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

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.

just for today

“…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…”

This line of poetry has been going through my head for hours. It’s from The Invitation, by Oriah Mountain Dreamer. This morning I nearly couldn’t get up after the night and do what I have to do. This morning all I wanted to do was curl up with my aching head and broken heart and forget. I wanted to pretend last night didn’t happen. This is how grief works I suppose. This being  the denial stage of Denial, Anger, Bartering, Depression, Acceptance (according to Kübler-Ross), or maybe I’m doing it wrong and I’ve skipped anger and bartering  and gone directly to depression (do not pass Go, do not collect $200). I know I’m tired. I know I’m not up for this again. I know having a small taste of what life could be like without this fucking disease (is that you, anger?) makes loosing the hope again really painful.

Pema Chödrön tells us to  “lean in when we feel we’d rather collapse and back away” 

“…feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we’re holding back. They teach us to perk up and lean in when we feel we’d rather collapse and back away. They’re like messengers that show us, with terrifying clarity, exactly where we’re stuck. This very moment is the perfect teacher, and, lucky for us, it’s with us wherever we are.”
― Pema Chödrön

So, when I woke up at 1am I spent the next several hours leaning-the-fuck-into it and it was nearly unbearable. Cursing Pema, not for the first or last time I’m sure, I spent the hours that I would have rather been spending in amnesiac sleep feeling like Oscar Wilde’s nightingale from The Nightingale and the Rose, (read at your own risk, Oscar never pulled his punches). I leaned. I meditated, I said the mantra my old crush yoga teacher gave me, I prayed to God, Ganesh, my higher self, St Francias and to anybody who might be listening. And I survived the night. I’m up walking and talking today and on the outside I look just the same. Inside is not so pretty. Inside I’m replaying my conversation with my son. My son who was thrown out from where he is staying, my son who has relapsed in body, mind and spirit. My son who is killing his own future, his own dreams. My son, who is ripping everyone who loves him to pieces.

You make tough decisions, actually you make gut retching, heart breaking decisions, but unlike the movies, that doesn’t fix things. There will be no soft swelling of music, no neatly wrapping up of things, no wistful and knowing smile that shows you made it, you got through it, because this is real life, it’s not a movie and you don’t get to go home now, now you get to  make more of those gut retching, heart breaking decisions and instead of music and scenery you get more pain. So here I am. The light I glimpsed at the end of the tunnel just got smaller and further away. The plans I had dare make will be shelved once again as I am sucked once more into this cycle of addiction.

Last year I read a blog from a man who said he wanted his kids to be addicts. Wanted his kids to be addicts because he worked with a remarkable young woman who was a recovered addict. What he didn’t realize the reason recovered addicts and alcoholics are so damn grateful is because we have been to the funerals, we have watched those around us fall, over and over, we have witnessed unspeakable pain, and we have walked to the edge of our own abyss and stared into it and only then, those of us who recovered, pulled back and rebuilt ourselves completely. We’re grateful because we’re not in constant pain anymore, because we found a way to live life on life’s terms, because we came to believe in something bigger and more profound than our own ego and our own pain. So many do not make it back and those of us who did only get a daily reprieve. This disease has no cure, only a daily discipline and a with that a profound gratitude. There is also profound pain with this life, because when you give up your crutch – alcohol, drugs, sex, shopping, food, gambling – you actually have to experience the emotions your crutch was protecting you from. You will ‘feel better’. You will feel pain better, sorrow better, and also love and joy better. I wanted to tell the man who wrote the blog this, but I didn’t.

And so it is for me with my son. I watched this disease kill my father. I’ve seen it tear apart families and now I am watching it tear apart my own family, my own son. I know there is a way through this, but I cannot do it for him, and as a parent this is what hurts the most. My own ego is upset that the break I was starting to believe was coming is not going to happen and I am profoundly tired. I want the easier, softer way, but it does not exist. The only way through this is to go through this, not over it, not under it, not around it, but straight through the fucking middle of it, again. Leaning into it, again. And I can’t imagine doing it all. I can’t imagine walking the path that is in front of me. So I will just do today. Just for today I will do the next right thing. I will go through the middle of this mess. I will lean into the discomfort and not look away.

Just for today.