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

how to save a life

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

How to save a life

How to save a life

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

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

How to save a life