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.