not my first rodeo

IMG_7450This is not my first rodeo.

Not the first time I’ve received this call. Not the second, third, or fourth time either. I don’t know what number I’m on. Not the first psych hospital I’ve dealt with. Not the first time we’ve talked about suicide.

I do know there is always that part of me that exhales at the sensation of the sky finally falling. The, Ah, there it is! sensation that you couldn’t quite put your finger on until the phone call.  It’s not that I think about it all the time, I don’t, it’s just always there, hanging over me, just hanging around in the background, waiting. One moment it’s clear blue, and then the sun disappears, and purple-black clouds fill the sky, my skin gets cold, the wind picks up and I realize that they were always just at the edge of my vision, waiting. For what? It’s hard to say. Hope? For me to say “he’s doing well” a certain number of times, and to start to believe it?

The shift in me starts with the caller ID, I start to feel cold, to watch the sun disappear. As details and events become confirmed (confirmed, because part of me is always waiting for this call) I become still, focused, logical, organized, and pragmatic.I do what needs to be done. I call people, I email, I research, I take notes, lots of notes, notebooks full of names, places, numbers and details. I go through the check list, he’s alive, check, he’s safe, check, will he remain so long enough for me to sleep tonight?

I’m tired. Just really tired. Maybe repeated combinations of sad, afraid, anxious, pessimistic and optimistic eventually just register as tired. I do bits of the Kübler-Ross tango, but more quickly and with less intensity than before. Really I’m just tired. And no, generally I don’t want to talk about it.

Over the years we’ve let a lot of things go. When you talk about your kids and their accomplishments, their dreams and hopes I generally stay quiet. What could I possibly add? That our successes are measured on a much smaller scale. Is he alive? Is he safe? Does he have times where he feels happy? School, grades, girlfriends, cars, jobs, these are things that fell away.

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

– excerpt from Canto LXXXI by Ezra Pound

And so it is.

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.

dear john

dear john,

today I wanted to carve the words
carve them into my skin, so
all could see
what I am

when we spoke, had you asked, I might have told of the holes – I carve – inside, maybe you could have seen the ardent slice ripped out, to quietly lay at your deeply restless feet. but all it touched was your breath, passing backwards in your constant cool drifting words.

had you understood my voice –
could you have heard?
known my songs are all written for you?

before I left
did I tell you
of bloodstained views on wood grain hall floors – knee in my back, fists gripping long hair, of the stripes of our walls getting closer just before they turned black.
or was it you who told me
of the view from mum’s hand standing in doorways –
watching,

blocking escape.

dear john,

should I have warned you? of trusting too young, and of pain, and fear, and of blood, sometimes first – and of tears locked in rooms, could this have saved you?

I would have saved you – you know, taken your blows, swallowed your bitter bruises, your raw pain, and sent you away whole – if only I’d found you.

dear john,

even now that you’re here,
I’ve lost parts of you.
and no longer can I wrap you in blankets.
I can’t find your song or your bruises. so I keep carving these slices off me to make us both whole, but your restless feet walk by them with your words always drifting backward at me.

dear john,

today I wanted to carve the words
into my skin
so all could see
what I am.

how to save a life

Image

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

How to save a life

How to save a life

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

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

How to save a life