’m looking like a complete idiot), and it, usually, keeps me from curling up into a ball and giving up.

I think I need to be kinder to myself, maybe even forgive myself for not having this whole life thing figured out. Maybe even let the kind voice be heard among the rabble-rousers carrying on in my head. I think this is a rather poor ending to this blog, that I could have done better, but maybe this one will do.

not okay

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Everything he wanted went into one large duffle bag, except for the two baseball hats he wore so they wouldn’t get bent.

“What’s it like to move out mom?”

“It’s really hard” is all I manage. To say more would have me crying as I picked up his McDonald’s meal and gift card.

I don’t manage this for long and soon enough I’m bawling in front of the man who will be housing my son, his duffle bag, two hats and his McDonald’s gift card. Later tears pour down behind my sunglasses as I walk my dog round and round the dog park.

He was so quiet. So mild mannered. It made it more difficult. I told him I didn’t want this, but this is what we have now, a void in my home where my son used to be.

When I was 16 my mom told me one Monday that I would not be allowed to live with them anymore and I would be moving up north to live with my father. Five days later I was on a plane to a completely different home and life. I didn’t hear anything from my mother for over six months. It was not the first, and certainly not the last time she cut me off, or decided she didn’t love me. It shouldn’t have been as big as a surprise as it was, but that first major rejection was a shock.  For months things had been getting worse with my step-father. One bad day things were bad. I tried to run out the front door and he had caught me by the hair and hauled me back in. Then he really lost his temper. My mom stood in the doorway holding my little brother’s hand watching. Afterwards when I was crying in my room she came and told me I was to come downstairs and tell my step-father that I loved him because he was so upset. Something shifted then, and I realized my mother would stand with her husband no matter what happened. This has been the case for over 30years now. Mothers are suppose to defend and protect their children, mine protected her husband. That was the most physically violent episode, but certainly not the last. Names I can’t repeat, taunts, slaps, fistfuls of hair and every time I deserved it. I simply would not play the part they wanted me to and eventually she wanted me gone, and she kicked me out.

It doesn’t matter that I am not my mother, or that the circumstances are utterly and completely different, I have done to my child the single most painful thing that I have ever experienced, and that is not going to be okay. I did it with compassion, my son knows how much I love him, but at the end of the day I sent my own child away, and that will never be okay.

get used to it

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ImageWhen I was pregnant with Catherine my first child, I worked as a nurse in a very busy pediatric hospital in downtown Toronto. It was here I was the most perfect parent, before I had my own kids, and for the most part, when I was surrounded by people were making mistakes with their own. Things I promised myself that I would never do. We liked to say our ward saw everything (it was actually nicknamed “Nam”, as in Vietnam) and even now I don’t think we were too far off. There were so many worst case scenarios, shaken babies, cancer, home births gone wrong, babies born with AIDS (when it was new and unknown), abuse, neglect…. for me they all were warnings about what not to do. There was one baby, Sheeva, that I will always remember. Her mother was beaten so badly during her pregnancy that the baby had seizures before she was born, and her short life afterwards was little more than seizure after seizure resulting in increasing brain damage until she died. Heartbreaking, and terrifying.  When I was pregnant I would take just about every normal prenatal symptom as a sign of something dire, and I drove myself insane with worry. One evening shift Catherine was hiccuping or kicking or just jerking around as fetuses are apt to do, but I was taking care of Sheeva that night and was terrified my baby was having seizures. I was not my most rational when I was pregnant, and when it comes to my children, I’m still slightly manic. I turned to Emma, a nurse with two young children, and asked in a semi-panicked state if she thought my baby was having seizures. She said, in a very Emma like fashion, “well, she might be having seizures, OR it could just be hiccups”. Somewhat calmed I asked her how she coped with the constant worry that I was experiencing and she gave me the best piece of parenting advice I have ever received, “Get used to it”.

Get used to it. There would be no magic day, birth, grade 1, adolescence, adulthood that a parent gets to say, whew! that’s it I don’t have to worry any more, there would always be something new to worry about. Am I reading the right books to them? Should I let them eat fast food? Do I make them clean their plates? Do I let them cry themselves to sleep? When do I wean them? Is so and so a good enough friend? What about piercings? tattooes? sex?? and will I screw them up forever if I make a wrong decision along the way? What if I’m doing everything wrong? What if ??

When I was five months pregnant with Catherine I had a routine blood test come back as positive for spina bifida. Actually, it was a could be positive and more testing would be required. Again I had taken care of some extremely disabled children with spina bifida and in my young “all knowing” mind had decided that I could never “deal with it” in my own child. Things were so much easier, so much more black and white when I was younger and knew the answers to everything (like all of those “should I?” parenting questions that became much fuzzier with each baby). So they sat us down and explained our “options”, which were, level 2 ultrasounds, amniocentesis, and termination of the pregnancy (we lived in Canada where termination is a medical decision), and there I was, my previous black and white world turned upside down by a blood result. Everything I has regarded as unchangeable fact was now up for interpretation. It was excruciating. In the end I wouldn’t even take the risk of amniocentesis, and opted for the ultrasounds, and my daughter was born healthy with an intact spine. The prenatal worries I had were, mostly, erased by the time Catherine was a a couple of weeks old, but now I was on to a whole new set of worries, and I realized how true Emma’s advice was.

Get used to it. Yeah, well that really sucks.

I was sitting the other day thinking I just had to get through the next two months with my son and then I would get a break, and then it occurred to me that the worries would not end when (if) he got to boot camp, that if anything I would find a whole new set of things to worry about, and when (if) he finishes there was another set of even bigger worries waiting for me. Get used to it. Damn.

So this is life when you love. You are open, and it will hurt, it will hurt a lot, and the answer is not to close yourself up in hope of protecting yourself from the pain, the answer is to stay open, to be hurt, to be heartbroken over and over again, because this is what will help you be kinder, gentler, more empathetic, and able to deal with life’s heartache, because you don’t get to be alive without heartache. Closing yourself off and hiding from life’s worries and pains makes you hard, brittle and frightened. I know, I’ve tried, and it was horrible.

“The term “kintsugi” means ‘golden joinery’ in Japanese and refers to the art of fixing broken ceramics with a lacquer resin made to look like solid gold. Chances are, a vessel fixed by kintsugi will look more gorgeous, and more precious than before it was fractured. Some say we need to cherish the imperfection of a broken pot repaired in this way, seeing it as a creative addition and/or re-birth to the pot’s life story. Others say that when something has suffered damage and has a history, it becomes more beautiful.

And so are we, more beautiful with our wrinkles, our cracked and fractured hearts, and with our worries. This is life, get used to it.