hope is not enough

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

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

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

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

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

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

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

He isn’t going to get better than this.

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

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

ghost

I love you

I got a call from a ghost today.

The call display said Montana, and  I almost didn’t answer, I don’t know anyone from Montana. The call was from a father that I didn’t know. A father that I will never meet. He told me his son was dead, and for a moment I had to think which dead son is this, which dead child is this about.

Then I understood.

This was Kevin’s father. Kevin who was dead. Kevin, the young man who made a small party my son’s first birthday in Arizona, far away from home. Kevin, who arranged for a decorated ice cream cake and twenty candles. Kevin who ordered pizzas with everything that Graham liked on them. Kevin who took pictures of Graham blowing out the candles and sent them to me because he knew how sad I was about not being there for his birthday. That Kevin who took care of my son when I could not. That Kevin who within six months of the party had relapsed, and shortly after had died.

I had sent his phone a text after he died. More of a prayer in text form. It read something like I’m so very sorry, and thank you. I was so sorry he had died, and still so grateful to him for taking care of my son. I sent it, and like a prayer, I never thought anyone would ever know about it.

I do understand that to his father when he finally got his dead son’s phone that my message would be a mystery. I imagine how many times he must of read it before he worked up the nerve to call me and ask just what I meant texting a dead person.

Today he called and we found out about each other, although we never even exchanged names. I told him that I was so sorry, that his son had been kind to mine, and kind to me, and how much that meant to me. I told him that my son was still alive and still clean and sober. I don’t know that was comforting or painful for him. I think it could be both. Maybe I should  have said in October my brother, John, and many years ago my father, Alan died of the same disease his son did. Maybe, but that’s not the same as a child. Nothing could be that.

He seemed content enough to have his mystery solved and we said goodbye, and then I sat there and cried for all of us, for those who have died, and for those of us who loved them. I cried, because there is nothing else I can do for Kevin, for John, for Alan, for any of the dead ones.

For the families and loved ones left behind, sorry is not ever going to be enough. Sorry can’t heal the kind of pain this is, but is all we can do. We say sorry and we then hold space for someone’s pain. We say sorry and we hold space in our words, in our actions, in our lives, and in our hearts for them. We let them feel their pain without judgement. We surround them in as much love as we can. This is what we do for the living,

because there is nothing more we can do for our dead.

hindsight

I likely shouldn’t be writing this, I’m tired, am nursing a migraine, and am not wearing my glasses; god knows what spelling mistakes and poor choice wording options I will make, but here I go, because it’s been too long since I’ve put words to a page or screen. Last night was the senior class party at the high school. My youngest, much to my surprise, is a senior this year so I, being the plucky parent I am “volunteered” (it was “mandatory”) to set up on Friday, and work part of the evening Saturday. It’s a big, fat, hairy deal. Twenty three different themed rooms, food, food, food, blaring music, and of course 700ish teenagers making their way through the whole thing. From my spot, in the pool hall (yes we had pool tables, and hoops, and foosball – I told you, it was a big deal) I watched various groups of kids swarm in, out and about. For a while it was really interesting, seeing kids that I had first seen in grade 1, now with facial hair and/or makeup and a bit of swagger. For moments it was poignant, the kids who had self injury scars that showed just below their T-shirts, the kids that were obvious trying really hard to fit in, and for a while it was painful, when I would see that kid who reminded me of Graham. That smiling, awkward kid, with the baggy pants, the baseball cap, and the bit of over the top swagger and laugh that may have been a cover. When I would see that kid, my heart broke a little. Graham was too messed up to go to his senior party, I can’t remember the particulars, but it was not even a consideration.  Ironically, (maybe there’s a better word), he called me while I was there. And then I came across this video on Facebook this morning, and it did me in What started Graham down his troubled path, was kids hitting him up at school for his ADHD drugs. He had problems fitting in for years and years, and only recently I found out how badly he was bullied on the school bus, but selling his ADHD meds was the way he found to fit in, to not be that outcast, to make “friends”.  If you read this blog, you know where this lead him. So the video. In the video I saw all the places I could have done more, should have known sooner, should have tried harder, defended him more, but truth be told, I really had no idea really, what he was going through. Hindsight. He is doing better than ever now. Nine months clean and sober, and the meds he takes seem to have brought the unbearable mental battleground in his head under control, but it’s a long hard road. He recently was bullied at the place he stays, and put up with it for way too long, told no one, because that’s the only way he had learned to deal with it. Thankfully it was addressed, the aggressor removed and Graham is now being taught how to advocate for himself, five (at least) hell filled years after he was first bullied in school. When they told me about it, I wanted to say, hey, I really tried to teach him that, really. I did, and I had counselors, countless social workers, guidance counselors, psychiatrists, psychologists, life coaches, tutors, addiction therapists, group therapists, martial arts instructors, peer groups, even a neuro-psychiatrist to help me, but it was not enough. I wanted them to know that I wasn’t that parent who buried their head in the sand, that I tried with everything I had to help him. That the times I sent him out and let him live homeless ripped out a piece of my heart that will not heal. That I look into the eyes of every homeless person I see so I can see what my son endured. That I read every day about the deaths, and the agonies that addicts and their families endure and remember what it was like, and feel so very, very lucky that my son is still alive. I wanted to say all of this, but I let it go, and talked about where he is now, but it still sits in my head, and in my heart. What could I have done better? differently? What did I do that made it worse? Could I have prevented this? I know the answer. No., I could not have prevented it. I know this in my head. I know I am far more fortunate than so many of the families I still am in contact with. I know this.  My heart still hurts when I see these wounded kids. I know I’ve put this up before, but if you have the time, it’s worth watching again

Things I want my kids to know, and try to remember for myself too

Things I want my kids to know, and try to remember for myself too.

instructions for mothering an addict

 

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 5^th 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 6^th or 7^th 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.

 

 

 

 

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

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

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

not okay

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.