hope is not enough

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

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

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

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

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

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

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

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

He isn’t going to get better than this.

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

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

divinity

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dear Johnny,

He was there again at the same spot on my drive home. Hours and hours after I had stopped and given him what food I had. The same face, same cardboard sign that driver after driver pretended not to see. He seem resigned to this, that he deserved nothing more than their indifference. I think this is what made me cry, this and the thought of his cold hands holding that sign. 

This is where I remember I am no hero for feeding him, that I am the person who left you to die alone with your hands and face slowly turning cold hours and perhaps days before they found you. I remember that I let my own son be homeless, left him to the mercy of strangers, let him be cold, alone and resigned to the indifference of others. That once when he came home cold and hungry I gave him a sandwich and a sleeping bag and sent him out again into the cold night. That I spent that night just sitting on the floor because I could find no other way to breathe. I remember other nights sitting against my bedroom door listening to him trying to get into our house, not crying, only breathing.  But the sight of this boy tonight, this cold boy, holding his sign, his face believing that he deserved no better, tonight this is more than I can manage.

When I see him I also see you, cold, alone and dying. I see my precious boy walking away from his home on a cold night with a stupid sandwich and a sleeping bag and I know that I let all of you down. That I let you die Johnny. That I let my boy be cold and alone and hungry. 

I don’t ever want to be forgiven for this.

And so, I see all your faces together, all your cold hands holding that sign today and it is as raw as the nights I spent sitting on my floor not saving anyone but myself. 

I don’t what divinity is, only that I saw it in his face today and all I wanted to do was save him, feed him and to beg him to forgive me, but the traffic moved then and I do nothing but drive home and leave him cold and alone holding his small sign.

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one of us

It’s always the same funeral home. Maybe they specialize in supporting the families of addicts and alcoholics. Maybe one them is one of us and understands. Maybe, maybe not, but it’s the place we meet when one of us dies.

griefstatueOne of us.

Another one of us has died. We gather together again and stumble through all the things you say when there really is nothing that would make this anything other than horrible and tragic. Prayers, Healing Light, God, Heaven,  At Peace, Better Place, people say these things when they want to provide some comfort, where there is none to be had. There is nothing that is comforting at a time like this. Honestly the only thing that makes sense to say is that This Sucks, It Sucks A Lot, and I’m sorry. We hug each other, cry, hold hands. We laugh too, just a little, sometimes.

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This will be the first memorial I’ve been to since my brother’s.  He is at the front of my thoughts today. He is most days, but more so today. I miss him. She will miss her sister. Forty and dead. Somehow this seems worse than forty eight and dead.

Not that you should qualify the degree to which some thing is tragic, but we do just that. Did they have children? How old are the kids? Was it sudden or was it drawn out? How old were they? Were they in love? What were their gifts? Somehow the answers to these questions let us decide relatively how tragic someone’s death is. Then there is the shame or a stigma that can accompany a death from addiction, alcoholism, or mental illness. Sometimes this can let us believe that we can be immune to this kind of death. We cannot. No one is. We know this. It’s why we congregate and reassure each other that we are still okay, that our demons are still in check and that, just for today, we can look at them without needing to hide from or numb  our feelings.

As to the purpose of this pain and heartbreak, I can think of just one, and that is to make you better able to be of service to another person. Ultimately, that is all we can do, service is the thing that gets us out of our own ego centered lives and broadens our vision and our reach.  John’s death has been unspeakably painful, it has been to date the most difficult thing I have experienced. It brought me to my knees, physically and spiritually. It has made me at times, angry, heartbroken, depressed, cynical, and so many more things.  It has also opened me in a way I was not before. Today’s service was excruciating, awash in all the emotions from John’s service and the months following it, but I was also able to be there for a friend and be fully present with the pain she felt.

People die from alcoholism and addiction for many physical reasons, but emotionally a very self centered fear is what takes over their thinking and leads them to their death. Fear of not getting what we desperately want, that we are unlovable, fear that we are unworthy  is often what drives us, what holds us back, what causes us to lash out, to retreat and hide. When we live in fear we don’t really live. When we live in fear we can reach for anything to numb it, to take the unbearable feelings away. Living in fear is dark and scary place. The only way out of it is to do the thing that is the most terrifying, to lean into the fear, to feel it completely, to get really, really uncomfortable, to tell someone of your shame, your fears, to be fulling present as yourself, your flawed, imperfect, messy, shameful self. It is here you realize that you can survive being uncomfortable without constant distractions, that you are worthy of love, that you can be comfortable in your own skin.

TIMG_3274his is not the easy path. Anyone who has walked it wished for an easier, softer way. If there is one, I have not found it. If there was one there would be fewer services like today.

ghost

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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.

this is what the living do

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Johnny,

I have become a person who people send sympathy cards to, someone people want to nurture with food, chocolate, flowers and kind messages. People hug me when they see me, and ask how I am. Most of the time I have no idea.

I’m wearing your pj bottoms as I write, and drinking tea from one of your cups. The pile of your newly washed, and neatly folded clothes sits on my bed and asks me what are you going to do with us now? I don’t know, that’s why I tried on the pj bottoms. I had to roll the waist because you were taller than I am. Were, I have to get used to speaking of you in the past tense.

We’ve been speaking of you in the past tense for two weeks, two weeks tomorrow, Saturday at 4pm. I’m still getting used to that.

I also wear your wedding ring, the one that dad left you after he died. It’s on my thumb. I play with it constantly, twisting it, rubbing it. I think about you and dad, and how I ended up older than either of you, and wonder if wearing this ring is a good idea or not.

I think you would like your service, it’s in two weeks, and I have spent a lot of time working on it. It has readings, poems, and we’re playing Leonard Cohen and The Beatles, actually the choir, the one you used to sing with, will be performing Hallelujah and All You Need is Love. They said they would be honoured to sing for you. Honoured, I wonder what you would think about that. We’re doing two of my favourite prayers. To be honest I don’t know what you would think of the whole thing. I finished the first draft of your eulogy, I’ve never written one of those, but I’d never written an obituary either, and I think your’s turned out alright.

When I went through your clothes that first week, the week we went through and cleaned and organized your apartment, I mainly thought of ones for Graham, so he could have something of yours. I thought about taking a box of your books for him too, but then didn’t. You two had so much in common, but he walked out of his treatment centre 3 days ago and we don’t know where he is now, so I’m back to looking at the pile of clothes, and I’m still don’t know what I will do with them.

I sit here, healthy, safe and warm, and you’re gone, you’re not even a body anymore, you’re ashes siting in a container somewhere, I don’t even know where. They gave mom your glasses and your watch. That’s what she has, your glasses and your watch. I can’t begin to know how that feels. Did they put them in a special box with gold lettering? A velvet bag? Or did they just shove them in a brown envelope? Does that help? I don’t think it would. I think it would equally excruciating to receive the items from your child’s body no matter how they were presented to you.

You broke my heart, Johnny, you broke all of our hearts, and I let you die. I let you die alone. I let my son become homeless, and I sit in my house and feel sorry. I feel sorry, and sad, and tired, really, really tired. Somehow that seems wholly inadequate. It seems there should be larger consequence for not saving you, or Graham, or even dad.

There is more, obviously. You can’t tell by looking at me, or by talking to me, most of the time anyhow. On the outside I look and sound pretty much the same. I’m not. I’m unmoored, I am no longer somebody’s sister, I no longer have a brother, and you were it, my only sibling. It’s just me now, and that feels unnatural. All our private jokes, our code words, things that only we talked about and knew, all those things are gone, and what’s left is just space.

This was not how all of this was suppose to turn out. We were going to be great. We had grand plans. Happy lives mapped out. Lives with spouses, and happy children, successful careers, and somehow bits of that got lost.

I have to stop now. I have to find a place to put your clothes, and I have to go back to the actions that make up my life now.

I found this poem for you. I think maybe you would have made fun of it, but you don’t get to speak for yourself anymore, so here it is.

What the Living Do
Marie Howe

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there.

And the Drano won’t work but smells dangerous, and the crusty dishes have piled up

waiting for the plumber I still haven’t called. This is the everyday we spoke of.
It’s winter again: the sky’s a deep, headstrong blue, and the sunlight pours through

the open living-room windows because the heat’s on too high in here and I can’t turn it off.
For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking,

I’ve been thinking: This is what the living do. And yesterday, hurrying along those
wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve,

I thought it again, and again later, when buying a hairbrush: This is it.
Parking. Slamming the car door shut in the cold. What you called that yearning.

What you finally gave up. We want the spring to come and the winter to pass. We want
whoever to call or not call, a letter, a kiss—we want more and more and then more of it.

But there are moments, walking, when I catch a glimpse of myself in the window glass,
say, the window of the corner video store, and I’m gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I’m speechless:
I am living. I remember you.

Goodnight Johnny. I love you.

“I just sit by and let you fight your secret war”

meanwhile, when you were focused on back to school, this happened

So This happened today.

The Heroin Crisis Act Unanimously Passes Through Illinois House

A friend from one of my online support groups summed it up beautifully “Today was epic! Illinois legislators passed House Bill 1, the Heroin Crisis Bill that opens up treatment options for ALL who suffer from the disease of addiction. You no longer have to be wealthy, or have “the right kind of insurance”…all you have to do is want to get into recovery, and a way will be found.”

Alex Colville,  Horse and Train,

Alex Colville, Horse and Train,

People have died. Way too many people have died, are dying now, and will die from this disease.

I don’t mean to be unkind, really I don’t, but there are days when reading about how hard it is to have your well, well and alive, well and alive, and thriving, child away at college and how much you miss them, and all the money you have to spend on their phones, books, cars, rent and so on, there are days I just can’t read your Facebook posts, or look at pictures of your kids’ dorm room, college campus, and/or sports team. Today is one of those days. Today I am missing my son, not because he is away at college and spending too much money, but because he is away in treatment half  a country away. He’s been away for over 15 months, without holiday weekends visits, or summer or Christmas  at home. I haven’t seen him since December, his sisters since last June.

And I know there are people reading this who would give anything to have their child safe and in treatment, anything just to have their child alive again.

We are very, very lucky. We had the “right” insurance, sort of. More accurately, we had insurance and the time, and the physical and mental tenacity to fight, to fight over and over and over again, for coverage that was constantly denied. I can’t even think about the money still owed.

So yeah, today was important. I am hopeful. I am precariously optimistic that things could get better, that fewer families will watch their loved ones die from lack of adequate treatment. I am also tired, and feel like my skin is way too thin, and stretched way too tight, and feel like I have no defenses left, no protection from the emotions this stirs up. Oh, and I hate this disease, I hate how it decimated my family, my son, but also my father and my brother, and all who love and who loved them.

That’s it. That’s all I’ve got tonight. No pithy wisdom, no sage acceptance or quotes about letting go and letting god. Just straight up tired, Maybe tomorrow I’ll be wise.

it’s got nothing to do with a better rat cage

nugget

So a friend posted this, The Likely Cause of Addiction Has Been Discovered, and It Is Not What You Think. 

I read it, a few times, and while it is not completely without merit and makes some valid points, it is an oversimplification of a complex disease, and ultimately draws conclusions and makes generalizations from limited data.

I completely agree that the way we treat addicts, that the ‘war on drugs’ only contributes to the problem.  Criminalization and incarceration simply do not work. I do not agree that simply by making a better rat cage we can prevent or treat drug addiction.

The “Rat Cage” experiment was this. Put a rat in a cage, alone, with two water bottles. One is just water. The other is water laced with heroin or cocaine. Almost every time you run this experiment, the rat will become obsessed with the drugged water, and keep coming back for more and more, until it kills itself. The conclusion was that once exposed to the drug the rat became addicted and then ultimately died from the addiction. There are different versions of this test, another, perhaps more relevant, experiment involved direct stimulation of the rat’s pleasure center in the brain when the rat pressed a bar. Here the rat would neglect  activities such as eating or drinking to press the bar, and ultimately died.

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Addiction is caused by a combination of several things that basically can be divided into three categories, drug use, stress, and genetics. It is a combination of these three things that will  cause addiction. This is why some people can use without becoming addicted (no genetics, and/or little stress), and why some become addicted with only a small amount of use (strong genetic component, high stress).

Addiction happens when the combination of these factors trigger a reaction in the brain that causes a shift in neurotransmitter activity.

Don’t believe me? Watch This  

Back to the article. They made a nicer rat cage, with rat balls, rat toys, other rats and the rats in there didn’t want the drugs anymore. Interesting right? Then they correlated this with Vietnam soldiers who used heroin and came home and didn’t need it anymore. In other words they left the lonely rat cage for the nicer one and the need for drugs went away. The point the author keeps coming back to is that drugs don’t hijack the brain and cause addiction, that disconnection does, and here is where I have the problem.  Addiction changes the brains neurochemistry, addiction in the form of alcohol, drugs, or behaviours such as gambling, food, or sex. It is when this shift happens addiction occurs.

The danger of articles like this is that the implication is that if only you had a better rat cage your loved one would not have become addicted. If there had been connection, beauty, and nice rat toys addiction would not have happened. That is the family’s fault that addiction happened, if only they had done a better job. If only. 

If only. Words that have echoed through my head for the last five years. If only I had done more, done things better. If only I had done this or that, or not done this or that. If only breaks your heart. Articles like this make me angry, because my son had a fantastic fucking rat cage, and he still became an addict. He had support, he had early, early intervention (in grade school through high school), he had mentors, social peer groups, doctors, a family that loved and supported him, and he still became an addict.

And yes, we did make him leave our home, I let my own son live on the streets and in homeless shelters, that doesn’t mean I ever stopped loving him. I wrote about that here and here and here and here and so many more times.

The rat cage, the sad empty one that makes the rats want the drugs, that’s not an addict’s home life, that’s an addicts thinking.

The rat cage is their thinking.

There is no easy fix for someone’s thinking. It’s hard, heartbreaking work, and sometimes to be able to do this work, you have to get to a very bad place so you are motivated enough to want to change. I know this because I have done the work, I have been to that dark cold place inside me and I have crawled out of it.

We need to stop blaming the victim, blaming the family, they have been through a hell that you cannot imagine, and to say that addiction happened because of a lonely rat cage is unacceptable, short sighted and heartless.

And yes, I am angry. I’m angry that there are people who care more about how this makes them look than about helping people who need it.  That people who should  be a foundation of support, are defensive and outraged that I would even have this conversation. That people would rather be angry with me than examine why I keep talking about this.

Micheal Lee comes as close to showing what this has been like for me as a person in long term recovery, and what is like to love someone suffering from addiction. He does it in 2 minutes. I have been talking for years and it still seems like no one really hears me.

one more, if you want to see a simple, but very clear representation of addiction

Hope

wpid-20150312_111347_1.jpgThey do not have Congratulations on Your Continued Recovery cards, or at least they don’t have them at Walgreen’s, which is where I go to get items for his care package. I’ve already sent him granola bars, almonds, and a new book from Amazon, but I have to go to Walgreen’s to get cigarettes, cigarettes, some car magazines, a bit of chocolate, and a card. I have a system, first at Walgreen’s painstakingly explaining the cigarettes are not for me, and later at home as I pack and label his bi-monthly box with trinkets and necessities so he knows he’s not forgotten and is still loved. I cry a little each time, sometimes I cry more than a little, sometimes I keep the tears in my eyes all day without them ever falling down my cheeks. My chest feels tight, and I am drawn back into the place where hope and fear co-mingle whenever I stop my busy mind and think just of him.

Today it really feels like Spring, and as I carry my reusable shopping bag of cigarettes (because cigarettes or not, I’m still me) into the house, I stop to look at my garden. My front garden has gone from snow to mud in a week, and for days I have been crawling in this mud looking for the first signs of life. Today the  daffodils are breaking through the ground. Today I found the first buds of the Lenton Rose under the snow. Today my dog tore through the yard unimpinged by snow, and sent clumps of mud flying in his joyous wake, and today, I stood and listened to the cardinal I’ve named Oberon sing from the still bare maple tree. Today Spring is here. Today you can hear hope in the air, see it the mud, and for moments I feel it in my chest.

wpid-20150312_111708_1.jpgIn the cycle of nature there is no such thing as victory or defeat; there is only movement.”
Paulo Coelho,

There is no such thing as victory or defeat; there is only movement, and so we keep moving. As long as there is life, there is hope, and today there is life, today there is hope.

There have been other Springs, other hopes, some have lived, many died, but I’ll hold these little bits of it close, at least for today, and maybe when I’m mailing his package this afternoon there won’t be as many tears floating in my eyes, or maybe there’ll be more, but they’ll be the good kind of tears, maybe.

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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

there goes my hero

Graham 2

“There goes my hero, … Foo Fighters

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

The mind of the addict.

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

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

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

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

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

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

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

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

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

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

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