Today, on what would have been Willie’s 22nd birthday, a look back on a post from a couple of years ago. I’m finding a distance in the grief today that is hard to explain so I’ll just leave this here: A Now That Doesn’t Exist
Today, on what would have been Willie’s 22nd birthday, a look back on a post from a couple of years ago. I’m finding a distance in the grief today that is hard to explain so I’ll just leave this here: A Now That Doesn’t Exist
Today is a certain company’s marketing day with the tagline of “let’s talk”. It’s regarding mental health and before I get going, let me just say that I do think that it’s a great initiative geared towards reducing and (fingers crossed) getting rid of the stigma associated with mental health issues. It is also about trying to make those who live with, and struggle with, mental illnesses not feel so alone. It’s about trying to bring awareness to mental health and the range of mental illnesses that afflict so many. All great reasons for the initiative, and ones that I can certainly get behind. So why am I sitting here this evening feeling so frustrated with it all? Simply put, because mental illness isn’t as “pretty” as it’s been marketed to look like and that is part of the reason why there still IS such a huge stigma attached to having and living with mental illness.
So, let’s talk. Or rather, I’ll write and you can read – or not. Let me open the pages of my son’s journals tonight to you and I’ll share one point of view of the reality of mental illness.
My son struggled with his mental health. He did for years before the day he finally told me was scared of his own mind and that he wanted to die – and that he wanted help to stop himself from doing that. Reading over his journals that he kept during the last year or so of his life, it’s clear that he was dealing with mental health issues that were hidden for a long time. He admits it so it’s not rocket science to notice it. It’s laid out, simply and plainly, that he needed help – help that he did want and he did, eventually, ask for. Maybe it was too late by then though. Like a person who ignores ever-worsening physical symptoms of an illness they suspect they have that they are afraid to have confirmed, maybe he waited too long for help to be effective. Or maybe, even if we had gotten him help two years earlier, at the first signs that he noticed – but that he never shared – it still would have ended the same way; with a steady progression through illness to his death by suicide. Who knows. To be honest, tonight, I don’t really care to even look deeply at that shadow in the closet. Moving on…
His journals speak volumes, literally, of mental health and its twists and turns and the torment that it caused inside of him.
Sometimes it’s sadness that is in his words; he doesn’t want to die and he knows he’ll miss people that he loves. He knows how much we’ll miss him too. His words tell about his feelings of love for his family and how badly he doesn’t want to hurt them…us…. his brothers, his dad, his grandparents and myself. He wants to live and be happy but he doesn’t know how to and he can feel himself slipping away from the grip that he has on what hope he has left. He can feel his mind slipping out of his control or understanding. He speaks with such clarity at times in his writings.
Sometimes though, his words make almost no sense. They are rambling, disjointed tirades that careen from subject to subject. Some full of hatred so intense that his pen has literally ripped the pages where he has tried to convey what he wants to say. Vile, angry words and threats litter the journals seemingly without connection or sense to any reality or reason. The dichotomy of his entries are hard to read through.
His words are mostly full of fear though. Fear is what underlines it all. The fear that he has of his thoughts and his mind and his actions. He voices very real and vivid fears that he has about what he will become, what his life will be like. He talks about how he is afraid that he will hurt other people, people that he cares about even. It’s not pretty, it’s not poetic, it’s blunt and scary. He voices the terror that he has that he will kill, that he doesn’t know what he is capable of because he doesn’t know what his mind is doing and how it is changing. He is scared. Scared enough that he writes the phrase “suicide is better than homicide” more than once when talking about how he just doesn’t know what to do.
He talks about being hopeless.
His voice tells about his regret that he won’t be around to see his little brother grow up, but that he knows it’s for the best, no matter how hard it will be. He rages in his journals about how unfair it is – that he doesn’t know why he is the way that he is – and how much he hates himself. How he just doesn’t know how to get better – different. He is sorry, over and over again for who and what he says he is. Apologies are rampant throughout. He is sorry, but not enough to not kill himself. For that, he apologizes for as well.
His journals are scattered with drawings that he has done. They are violent, bloody, morbid depictions. Often without explanation or words to give meaning. I can’t make sense of them and I wonder if even he could have when he drew them. The lone image of a crudely drawn, yet pretty, daisy in one journal is a stark contrast to the death and horror of the others. Another example of the contradictions that exist throughout.
So there is his voice, in a roundabout way. Uncomfortable and scary and awkward. Words that hit too close to home I think for many of us. Words, and the images that they conjure up, that don’t feel good to hear or read.
While we all “talk” today to end the stigma, it’s time to really look and see that what is being fed to us by the the sleek, smoothed out version of mental health issues that greets us in most of the advertising spots today is just one slant of it all. It’s not only sad-looking women gazing out of softly curtained windows while their concerned looking family looks at them from afar (cue soft music in the background here). Mental illnesses look many ways – not all of them ways that we want to see – a lot of them make us want to look away actually. But we have to see, and talk about, all the manifestations if we are going to work to find ways to help them. So there’s my little addition to the “let’s talk” day.
What is a voice? It’s what we use to speak; to convey so much – thoughts, feelings, emotions, wants, needs, fears, joys, sorrows. All given life by our voice.
Sometimes our voice is so quiet that we can’t even hear it ourselves, never mind have it audible to others, especially those that we want to hear it. Sometimes it’s so loud that it’s all we can hear and we crave the silence that comes when it is squashed down and muffled by the distractions that we all become so adept at using.
Voices rise and fall and change. They shift and they are fluid like the waves in the air that carry them. Voices can be silent too though. So much spoken without a single sound. Still a voice, still carrying a message.
As I read little pieces of my sons journals I hear his voice. Not his spoken voice anymore but his message carried in his writings. I hear his confusion and his frustration, his yearning for it to all not be how it was for him – for us. I hear the glimmers of hope that he still had, and I hear how that hope faded as the weeks slipped into months and he saw no change for the better in his mind. I hear the sadness that he felt as he heard his own voice, with awareness of his mental illness that grew inside of him, that he felt WAS him. I hear his pleas for help, and I hear when he decided that he knew the answer to his plea. I hear, in his words, the pain that he felt when he surrendered to that decision.
I have kept his voice from his journals so private and in doing so, his voice is silent in a way. I wonder sometimes if that’s the right decision. The first time I heard what he had to say I was shocked and, honestly, I recoiled from it. The raw, violence of his voice, the pain that seared on the pages in his voice scared me – and still does. The desperation and fear that he gave voice to on those pages tore at me and ripped me apart inside. I sit back now, 5 years later, and wonder if maybe that voice, and what it evokes, should be louder. Not so private and not silenced. He died but his voice didn’t.
After Willie died, one of the things that played over and over in my mind was the usual grief fueled mantra of “something good has to come out of this” aka “this has to have some meaning, it can’t just be what it is (which you don’t even know what it is)”. It is the mantra of every grieving survivor of loss – more so of those who have lost someone in a tragic or sudden manner, especially someone young.
I clung to that like a life raft at times. That someday, somehow,in some way, his death would have meaning and it would serve a purpose. A purpose that would bring happiness or solace to a person’s life in the same magnitude that it had brought pain and sorrow to mine and my family’s. That it would be a catalyst for change in policies and systems that needed it the most. A wonderfully rose-coloured view that gave me what I needed at times to get through nights that blazed with lonely hurting. A wish that, I knew, held promise like a sieve holds water.
Aside from this blog, which to be honest, I frequently consider shutting down because it feels like it doesn’t have any reason to be, I haven’t done anything. Aside from this blog.
There are parents, friends and family members who have created fundraisers, walks, awareness building events and the like as their way of making the death of their person “mean something” or “do some good”. They speak or give presentations or write for publications that shine a light on the tragedy or the injustice that caused their loved one’s death. They expose and discuss and petition for change in the gaps in resources, funding, hospital beds, out-patient services, access to care… the list is endless and varied. They open the lines of communications, they give voice to those who can’t speak anymore. They shine a light on the things in the shadows. All great work and yes, sometimes, changes are made and impacts happen.
I’ve seen the almost manic pursuit of trying to realize the dream of making their loss into something that make sense. Of have it not be for nothing… because if it doesn’t have some good come of it, then what? What is it but a senseless and unfair death that shouldn’t have happened? What do you do with that, how do you figure out how to live with that?
You just do, because the truth is that no matter what difference you make, it will never make the one difference that will make it better for you. It won’t bring them back. Reality check – it also may never stop it from happening to someone else. Life isn’t always fair and death is part of it and sometimes, you just can’t do anything about it. I’m not saying we shouldn’t do what we can though. Reaching out, connecting and shining a light can do things, sometimes.
But you know what it can do, what is has done, for me sometimes? It has shown me that thinking on the small and personal level is where it matters, for me. If I think about the massive shifts in policies and resources in the medical system that need to change – it’s overwhelming and literally depressing. The realist in me says to give my head a shake if I think that any significant changes will EVER be gained. What can be gained though is smaller and yet, so much larger in so many ways.
Having someone message me after an entry and tell me that they don’t feel alone; like they are the only one who feels how they feel…. having an acquaintance come to me in person when we run across each other and share how she never knew that we shared this commonality of grief until she saw my blog entry via social media… having a friend reach out when her daughter expressed suicidal thoughts because she knew that I had been there and that I knew what she was going through…hearing the strength in her voice after that conversation and knowing that sharing DID make a difference to her.
These are the ways that differences are made, that some good is found in the bad. We may not be able to do much, but we can make sure that we aren’t silent. We can ensure that no one ever has to feel like they are alone. Sometimes, all we have is the ability to share and come together, and the power of that is immeasurable. So, we talk and we share and we can’t hide; because people who need someone live with enough shadows as it is, we need to be the light for each other.
P.S. I came across this before and it’s worth sharing. Impact, we all have it, and yes, the ripple effect works for hope and hurt.
It was 5 years ago this week, last Sunday to be exact, that I had a note given to me by my son, Willie. It was in response to an argument we had had that evening and in that argument I had said to him “What is going on with you?!” You see, he hadn’t been himself for months. Many months. He had been moody and sleeping most of the time when he wasn’t at school (which he had also started to skip – which was unheard of before). He snapped at his brothers more than the usual bickering that was fairly common-place in a house of 4 boys. He had been mostly communicating through grunts or eye rolls or silence and even that was escalating to slammed doors and him storming out of the house. Standard “teenage” behaviour but it just didn’t sit right with me. On this evening in particular, he had responded to a simple question – about something so trivial that I don’t even remember what it is – with a completely out of control reaction. His voice was shaking by the end of his tirade and my son was close to tears and standing in front of me, clenching his fists and fighting to not breakdown. I uttered the phrase that I did because, honestly, I was at a loss as to what he was going through and I knew that it wasn’t something as easy to explain away as him being 15 years old and full of hormones.
His response was quiet. He stood in front of me and said simply “I can’t tell you.” So I said what the first thing that popped into my head. I told him to write me a note; write it down instead of telling me face to face. I told him that it was okay if he couldn’t talk to me but that he had to let me know what was up. He just nodded and walked away to his room. No slammed door, no stomping, he just walked away.
A few minutes later he came out with a piece of paper in his hand and he walked into the kitchen and placed it on the counter. He looked at me as he walked past me again and told me it was there and I could read it – or not – he didn’t care… and back to his room he went. As soon as his door closed I was up and in the kitchen and had the paper in my hand. It was a concise and bluntly worded note to me. You know the phrase about blood running cold? That note did that. As a mother, to read it, scared me. I wasn’t sure what I expected; maybe a nasty rant about how annoying I was to him or how controlling or strict I was or how much he hated the rules of the house… I don’t know what I thought I would see, but it wasn’t what I saw. Instead, it was a clear and simple request for help.
In it, he said, amongst other things, that he was sure that he had a mental illness but he didn’t know what kind. He said that he was suicidal and had been for a long time – that it wasn’t just a phase. He said more, and he ended with asking for help. He said, literally, “I need help”.
5 years ago, I believed that I could find him the help that he needed. I believed that there were resources that would be easily accessible and that those resources would be able to help my son get better and that it would all be ok. I had, after all, just recently gone through a medical issue with my oldest son. Just the year before, Willie’s oldest brother had developed a large tumour in his neck. We went from the walk in clinic to being fast-tracked in the ER to seeing an oncologist within 24 hours. Biopsies and surgery ensued and all was good. Not great, there were glitches here and there and I had to advocate more than once for him and be a bit pushy but we navigated it and he got the care he needed. The end result was a larger than anticipated scar after surgery and being told that the pathology report was the best kind of “we don’t know for sure but we are certain it’s most likely not malignant” that we could hope for. 6 years down the road now and he’s doing great and there is no cause to think that Christumour (our pet name for his lump) will ever come back. All good.
So, when Willie came to me with what was, essentially, a medical issue that needed to be dealt with, I thought that I would go to the doctor, bringing the note with me like some sort of written version of a snapshot of “what IS this?” ailment and that we would be sent to someone and voila! He would get care and treatment and it may not be easy or quick or without glitches, but that it would happen.
5 years later and I hate to admit it but I don’t believe that anymore. I don’t believe that the “glitches” we ran into were anomalies or that we just had bad luck with finding or accessing resources. It’s a long story and maybe someday I’ll put it all together and try to make sense of it but the short version is that I’ve come, not to bitterness, but to reality about the mental health care system that we have.
I see a lot written and promoted about changing “the system” and about increasing resources or access to resources for people who are dealing with mental health issues. The more I see, the more I am aware that it hasn’t changed and that, in all likelihood, it won;t.
I’ve struggled over the past few months with a sense of despair almost in coming to terms with this. Partly because I did what every person who loses someone does. I thought that living with grief would be easier, better, I don’t know what, if Willie’s death “meant something” or if something came of it that would make it at least not be in vain. The standard reaction that happens that is the attempt to not have a death just be what it is; reality and a part of life.
The fact is that, on a large scale – the scale that we all want to see change -, there won’t ever be the changes that are needed to really make a difference. Part of that is due to the fact that mental illness isn’t treatable like a physical illness. Rarely is there anything like a conclusive test that can ascertain what is “wrong” and even more rare is it that medical professionals have any sort of proven treatment protocol that they can prescribe. Part of it is due though to the sheer size of the system – both the way it is and the way it is needed to be. Frustrating but true. Reality bites. Not liking how badly it sucks doesn’t change it from sucking.
So instead of being dragged down even further than this time of year is already dragging me by this reality, I turn to the idea that was presented to me a couple of years ago. At a mental health resource day that I was invited to attend, one of the youth mental health workers gave me this advice (I’m paraphrasing here…) Honey, all we are doing is rearranging the deck chairs on the Titanic. We may not be able to stop it from going down but we can make it a bit better, however we can, while it happens. While saving the ship that is mental healthcare is beyond what each of us can do, we can each make an impact on someone, sometime, somehow.
Do what you can; be kind, be a shoulder for someone who needs one to lean on, reach out , or reach back to someone grasping for help, be an ear for someone to bend to lighten their load a bit if they need it, be an advocate, be what you can to someone who needs someone. I am trying to focus on making a difference where I can and not thinking about where I can’t.
You never know how something you say can affect a person. This is one story of that truth.
I was back at work for the first time since my son had died. I worked, managing a fitness facility on-site in a corporate environment. My job was one where I saw the same people, day in and day out. I was at a number of sites with the company that I worked for, but this day I was at what was one of my “home sites”. A place that I had been at for over 6 years and one that I knew everyone by name. Aside from managing the site, I also worked the desk, taught classes, did one on one training sessions with clients and generally was around, a lot. My nature is one of being very open and sharing. I talked about my kids and life and connected with the people in the gym. They shared about their lives and kids and spouses and the usual banter was always ongoing. Many of the people in my facility were more than just clients in a sense, I had known them so long and we had shared so much. I may be an introvert but I love connecting and I loved my job and my sites.
I had missed work and even though I knew I wasn’t up to teaching, I wanted to get back to trying to have some sense of normal after Willie passed. So, about a month after, this was my first time back. The plan was for me to come in for a few hours and just see how it went.
Just before the lunchtime rush started, the first few regulars started to trickle in. There was the awkward, not-sure-whether-to-ignore-the-obvious encounters. I smiled and went along with it. There were the openly almost weeping sad, pitying faces that I hated more than anything at that time (and still do). I hugged and cringed inside and got them on their way.
Then there was one of the regulars, I am going to call him Sam. Sam was someone who was quiet and polite. He had been a regular and we knew each other by name. We had chit chatted but he had never been really talkative beyond the standard level of polite conversation. He generally kept to himself and, while never rude, was never one to actively reach out to start a conversation either.
This day he came in and walked to the desk to sign in before going to get changed and start his work out. He was clearly a bit taken aback to see me and he smiled and said hi, like he always did and he signed in. He paused a bit but then just turned and went into the change-room. I let out a breath I didn’t realize I had been holding and realized that maybe this was not such a great idea to have come into work.
A few minutes later, Sam comes out, towel and iPod in hand. He starts to walk past the desk then stops and turns back. He asks if he can talk to me for a minute, in private.
What Sam shared with me with was this: He didn’t know details, just that my son had died, by suicide. He didn’t want to know details or what had happened. He just wanted to tell me that it wasn’t my fault. He said that ever since he had heard, he had wanted to reach out but wasn’t sure if he should. He shared that he had been a teen that had struggled with depression and suicidal ideation. He had wanted to die. His parents had told him how much they loved him and how it would get better and that he would be okay. He told me that, in those times, it didn’t matter to him what his parents said. What anyone said. He said that he made it out of that and he is alive and glad that he didn’t kill himself. He said that what I needed to know was that it had nothing to do with his parents. That they didn’t stop him, they didn’t help, they didn’t impact it. That if he had killed himself, it would not have been because of lack of them trying or it not being “enough”. He wanted me to know that he had been how my son had been. He wanted me to know that it wasn’t my fault.
He was shaking and holding back tears while he talked to me. We both were. He shrugged and ended with a simple “there was nothing you could have done, it’s not your fault” and he walked away.
I was more touched by this than he could have known. He probably still doesn’t know.
He wasn’t someone saying they knew how I felt… he was someone sharing how the other side of this loss felt, in a way that I hadn’t thought of.
I can’t imagine what it took for him to open up and share that part of himself. I hope he knows, somehow, just how much it meant to me, and how much it still does.
The connections we make and have mean more than we are aware of at times. We may think that a kind word or action (or a harsh one) has no impact but we are wrong. Don’t hesitate to reach out, it just may make a difference more profound than you imagine.
Thank you “Sam”, and I’m glad you made it too.
So instead of new words, and thoughts, this.
It’s World Mental Health Day today. A day that is to bring awareness and understanding and support for mental health issues. Instead of the writing I had thought about doing on change and needs and the like, a little something different.
So many people I know struggle and live with personal mental health issues or the impact of those they love who have their own battles.
Today, words are coming hard with emotions on their heels so I’m pulling some older posts that tell what I can’t today.
Hold each other today, in our hearts and souls and bodies if you are able to.