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.