forgotten words

Today, I realized that I had forgotten something. That almost never happens to me; I have a memory that holds onto things like a steel trap. Me forgetting something is a rarity to begin with but what it was that I forgot made this even more unbelievable today.

I couldn’t remember what my son’s suicide note to me said.

It’s not like I think about that note often anymore or read it – I haven’t actually, in quite some time. They are words though that I could have sworn were burned into my mind forever but today, they were just gone when I tried to recall them. Not all of them, but most. I could still see, sharp and bright in my mind.one sentence in particular, but the rest of it was just – gone.

It was a short note, a half-dozen sentences on a piece of paper. It is so like him, straight forward, to the point, and simple. It’s a note that I must have read and re-read a thousand times in that first year alone. It was very simply a goodbye note. It wasn’t meant to be more; he had left journals that spoke loudly and vastly about his struggle with mental illness if I wanted to try to understand the “why”. His suicide note was just to say goodbye and tell me what he wished for me after he was gone..

So tonight I went looking for it. I didn’t have far to go, I know exactly where it is – that much is still there in my mind at least. I read it and re-read it and remembered it like it had never been forgotten.

It’s private and it’s going to stay that way for now. The words I will share though are the ones that were his last to me in that note “I love you forever”. Those were the ones I hadn’t forgotten and never will.

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To reach out or not?

I see the posts online. They are sometimes from friends and other times they are from people that I don’t know personally. A friend of a friend and their post pops up on my social media feed.

They always make my heart jump a bit and cause my stomach to do a little flip. The posts that ask for help or understanding or thoughts of peace or just simply anything that might make a difference. It’s the sharing of “I need help” that I can feel and understand.

I read the postings of desperation and frustration. Someone this person loves and cares so deeply for is hurting. They’re struggling and many times fighting for their life within the hell of mental illness.

I read the words and I remember that feeling. I can remember how badly it hurt to watch someone you love and feel helpless to do anything. To feel alone. To want to reach out, knowing you need to but not knowing how. Or not being able to for so many reasons that make sense inside the vastness of your own turmoil.

So I read these posts and I am silently applauding that this person has taken this step because I know how massive it is to do that.

I read, and I want to reach and hold out my hand and connect. To say I know, I’ve been there. It’s hell and it feels insurmountable but there ARE people who will be there to support you while you are there for your loved one. There are people who can be there for you, to hold space for you. I want to tell them that they are never the burden they might think they will be. I want to say that even if I don’t know them personally, I know them in a way because of this shared experience. That even if all I can offer is a shoulder to lean on in the virtual world, I’m there and so are others. Or to help them see that someone is there to listen if they want to say the things that are inside of them that are eating them up and that those demons are quieted – even if only for a bit – when they are let out into the light of day.

But I don’t reach out. Why? Because although I can offer understanding or support, I feel like I can’t offer the hope this person needs. When someone is looking for “it’s going to be okay ” I can’t give that. I can’t say that the fear that is so huge that they can’t or won’t even admit it to themselves, is unfounded. I am aware that the ending to my son’s story embodies the very thing they are trying to ensure won’t happen in their loved ones life.

I’ve sat before with other mothers going through this journey and have reached out –  and seen the look on their faces the question of how my son is doing now came up and I answered. When I had to tell the truth that he didn’t make it. That despite everything, he still chose to end his life and that he’s gone.

So I stop myself when I want to connect and support and offer understanding. And I don’t know if that’s the right choice or not.

Can she make a difference?

I was in the kitchen at work a few days ago and a couple of co-worker were having a conversation about her new position coming up in a different field of work. She is studying to work, eventually, in the field of mental health services.

I walked into the conversation just as she was expressing how excited she was to work in the mental health field. How she was looking forward to making a difference and changing the system. She bubbled with enthusiasm about how she couldn’t wait to be a part of “fixing the system and changing how people get the help they need”.

Blink. Blink. Combine some deep breathing and serious willpower and I was able to not lash out at her comments. I had no idea that my reaction to her remarks would be so strong and was surprised at where they came from. Where they were hiding is more accurate for how it felt to me. The anger that I felt and the frustration that came up was fast and violent.

I tried to be calm and polite and not appear personally invested as I attempted to add my two cents. Not sure I pulled it off but the gist of it is simple.

She won’t change the system. She won;t fix it. She won’t change how people gain access to resources and she certainly won;t make a dent in the structure of mental health services. The system is unfixable on a core level. That’s sad and maybe fatalistic, but, I believe, it’s the truth. She can bring all of newly educated professional knowledge of resources and studies and what treatment option should be available and to what demographics and won;t make any difference in the day-to-day access or execution of services for a person needing help.

She will start fresh and excited and ambitious and she will, all too quickly, come to see that if things could be changed by that, then they would have been, long ago. But they can’t be changed.

I watched her face as I said a milder version of that and saw her shock that I wasn’t just agreeing with her and telling her that yes, she would, and wasn’t it exciting??!! She smiled nervously and said that she just wanted to try and that she knew she would make a difference.

Yes, I assured her, you can.

Not to the overall structure, but on a personal level. You can touch someone with your compassion and your desire to help. You can be the person who a family looks to and sees the face instead of the machine of mental health services. You can hope that one person or one family will feel that you made an impact and that you made their journey maybe a little easier or the answers a little lighter to bear. See the trees and not the forest. You can look at the small victories and see that those are all you will ever be able to get or give…and you can feel great about them. Go in with that for your hope and your expectation and you will might not burn out so fast or too often (because you will eventually, make no doubt).

I have seen the jaded and tired defeat in the faces of experienced caseworkers and nurses; of ministry employees and hospital staff; of counsellors and therapists and psychiatrists. All of them knowing they could offer nothing more and that so much more was needed. I have seen the optimistic cheerfulness of the young counsellor as she patted my son on the back and knew, really knew, that she had done all she could and that it was all going to be ok – because she so clearly believed that the system was “working”. I saw the pain on her face a week later as she explained she was taking a leave of absence after the death of my son the day after their appointment.

As one social worker explained it me a couple of years after my son died; The ship is going down and there’s no way to get more lifeboats. All we do is rearrange the deck chairs and hope for the best.

 

Storytime

Time moves along and life goes with it. It’s been just over four years and I have been looking back differently this past little while. Looking back in a way that also look forward.

I have been going through old writing, organizing and sorting them as I try to combine computer files. It’s been stirring up a lot of feelings and it’s been forcing me to look back at some things that I have been very successful at shutting out the last couple of years. Remembering isn’t always a good thing I’ve discovered. I’m also seeing that to heal, you have to face things. I’m not a fan of that concept. Unfortunately, that doesn’t stop it from being true.

I came across a writing today from many years ago. A journal entry from when Willie was just a couple of weeks old. A picture actually of a handwritten journal entry that I made for him. A recounting of his birth. I did it for all my sons and I guess I had taken a snapshot of his to keep with his journals that I photographed before I took them to the hospital to be reviewed. I read it over and it hurts to remember that time. Not just that time but the loss of all that he was, and ll that he’ll never be. It also made me think though about the rest of his story. His too-short life and the tumultuous last few months of it before his suicide. A life is, after all, a story. After almost an hour scrolling through blog entries and writing drafts, I realized that I have no account of that. There are bits and pieces of it told in numerous posts and writings, but nothing that captures that journey that saw him move from a pre-teen boy to the 16 year old tormented by his mental illness who saw no hope to stay in this life. Nothing written to tell his story’s end. I also realized that needs to change.

It’s time to put it all together.

did you know?

did you know?

did you wake up that day knowing that you wouldn’t be there at the end of the day?

did you tidy your things and fold your laundry that morning knowing that it would be the last time?

did you have breakfast and think about the fact that it would be the last breakfast you would ever eat?

did you even eat or were your nerves so jumbled that you had no appetite like you often were?

did you shower and get dressed and give any thought that it would be the last time?

did you give thought to which clothes you put on, knowing that they would be the clothes you wore when you died?

did you think about who would be the next person to be in your room after you died, knowing it would never be you again.

did you think about how long it would take someone to find the notes you left in your drawer?

did you wonder how long it would be until someone found your body?

did you know that day that it would be the day that you finally would go through with it?

did you hope that it would be?

did you want it to be?

did a part of you wish that you wouldn’t be able to?

did you feel sadness that you hoped you would?

did you feel scared, alone, afraid to die?

did you feel peace and calmness instead?

did you wish that you didn’t have to be alone?

did you want comfort or was it solitude that you needed?

did you cry?

did you say goodbye?

did you know when that moment was there that it was your final moment?

did that bring you the peace you wanted?

did you think about the next morning, the sun rising with you no longer in this world?

did you wonder what was next, what was after your actions to close this life for yourself?

did you simply long for the end of what you could no longer endure living with?

did you find what you needed and wanted?

 

a now that doesn’t exist

I had a dream last night. A dream about Willie but not a dream like the usual kind I have that involves him. Not a nightmare in the traditional sense.  Not a dream of what was or of what happened but a dream that was of the now. But a now where he didn’t die. A now that exists with him in it, having not killed himself that day. 
I was sitting on bleachers in a school gymnasium. The old kind that pull out from the wall so that a couple hundred of kids can be grudgingly marched in to endure sitting on the cold and uncomfortable ridged benches. Made to sit through a speech or an assembly that they couldn’t care less about.
I sat, uncomfortable, feeling how sore I was even as I shifted my weight to try to find some way less numbing on my backside. I was leaning forward looking at the faces of the teens and trying to gauge their take on what they were listening to.
Listening.
I could hear his voice. Not quite like it was the last time I heard it. It was a bit deeper, stronger really is the right word for how it sounded to me.
Confident. His cadence in his speech was steady and smooth. My eyes trailed over the crowd and drifted to rest on him.
He sat on a single chair in front of the kids. Glasses, dark and classic frames. He was dressed simply and well put together. Jeans, dark and crisp. Shoes, loafers that were shined and obviously well cared for. A button down shirt, tidy and pressed. Open just a bit at the neck with the sleeves rolled up, immaculately done just so. Casual and comfortable but well presented. Clearly thought had been put into how he dressed. A young man, tall with a lean build and broad shoulders. A wide grin with a bit of smirk to it as he smiled often during his talk.  Nothing less than I would expect to see.
In my dream, there was the “him” that he was when he died. All the nuances that made him who he was when he was 16, just more defined; the few years of growing up in the dream had set more deeply who he was.

He held his hands loosely together on his knees as he leaned forward slightly while he talked. An easy gesture. He looked so at ease.
His voice though was what I couldn’t draw myself away from.

He was talking about the day he decided he was going to die.
The day that he made the choice to go through with what he had been wanting and planning for. He talked about the journals he kept that showed his spiral into defeat of his mental illness.

He talked about fear. His fear that he would hurt someone, that he wanted to, but that at the same time, he so desperately didn’t want to. He spoke of how afraid he was of what or who he would become as his mental illness grew. He told them of his fear of his own mind. How scared he was by the voices and by the thoughts that crept through his mind, unwanted by him but not able to be ignored. He told them of his terror that he was losing himself. He explained how deeply he believed, then, that the only option to make things okay was for him to be dead.


He spoke of giving up. Of just not wanting to ever wake up again. He shared that he held on as long as he could, until he just couldn’t anymore.
He told them how resigned he was to that day being the end. Not happy exactly, but glad; comfortable with his decision and certain it was the best choice. He told them how he tried not to think about being found.  But that it did worry him, how it would affect the person or people who were going to. He told them about how he tried to make sure it wouldn’t be too bad for the person who did find him. 
He read the suicide notes that he had written to his family. Saying goodbye and trying in some way to explain the “why”, even though he knew they couldn’t really understand. Wishing them happiness. He explained how badly he believed that it was the best decision he could make. He tried to express how sorry he was.
He took a deep breath as he paused in his talk and looked at the gathering of teenagers that sat in silence and listened to him. He told them how mad he was when he woke up in the hospital. Still alive. He told them that it wasn’t a magical moment of realizing regret and that all of his problems didn’t go away. He told them how hopeless he still felt then. He stood up and paced and explained how hard it was to decide to stay after that. How, living with a mental illness can be like being an addict; every day was one day at a time, and he had to learn to live with the reality that it would most likely always be that way.
He stopped pacing and stood looking at them all and he smiled. The smile of his that lit up his eyes with a spark that was so bright that it made my face light up even as I watched him. He said simply, how happy he was that he made it. That he was still alive.
……….

I woke up from my dream then. I awoke from a now that doesn’t exist and never will. That version of “now” can’t exist because that day, Willie did die. There was no waking up in the hospital for him. There was a police car waiting for me when I got home asking me if my son’s name was…. there was me frantically calling his dad only to be met with him answering with the words “I know, the police are here”…there was me arriving at his brother’s and grandparent’s home to break the news. There is a “now” that exists without him in it. There is waking up everyday and making the decision to keep trying, even though it’s hard, because that’s what I wish he had done.

Held accountable

Accountability has been on my mind lately. I’m not sure what has stirred up the issue again but it’s there. Front and center in my mind when it comes to grieving – again.

This isn’t a new issue for me when it comes to Willie’s care and his death. It’s something that I’ve pondered before here and it’s something that is back to nag at me again.

So the question I’m bouncing around is, is it time to finally let it go or is this something that I need to and want to deal with. I fought for months to get the records of my son’s care and treatment from his family doctor, the hospitals he was an in-patient with, the counselling providers that he saw and the government agency that he had care through as well. Months of frustration and paperwork and phone calls and ultimately meetings. Months that did, eventually, bring about chart records and treatment notes. Such as they were. Some of it redacted – government “cover your ass” in full swing. Most of it sadly incomplete and vague. Notes and records that barely touched on his issues and made sweeping generalizations and care plans that were formulaic and non-committal. Records and notes that left me more upset and frustrated than when I had started the process. So I put them away. I had spent a few weeks going through them and, to be honest, it wasn’t healthy for me then. It tore at me and ate me up inside. It hurt, it more than hurt. So I put them away. I organized them all and tucked them away along with his journals and his notes and the few mementos of his that I kept. I needed to not have that swirling about inside my mind and my heart anymore.

So now why, after over a year, is it back? I still haven’t taken them out of their hiding place. All quietly stored away, but starting to draw me. The nagging and wondering still there. The anger is back. Anger at the failure and the complacency of shrugging off responsibility that happened. Anger that startles me at times with how fast it comes up and how fierce it is. I don’t care that the family doctor has reportedly retired, I want him to be held to task for his actions in all this. I want to stand in front of him and tell him he fucked up. Yell at him that he was wrong – that he was a shitty doctor when he said and did what he did. I want him to feel his wrongness, I want him to feel accountable – because he is, in my opinion.

I want the therapists and counsellors and psychiatrists to see the course of their actions – and to see their role in the outcome.

I want the Ministry of Children and Family Development to see the disaster that is their organizational structure and how it executes the care that is needed – and not provided. I don’t want to hear anymore how they are fulfilling their mandate of care and treatment and how they ARE providing adequate services for everyone who needs it. I want the Ministry representative who sat with my son’s file in his hands – in the same room as me – and told me that he couldn’t let me see it to know that that isn’t right.

Is there legal recourse for any of this? Probably not. There’s no way to prove that a different course of action or treatment or diagnosis would have resulted in a different outcome. Mental illness is, in some ways, very different from physical illness. Yet in some ways, it’s so similar.

Would things have turned out differently if our family doctor had taken me seriously three years earlier when I first went to him? Maybe. Maybe not.

Would Willie still be alive had that family doctor not addressed his note to me – a note that plainly said he was scared and suicidal – with the comment that Willie was “bluffing and grandstanding – call him on it”. Maybe. Maybe not.

Would it have been different had the hospital psychiatrist looked at the journals I brought him instead of saying they were “private” (and keep in mind, at this point Willie was committed involuntarily under the Mental Health Act)? Maybe. Maybe not. I am certain it would not have been a generic diagnosis of depression and anxiety that was set on if they had seen the contents of those journals. Journals that clearly told of voices and fears of homicide and becoming a monster. Journals that openly referred to the only way out of his own head as being that of death. So maybe. Or maybe not.

We’ll never know, and that’s what’s tearing me apart. Again.