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
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:
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.
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.
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.
I dreamed of you last night. You were younger than you were when you died. Not by a lot though. You were like you were before you got sick. You were being silly and a little bit of a sarcastic trouble maker. You were teasing your brothers at dinner. They were the age they are now though. Not the age that they were when you died, or the age you were in the dream.
You noticed. You turned to me, a laugh still on your voice, and asked me: Why am I only 12 years old? Why aren’t I older, like I should be?
Why am I only 12? Why am I sometimes 5 years old, or a baby, or 10, or 16? Why?
I smiled at you and said simply that it’s because you’re dead.
You are whatever age you are in our minds when we are thinking of you, when we dream of you and remember you.
Sometimes you are 16 and at the end of your life, angry and sad and unreachable. Other times you are that little boy who held my hand and sang silly songs as he walked beside me grinning as I laughed at you. Sometimes you are even what you never will be, the young boy grown into a man.
You looked at me and suddenly you were 16 again. Dressed like you were when I said goodbye for what I didn’t know was the last time. You shrugged, like you did a lot back then, and you smirked and said that it makes sense. Since you’re dead.
“So, Lola, have you been cutting up your arm?”
That was the comment from the Customs and Border Patrol guard at the USA/Canada border last Friday.
While my partner and I sat in our car and answered the usual questions, that one was unexpected. We were all set for the usual questions about her status as a permanent resident and her non-Canadian passport. All ready for the direction to park the car and head in for her to get the required entry document. All set for that. Standard procedure for crossing the border for her.
Not at all ready for the question directed at me regarding the scars on my arms.
I had no choice other than to answer his question though. So a simple answer of “yes” and I hoped that he was just a not-so-sensitive person who chose to make a not-very-appropriate comment and that would be that. No such luck.
It was followed up with, “Looks like those must have hurt”. Again, my measured and as-simple as-could-be response was provided.
“It was so long ago, I don’t recall”. Trying to hide that I am incredibly uncomfortable with this attention and line of questions. He, I’m sure, knows exactly how uncomfortable he is making me though. Which starts the feeling of anger that I know is not going to be helpful.
He flippantly hands back our documents and directs us, as expected, to park and head in for my partner to get her document.
As we park and walk, I try to pull myself back together from the shock of the two questions and my partner and I agree as we chat that it was out of line and inappropriate. But, we also agree, what can you do? They can ask what they want. There is a huge line up inside and it takes enough time to get to be seen that we have both calmed a bit.
We approach the guard to have the usual done. The standard questions of where are you going, what’s purpose of your trip,how long are you going? His demeanor is a quiet mix of boredom, annoyance and general irritation towards the entire process. He dismissively tells us to sit and he will get back to us. He keeps our passports and documents and the paper I had given him with the address of where we are heading for the weekend.
We expect the next step will be, as usual, my partner to be called back up for fingerprints and a picture and the paper slip to pay and then we will be on our way.
Not today though. After a few minutes, he calls me up.
“Lola, come here”. I look at my partner and we both are a little taken aback but I get up and go to the counter again. The questions come fast and bluntly.
“Tell me the story of what’s up with the cuts on your arms?”
There’s no story. They are scars from some cuts.
“You need to tell me more.”
I’m not sure what you mean. They’re old scars from cuts, that’s all.
“Were they self-inflicted”
“What medication are you on?”
*He looks up from where he is sitting and tilts his head*
“You expect me to believe you aren’t on any medication?”
Yes, I’m not on any medication.
By this point, my heart is pounding and I am doing my best to keep my voice level and my mannerisms as normal as possible. It is becoming very clear where he is going with his questions and my mind is racing along with my heart.
“What’s the name of your psychiatrist?”
I don’t have a psychiatrist
*again, he looks up at me and sighs*
“The name of the physician whose care you are under?”
I’m not under a doctor’s care
“Were they from suicide attempts?”
No *I briefly think of making a joke that if they were, I could win the prize for worst attempt ever for where I cut, but I think better of it and just go with the “no”*
“Then why did you cut yourself?”
It was a particularly rough time in my life and I just did
“Were they done more than 5 years ago?”
Yes *lying, it’s clear at this point that I am actually running a risk of not gaining entry is how it is starting to feel*
“If I check your permanent medical file, will I find records of suicide attempts that you have not told me about here?”
No. There aren’t any.
*He sighs loudly and asks me to read out loud the address where we are going that is printed on the paper we are heading* I do so and think the questions are done. No, they are not. He’s not giving this up that easily apparently.
“What do you do for a living?”
I manage a clinic. A paramedical clinic in Victoria BC
*He smirks a little* “You hold down a job huh?”
Now at this point I am seething with anger inside but trying to stay calm. He then starts asking again about medications in the car etc and brings my partner up. After some standard but still insulting questions, this time directed to her (“16 years in Canada and STILL not a citizen huh?”), she is fingerprinted, photographed, pays her fee and we are on our way.
There ends the most blatant example of judgement and what I took as a personal harassment.
When I try to take apart the layers of what exactly it is that I am so angry about in that interaction, I find that it is so many things.
The fact that two border patrol guards felt that they could openly and without any reason, interrogate me on something that has nothing to do with my legal request to enter the country is clear. They felt that they have every right to question me, or anyone, on anything – no matter how personal or applicable (or not) to the situation. The disgusting truth is that they can do just that. They hold the power to deny entry, to turn you away. Possibly for more than just that one time even. As my partner pointed out when I asked “who the hell does he think he is???” … he has the uniform and the gun and the power. It really is that simple. And it really isn’t right, but it is the way it works.
It was tears that I held back as we left the building and made our way towards the car to leave. As we walked past other guards I made a point of smiling and chatting and looking as unaffected as I could. Acting as opposite as I felt inside. The overwhelming sense was to just get as far away from there as I could, as quickly as we could. I felt embarrassed and I felt shame, but most of all anger was building up.
By the time we reached a rest stop two minutes away, the tears hadn’t come and they weren’t going to. Instead I had discovered just how furious I was over the questioning. Who were they to make a judgement about who I was based on my scars? Because the truth is, that is what they did. They saw scars that are clearly from self-inflicted cutting, and they made an immediate and decisive judgement that I need to be, essentially, screened. Screened for what? To determine if I am mentally ill? If so, how so? Am I going to be a danger to myself or others? Am I going to harm myself – or kill myself – while in their country? Is my mental health status something that should be a deciding factor in whether or not I can be given entry to go camping in their country? If I go by the questions that I was asked, then the answer to that is yes; and that is disturbing.
I have struggled with shame about my scars. I do hide them at work, and for reasons similar to this. I know people judge and assume when they see them. I know they are viewed as physical evidence of mental instability or weakness. So I keep them hidden when I am at work because I am in a position of management. I can’t be seen as weak or incapable or unstable. All things that we all are, from time to time, and all things that these scars are perceived as proving. My moments of weakness do not, in any way, diminish my strength. Ever. Yet that isn’t how our culture sees this.
So we drove away and I was angry and felt violated in a way. I was offended and indignant at how I was treated and questioned. I am a 44-year-old woman, I know and own my strength. I know what demons I fight and what road I walk every day and I am finally at a point where I hold my head high and rarely ever feel shame anymore. I have my moments but they are fleeting. What if I had been a young person though and had to face that? What if I was still very much in the midst of trying to not look at my scars because of the repulsion I felt towards myself when I saw them? What if I already was judging myself and feeling myself to be unstable, shameful, broken and wrong, like those guards tried to make me feel? What then? Who gives them the right to humiliate and belittle and almost casually decide to cause that kind of hurt to a person?
I could walk away and, while those feelings swirled and whispered, they were silenced and soothed by my resolve that I know I’m not those things. Even with that resolve though, I slipped on a long-sleeved shirt today to go into the store. Last week I wouldn’t have. And that makes me angry. Angry that no matter how I may see my scars and no matter how much I know I cannot be judged by what society says they mean – I still will be.
End the stigma of mental health concerns? Still looks like there is a hell of a long way to go.