Good start, now make it better

I came across this link today on a Facebook page: http://www.sd43.bc.ca/District/Departments/StudentSupportServices/Pages/PositiveMentalHealth.aspx

It’s a link for the “Positive Mental Health Resources” that are available for students in the SD43 to access. This is the school district that my son was a part of from Kindergarten through to his death when he was in grade 11. The same school district that has yet to respond to an email I sent to his previous Principal (and 3 Vice-Principals) in June, outlining my feelings on how his passing was handled with regards to school notification and student resources… but that’s another entry to be written….

My initial thought when I clicked on the link and scrolled down through the numerous resources was one of disbelief and hope. I know that this hadn’t been on the website when I was looking for how to help Willie in late 2011. Hope that now it appears they have done some work towards making a change that will help students in need.

As I clicked on a couple of links I tried to get back to the main listing but I couldn’t remember what the main “tab” was that it had been on. I tried “Resources” as that seemed the most obvious to me… nope, wasn’t there. I tried “Programs” next … nope, not there… I tried “Schools”, nope, not there either. Finally I went through the “District Office” tab, found a “Student Services” link on the sidebar and that led me to a page where there still wasn’t the listing that I was originally on. Becoming frustrated now I noticed a link on that page for “Information for Staff and Parents”… I click on that and another sidebar comes up…. ah, one of them says “Mental health” click on THAT and voila! The page is there!

Well, of course! If I was a student searching for resources to help me with mental health issues I would most certainly be searching under those tabs and clicking through links that are marked specifically for “staff and parents”… makes total sense…Very rarely do I use the term WTF?… but this is one of those times that it fits.

I applaud the fact that it looks like there is more out there for kids who need it but one of the biggest problems is navigating your way to help when you need it most. It needs to be easy and simple and accessible. This is anything but. It’s a start, now make it better.

Redacted

Redacted: to edit or revise from an original form.

I received the long-awaited records from the Child and Youth Mental Health Services this week. After one denied request and appeal and a new request I was actually quite shocked to receive the notice that a package containing his records was ready for me to pick up. After an hour on the phone and speaking to 4 different offices to set up the appointment to pick up the records I headed off to collect what I had so desperately pushed to get released.

I wasn’t prepared for the emotions that would come over me when I held the package of papers. I cried and sat in the car, knowing that these papers told the story of the last short months of Willie’s life. That the documents in my hands were a recounting of the panic and the frustration that we all felt during that time, not the least of which was Willie himself. I already knew, intimately and minutely, all of the details of his care so I’m not sure what I was hoping to uncover by acquiring these records. No matter… I needed them to be able to put to rest my mind.
I let them sit for 2 days; not ready to open those pages and see again the pain and the struggle that my son and our family went through. Finally though, last night I cut open the plastic straps and slipped off the cardboard covers and started to read through.

I glanced over the cover page, thinking it was just a standard form letter of notice that my request had been fulfilled but as I skimmed I noticed the reference to the fact that Willie’s records had been edited to reflect what I was allowed to see based on the Freedom of Information Act’s section pertaining to his right to personal privacy… to explain my response as shocked is an understatement.

This is the same agency that refused to give me his records because, as he is deceased, I can’t be acting on his behalf in requesting his records. However, they now all of a sudden are acting on his behalf in redacting records for his personal privacy concerns?! The irony is like a slap in the face. This is, in my opinion, nothing short of them trying to cover themselves from any potential liability in his care and treatment. The Child and Youth Mental Health Services can simply refuse to release the documents. If there’s nothing to hide or be concerned about, why remove pages and alter sentences. There are actually sentences with words whited out, so they make no sense.

This speaks to the same mentality of the Psychiatrist who was in charge of Willie’s care at the Adolescent Psychiatric Unit in Surrey Memorial Hospital. When I presented them with Willie’s journals that showcased far different and disturbing symptoms than what he was admitting to they advised that they would only see them if he permitted –so as to not impinge on his privacy. The day before, Willie had directed me exactly where to look in his drawer to get him more clothes for his stay; specifically mentioning the drawer and that I should go right to the bottom of the drawer – which is of course where the journals were. He knew I would find them and I believe he wanted me to find them. That he wasn’t able to be honest through his mental illness but that his journals spoke what he couldn’t. Needless to say, Willie refused to let them be seen by the doctors and they were given back to me and I took them home. I had read them through and knew that Willie was far sicker than he was letting on. During his stay I was repeatedly told that I couldn’t reference the journals or what was in them; that his care would only be based on their conversations with us and him. The long and short of it is that his care was tailored to a moody teenager who wasn’t getting along with his Mother – not the pre-psychosis symptoms that were rampant in his journals and drawings.

Back to the documents I received… I look at them and see yet another example of the frustration that families navigating the mental health system have to face. The futility I feel is massive and I wonder if change can be enacted on any level. I have a number of friends and family who tell me to let it go and to just stop “tormenting” myself with this but I can’t. Nothing will help Willie anymore and that’s just the way it is. But there will always be another youth and more families that have to face the same struggle for care and answers.

FOI, Surprise

An interesting and surprising turn of events happened yesterday. I opened my mailbox to discover a letter from the offices of the Information Access Operations (essentially the Freedom of Information division). Now as some of you know, I have had less than stellar results at my attempts to access my sons records while he was under the care of the Child and Youth Mental Health Services.

After my recent request was denied and my file was permanently closed I did manage to speak with a representative both here in Victoria (by phone) and had an in-person meeting with a representative from the actual office where Willie had been treated (in Port Moody). The in-person meeting was ineffective and nothing came of it. I was again told that I would no be given access to records and that was the end of it basically. The phone call was slightly more promising as I was instructed that my best option was to submit a brand new request, citing a different reason for the request. She explained that if I just appealed the decision on the first it would result in the same denial.

So, I did that. I submitted a new request and this one was no holds barred. I stated my reason not as a nicely worded need for closure and to review etc but that I was concerned about a lack of adequate and appropriate care and wanted the records in order to review them for potential negligence in his care by the Ministry. I seriously figured this would get tossed faster than anything else..

I have had no response – none – not even the standard “thank you, we received your request and are reviewing” and I assumed that it had been shredded unceremoniously.

Imagine my shock to open the mail yesterday, expecting to find a letter stating that my request was denied and instead I find instructions on who to contact to arrange an appointment to go pick up my records package for my son’s records. So off I go today to see what closure this can bring.

Understanding

For what feels like a lifetime now I’ve been asking the question “why”. It changes though from “why did you do it?” To “why couldn’t we stop you or help you to not want to kill yourself?” Or sometimes “why didn’t I do something -anything- differently that may have affected the outcome of those months?” I sometimes ask Willie why he wasn’t more honest with the doctors about what was happening inside his head. Why he didn’t reach out sooner…and why he chose that day to end his life here. All questions that I’ll never get answers to.

My therapists tell me that I have to accept that I’ll never find those answers. That the truth I have to live with is that Willie took those answers with him – if he even knew the answers himself. He may not have. His mind wasn’t healthy; it wasn’t “sane” is the purest sense of that word. His mental illness clouded his perceptions, his understandings and his actions.

The more I struggle to grasp the acceptance that “why” won’t be answered the more I come to know that it all surrounds the base feeling I have that is, very simply, resistance. Not denial. I’m well aware and understand. But resistance to accepting that what has happened HAS happened is a hard step to take.

I know I have to accept it, and I have on some level. But I don’t want this reality.

And in that truth I come to understand Willie. He didn’t want his reality. He made his choice – driven as it was by mental illness. Yet I do believe that his choice was made by him, and not his illness. He didn’t want to live with the pain he had and the future he thought he had laid in front of him. His illness contributed to him not being able to see that he did have a possibility of a different future than the one he imagined.

So in a way, one of the “why”s is answered for me. Along with a slow acceptance that the other questions will remain elusive.

Just mental illness…

“just mental illness”… Those were the words I said a couple of days ago to someone who I was talking with about my son’s death. We were discussing families and such and the subject came up naturally and I shared that I had lost my son last year. Unlike most people who I tell, she actually asked how he died. I was a bit taken aback and found myself stammering. I still have a hard time saying the words and there’s no easy way to tell someone that he killed himself. It feels like I’m hit with a sledge hammer when those words come out of my mouth. So I told her and she expressed her sympathy; then she asked another question. She asked me if, like so many other kids she has heard about lately, was he bullied; was that why he killed himself.

I was more than a little stunned as no one ever asks “why”. That’s a question I ask myself every day and I’m finally beginning to understand that it’s not a question that has an answer that will ever satisfy me.

So I said no, that he wasn’t bullied… I mumbled and finally just answered “he was depressed,, we think it may have been the early stages of psychosis…it was just mental illness”

There is so much in the media and so much publicity right now about bullying and especially cyber bullying. It’s a horrendous situation and it needs awareness definitely. But we’re forgetting about the all too prevalent problem of depression, psychosis and a myriad of other disorders that afflict not only youth but all of us. Mental illnesses that are suffered and that kill. Let’s not forget that “just mental illness” may be quieter than the sensationalized and media stormed bullying issue but it is every bit as needing of attention and awareness.

raw

so hard, the struggle to try to over-power the feelings of futility

the strength it takes to smile and laugh when the tears are pressing

how deceptive the postings and pics that are made that show hope

the self-hatred as I fight with myself to not give up

battles inside of my mind and body, desires I despise

loathing myself for my inability to be truly what I portray to others

fake it till you make it simply amplifying my grief rather than lessening it

like a pressure cooker I sense it, building and growing

unsure how to live with the slamming of emotions that careen in my thoughts

my friends so happy at my outward display of getting “better”

them not knowing the depths that I fall to still when I’m alone

leaving me unable to reach out and destroy their happiness at my “accomplishment”

bringing me a deeper feeling of isolation and aloneness

my mask of insincere healing worn heavier now

do I pull back entirely as I can’t be what they want me to be – better

no one can stand who I really am right now, not even me

Different

I’ve been doing a lot of “glass half full” vs. “glass half empty” thinking on life lately. My attempt to balance out the depression and the feelings of hopelessness that accompany it. I have always been an optimistic person by nature; seeing the silver lining and the glass as half full. Consistently able to say to myself that things will get better, even in the midst of despair – or what I thought was despair at the time. Losing my son to suicide has left me with a sense of not being able to see out of how life feels right now. Forcing myself to come up with a “half full” outlook when I’m having a bad time or something crappy happens is my way of trying to get back to being myself and moving forward.

It’s been working on the little things and that’s either a testament to the anti-depressants finally working or to the simple fact that time and therapy will start to help the healing process… whichever it is, it feels good to be able to mostly see that there is a light at the end of the tunnel. My sense of humour is returning and sarcasm is once again bubbling to the surface (a key facet of my personality) which gives me hope. I still have times of tears and feelings of futility at the prospect of ever being “ok” again… there are still times when I struggle with self-harm and desires to just simply not have to be here anymore because the hurt is too much… but I make it through. Realizing that grief will always be with me, every moment of every day for the rest of my life – but that I can still experience happiness and joy with it there is a huge acceptance for me lately.

Spending the last few days visiting my boys has been hard, as it always is… the emptiness left by Willie’s death is very much obvious and palpable when I’m with the remaining 3 boys. Going to a restaurant and counting one less person who needs to be seated still hurts, and I think always will. Getting into the car and not having someone squished because now there’s one less to fit in brings that awareness. It’s the little things that mark such a huge void in our lives now.

Yet, being able to have a visit with laughter and fun and family time is moving forward. Yes, there were tears this weekend and times when the missing son was so painful that I could feel it physically but, and this is big, we still did smile and laugh and love each other. Life is going on. Not like it was but still going on.
At one point when we were talking this weekend I said how different our lives are now. My oldest son just nodded and said “yeah” and it was all that there was to say. So much entangled in that word “different”… so much that it’s too big to open up sometimes. So we just nod and acknowledge that it is different – and there’s nothing that will change it so we just have to move forward as it is now.

Both sides

Sitting in the living room listening to my oldest and my youngest play a video game together while the second oldest hums along with whatever he’s doing on his laptop… A “normal” evening but it feels anything but for me tonight. This visit has been a lot of ups and downs as always.

Watching my youngest son last night at Karate was a surprise crash. Not really sure how it was such a shock to me though… being back in a Karate Dojo and seeing Kata practiced brought back so many memories. Willie was so good at it and so proud of how well he did at gradings and tournaments. He had a knack for Kata; his movements precise and sharp, his mind so focused when he was performing them. He achieved his brown belt before he gave up Karate… that was really at the beginning of when he started to first show signs of mental illness. Signs that, at the time, we thought of as nothing more than adolescent behaviour. He stopped Karate; his worsening moods and conflict with his step-father (who was his Sensei at the time) a major reason for him giving that up. I remember him and I talking about his decision and I tried to get him to agree to go to a different Dojo but he was done with it entirely. His anger at his step-father was what he used as the reason for pulling out. He wanted nothing more to do with it.

Taking Willie’s younger brother to Karate last night… watching him practice with the same determination and focus… seeing how happy he was that he was doing well and that I was there to watch him… the memories and the tears came flooding forward. They caught me off guard and I wished more than anything that I could leave but I knew that my son would be upset, so I stayed… I smiled and nodded at him when he looked my way. My eyes full of tears and my heart breaking – seeing Willie in my mind’s eye as he was. Anger filling me as I screamed inside at how unfair this all is. Hating myself for how badly I just wanted to be out of there. Mad that my ability to enjoy this moment with this son is hindered and tainted by what’s been lost when Willie did what he did. Trying to push away the sadness and focus on my son who is still here and so excited to have me here to see him.
Karate ends and we pick up a few groceries and head back to his older brothers’ place where we’re staying while I visit. Tending to bedtime tasks and readying for school in the morning. The normalcy of the evening magnifying the emptiness I feel with three instead of four around me. The truth that one will always be missing weighing on me heavy this visit …

The flip side on my mind as I settle in to bed for the night. The day was filled with fun laughter and conversation with the oldest 2 as we hiked earlier that day. A sweaty and demanding hike with amazing views in the quietness of nature calming my mind. The sheer joy of realizing that not only are my two oldest responsible and mature but they are fascinating, articulate and interesting young men with great senses of humour and sarcastic wit that makes for an afternoon of out-loud laughter and camaraderie. The smiles on my face sincere and heart-felt as I look at them chatter with each other and know that I’m proud of how they have turned out. The peace of sitting with them waiting for the youngest to get out of school. Us reminiscing about days long past when they were at the same school as little boys. Happy talk and memories in the sunshine as we joke about how small the elementary school kids look. The secret thrill that I have when I see my youngest catch sight of us and run – passing me to grab onto his brothers instead first. Tears spring up suddenly as it floods me how good it feels to be with them all – but knowing that Willie isn’t here.

The truth is that both the joy and the grief exist in the same blink of a second; and they always will.

Similarities, “Dexter” and Depression

I recently started watching the series “Dexter”. I find lately that I can’t make it through a 2 hour movie with any focus so I have been watching tv series. Without the commercials I can usually make it through an episode without more than 3 or 4 pauses to pace or wander the house or scroll facebook for a mental break. Depression is great for messing with mental focus and attention span.
I am only a few episodes into the first season but I have noticed a disturbing yet not surprising connection between how I feel every day and how Dexter describes himself and his inner “feelings” I use that term in quotations because he accurately and succinctly describes his utter lack of feelings as what makes him the way he is. He is a sociopath and a serial killer. There are actually a lot of similarities…
Depression has made me into someone that I don’t recognize. I have character traits and behaviour patterns that aren’t “me”. I force myself to go and out very rarely actually want to socialize or be part of an event or get together. I make myself go and I make myself make plans with people because I should and because my therapists and my friends and common sense all tell me it’s good for me. I can’t just sit at home and isolate myself; that’s not healthy. So, I go out with friends and I attend parties and social events and I try my best to be “normal”. I smile when I’m supposed to, laugh at jokes when it’s appropriate, nod and “hmmmm” when it’s the right time in the conversation. All the while my conscious mind is calculating and analyzing and finding my “feelings” lacking. They just aren’t there. It’s like I am dead inside and there is nothing there where it all used to be. I look around and feel the enormity of detachment between myself and everyone else around me. I feel the loss of the connections that I used to feel and that I know I should… but it’s all cold now.
I know that by writing this I run the risk of a large number of my friends saying “fuck it” and walking away from me for good. I am quickly getting a reputation as someone who doesn’t follow through or who cancels plans last minute and I completely understand why. I keep trying to force myself to be “normal” and my ability to keep dates with friends is tenuous at best. When I do make it out, I find now that in groups I am quieter and less involved. My desires to engage in activity are almost non-existent so I hang back and just observe. I am constantly encouraged by people to just keep coming out, that my company and my energy is welcome and missed and that I am wanted but I feel like I am not adding anything of value to any get together, so why bother?
I find at times that I’m lonely. Yet I also don’t want company. I can’t face the energy it takes to even just be in the same room with someone. I have wonderful friends who I know want nothing of me other than for us to spend time together but the truth is that it take so much out of me to try to be even remotely “normal” that it’s exhausting…and I feel like I am a fake and that’s not fair to my friendships. I have few close connections with people and they are sporadic based on my ability to connect – which is not very consistent or reliable. For me to be truly “me” right now around someone is not well accepted most times. People want to make me happy or at least make me less sad … and while I appreciate that, it places huge pressure on me to BE less sad or to be happy around them so that they are validated that they did want they set out to do. I hate letting other people down and I hate making other people uncomfortable so when I know someone who I’m out for coffee with or a walk just wants to know that they have left me better than when they found me that day… I feel like I have to oblige. The option is, be honest, tell them that while I may have enjoyed our time together, that no, sorry, I’m not feeling better… I’m not able to see the light at the end of the tunnel now…that leads to me turning down future attempts to meet up or get together because I just can’t face the pressure of what they need from me.
Now this may sound like I never have an enjoyable time with friends or that I never have fun when I go out but that’s not true. I do…but it is rare and fleeting. I may have a blink of a moment of a sincere laugh at a joke or a 5 minute conversation that clicks and I connect with a friend and I feel good. I may have a walk at lunch with a new friend who doesn’t have that pressure aimed at me – who just is with me and me with her as we talk and walk and I DO feel better at the end of the walk… I do sometimes look forward to a coffee date or a movie … It does happen, but those moments are the exceptions. I keep hearing that eventually those exceptions will become more and the cold, detached times will become less and the balance will tip and I will “feel” again.
It’s hard to see that most days though. But I try… I try so hard to keep dates and go to get togethers and not feel worse after because of not feeling anything at all.
To my friends, those newer and those who have been with me longer… to each of you read this… Those of you who know me, really know me, know that I am not cold and detached and emotionless – I am far from that … I’m making my way back… I just need time and space to get there. Hugs.

Contrasts

You left this world so differently than you entered it

You arrived a week late, in a rush and with a suddenness that surprised us all

Your birth so fast and surrounded by so many who loved you before you were even here

Your first night I held you as you screamed with such force and life

I was shocked at how strong and determined you were right from the beginning

Your life and time with us marked with such extremes

Such strength and confidence twinned later with so much pain and confusion

Your leaving so long and yet so short, all at the same time

Days, weeks and months going by with each moment feeling like both an eternity and a blink

You left us by your choosing, quietly slipping away by your own decision

That moment you left so unlike the one you arrived

Your silently penned goodbyes leaving ripples louder than you ever imagined