Top 10 If I Knew Then

A while after my son died, his father asked me if I thought that it would ever really get “better” like the parents in his grief support group said it would. At the time I said I thought so , but to be honest, I wasn’t sure. Actually, I didn’t believe that it would at all, but I thought that sounded too pessimistic so I said sure it would.

Five years down the road now myself and that conversation is on my mind again tonight.

I’m not someone who is willing to tell anyone what they want to hear if it’s not true so, in answer to “does it get better?”….

“Better” is a word that is clung to by those who are hurting and want to have hope that the pain they feel, in that moment, will go away. “Better” is an ethereal concept that, whether they admit it or not, insinuates that there is an end to grief and the pain of the loss they are feeling.

Sorry, spoiler alert here: “Better” doesn’t happen like that.

If I could share anything, it would be this – let go of looking to when you won’t hurt anymore. Forget about when you will have a day that you don’t cry, or rage, or hate. This is with you for good; in some form or another, this will be carried by you for the rest of your life. How that looks though is different than the “Better” that we think it should look like.

Just like the good things that happen in our lives help to shape us and stay with us, so do the not-so-great experiences. Like deaths of loved ones…and that’s just the way it is.

For myself, “Better” is seeing the things I have learned as the last five years have passed.

My son’s death has shown me that I have a darker sense of humour than I ever thought I did and also that sometimes you do have to laugh or you’ll go crazy. (There’s a funny story about my son’s ashes, a hard corner and a seat belt that I’ll tell another time…well, I find it funny 😉 )

So, not sugar-coated and not all Pollyanna and happy, but here are my top 10 things that death and grief has shown me:

  1. That a heart can keep beating even after you are certain it has been destroyed.
  2. That you can survive what you never imagined that you could.
  3. That tears have no end.
  4. That time does not heal all wounds, but it will soften the edges of the pain.
  5. That grief is a tangible entity, and it is heavy.
  6. That even in the midst of the worst darkness, you can find something to laugh at…. sometimes,and that it’s ok when you can’t.
  7. That when you don’t know how you will keep going, you will. Hope doesn’t always look like we think it will, and that’s all right.
  8. I have learned that asking “Why?” may be pointless, but you will anyways, over and over again.
  9. I have learned that you will never forget.
  10. I have learned that life does go on, and it will never be like it was…but that doesn’t mean it won’t or can’t be good.

Bonus point 11.

I have come to understand how a person can hurt so much that they would rather just not wake up the next day. I have learned that you will be glad that you did make it through that night to see the next day. You will learn to live with the grief.

 

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The day before

It was five years ago this evening; the last time that I saw Willie alive.

People tend to focus on the day that someone died when they look back on the passing of someone they have lost. I know I do. February 1st 2012. That was the day that Willie died. That day and the memory of it are something that I live with every day since.

What still catches me off guard though is how much the anniversary of the day before hurts. It was the last day that life didn’t include this pain of his death.

That was the day that everything seemed to be on the upswing, small as that arc was at the time. January 31st was the day that I got great news about getting Willie settled for school in a program that would allow him the flexibility needed to work with schooling and continuing to try to manage his mental health issues. I had a just finished unpacking from a move and was starting to feel like we could settle in there. It was a day that my schedule at work had run on track and I was feeling optimistic that life, as it had been, was starting to “normalize” finally. After a few months of chaos and more stress than I ever thought a person could live through, that day felt like there was a light at the end of the tunnel.

Willie had an appointment that day with a new therapist who was going to be working with him on some behavioural therapy methods and he was agreeable to the idea – that alone was a comfort. I had sat and watched him and his youngest brother play together in the waiting room while Willie waited for his appointment time. I remember whispering to his Dad, who came along that day, how neat it was to see him laughing and smiling again. I felt hopeful.

Hopeful, even though there had been glimpses of what still was inside of him – even that afternoon. As I picked him up and we drove to the appointment, I blithered on about the school and the options and how great it was that it was taking shape the way we needed it to. He nodded and mumbled “It doesn’t matter”. His face was turned away from me as he went on to explain that he was happy that I was excited but that it just didn’t matter – he wasn’t going to be around. “I know it’ll be hard at first but it’s for the best for everyone – and for me.” was what he said to me. As we pulled into the parking lot I finished my response of telling him he was wrong… that a day with him not around would never be a “better day”. I told him to stop talking like that – that we were seeing someone new and that it would get better… I told him to hold on and to have hope – to believe that it would get better. He shrugged and said “yeah” and I knew, even then, that I couldn’t promise him that it would all work out. I wanted to, but he wasn’t stupid – neither was I, so I just told him to promise me that he wouldn’t give up. I’ll never forget that he never answered me on that one. He just started out the window.

After the appointment, as we stood outside the building and said our goodbyes before he left with his Dad for a dinner out to one of his favourite place, he was different than he had been the last few months. He stooped down to say goodbye to his little brother. He hugged him and said |love you, little buddy” and messed up his hair a bit to annoy him as he laughed. I grinned and thought how great it was to see him being so affectionate and so happy again. I remember thinking to myself that it was all going to be okay, that he looked like himself again.

I moved towards him to hug him and he backed up, away from me. I didn’t push it and just said “love you, I’ll call you in the morning”. He looked away, said “yup” and turned to leave.

That was it.

The next time I would see my son, it would be in the morgue at Vancouver General.

I drive past that place when I go visit his brothers now. Most times, I take a back street and a different route, out of my way, to avoid having to pass by it. It hurts too much to glance and see the spot where he stood.

Today, 5 years later, as the hour approaches the time that I last said goodbye to him, I see the sun starting to dip and the light starting to fade and it all comes back to me and I remember him and I miss him.

Let’s Talk – A Different, Not So Easy to Look At, View

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.

journal-capture

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.

 

A voice

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.

Yes you can, and you will

For those who lose someone and think they can’t go on.

 

A comment that I read on social media today made me actually speak out loud to my computer. It was a comment that someone made on a thread that was discussing the latest celebrity passing. Debbie Reynolds, having just lost her daughter Carrie Fisher the day before, had passed away and this person expressed her belief this way: “I would die after burying my child too.”. The words “No you wouldn’t” flew out of my mouth. There may have even been a hand gesture at the screen. Ok, more than maybe. There was, and it was dismissive.

I can absolutely understand this sentiment that this person stated. Losing a child is regarded as the worst thing that can happen to a parent – and it does indeed suck in a huge way like nothing else – and that is an understatement of epic proportions! However, like all things in life that we don’t think we can live through, we do. Trust me on this one, sometimes you wish you wouldn’t make it, but you do.

Having been there myself, there were many time that I wished that I would just not wake up the next morning. Actually, more than wishing, I  wanted that. The option of waking up every day and feeling as horrendously as I did that first little while was not an option that I wanted. Nope, not even one little bit. Being healthy and generally ok physically though, I did keep waking up everyday. Waking up and still hurting so badly that I felt like I would die. Waking up and hurting so badly that I wished I would die so it would end. Not because I didn’t want to live, but because I didn’t want to live like I was – having lost my son.

Those wishes didn’t come true though. Not in the way that I wanted then, but they have come true in some manner.

I don’t wake up every day hurting as much as I did in that first while. Some days I do, and I would be lying if I said that it never hurts like that anymore. It does – and it always will, I think. It didn’t kill me though and it won’t.

I remember a conversation that I had with my sons father about a couple of months after our son died. At the time we were getting together to talk and share our grief (we had been divorced for many years). He asked “What if it never gets better? What if it never gets easier to live with? What if all those parents who have lost children who say it gets easier are lying? What if how it feels right now is how it’s always going to feel?” I assured him that he was wrong; that of course it would get easier, blah blah blah. The truth was that I didn’t know if it would and how I felt then, I sure didn’t believe it myself. I also knew that he needed to hear that his fears were unfounded. So that was what I told him. For the record, I don’t think he believed me.

Almost five years later now and I can say that, for me, grief has become something that is manageable – most days. I can’t speak for him and we haven’t talked in awhile so I’m not sure how he’s doing to be honest. I can say though that, now, I do believe that those parents who say it gets easier to live with, probably aren’t lying. Does it get “Better” with a capital B? Mmmmm, that’s not something I can answer because that concept (to me) infers that the “issue” is resolved, and death is one issue that won’t ever be reversed or resolved. So I’ll leave “Better” up to each person’s interpretation.

I can say though that when you lose someone and you’re thought is “I can’t live, I can’t go on”, I want to remind you that “Yes you can, you will”.

Can a person die of a broken heart? I believe they can in some ways. Debbie Reynolds was 84 and yes, it is very likely that the stress and shock of her daughter’s death tripped the wire that was holding her in this life.

Can a person choose not to live because of a broken heart?  Yes, and that’s worse than them dying because of it, in my opinion.

You can’t choose to not hurt, but you can choose to hurt and live anyways.

Yes, you can, and you will.

Ripples and Differences

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.

Do What You Can

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.