You would think after living with someone with schizophrenia for seven years, I'd be good at recognizing what is reality and what is just an illusion.
But sometimes it's still hard for me...
There are a bunch of thoughts tumbling around in my brain that I'm going to try and make some sense of here. Have patience with me, I'm not sure how successful I'm going to be with this...
M had an appointment with his pdoc on Friday. She hasn't seen him in months, and this was his first appointment at her office at the new Children's Hospital.
I have to confess, after the appointment I felt like crap.
No, worse than crap... I felt like crawling into a hole somewhere and pulling a rock over myself.
I felt an overwhelming sense of heaviness... hopelessness... settle over me.
The feeling lasted all the way home, and for hours afterwards. It finally drifted away as I sat outside watching Blaze, Tilly and Tucker grazing out in the big pasture. As I watched them I realized that what I was seeing, feeling and hearing... the earth, the birds darting about, the dogs sniffing around through the long prairie grass, the steady chewing of the horse and donkeys, the swishing of their tails as the flies buzzed and bothered them... all that is real.
But the shiny new behavioral sciences building at Children's (TCH), the place we'd just returned home from, isn't...
It was with that realization that the heaviness lifted and I started to feel like myself again...
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I'm going to try and explain this, if I can, because it feels like these thoughts need to come out, but first I have a disclaimer. For the families of children with serious physical illness, TCH may be a lifesaver... it may be real to them, a place full of support and healing. Maybe it's even real to some families of kids with mental illness... I don't know. I can only write about my experiences with TCH, and this post will undoubtedly reflect the rather unique path we've followed in terms of M's treatment...
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In looking back I realize that the heaviness began settling over me even before the appointment, when I was just walking into the building, and it got worse as we waited for the pdoc. I could see her behind the locked doors of the day treatment unit, chatting with another parent, an acquaintance of mine, while the kids and I waited.
I have to admit, for those few minutes I felt jealous, and angry... For more than a few months, and through some really difficult med changes, I've waited for the pdoc to have a few spare moments to focus on M. Unfortunately, he seems to have dropped completely off her radar screen. So it was hard to watch her chatting (late for M's appointment), so leisurely with another parent.
At that same time I was feeling angry with myself too, because even though I've resisted putting M into day treatment, in a strange way I wanted to be part of that little group... But although I should have felt a connection to both women, because of the choices we have made in terms of M's treatment, I felt both literally and figuratively, locked out.
During the appointment I didn't say much to the pdoc, when she asked me questions I answered her, but that was it. Thankfully, M was talking more than enough to fill up the quiet spaces.
The appointment was a short one, but by the time we walked out to the car, I'd somehow picked up, along with my purse, and my keys, the full heaviness of hopelessness and isolation.
It was only later, when I realized that none of this...
... is real.
That it's an artificial world.
And I don't have to be a part of it, to do the right thing for M.
That this is my real life...
... that this safe, sheltering, comforting place is real, not artificial... it was only then that I began to feel better.
No, this isn't real.
Yes, it exists in brick and mortar, glass and concrete...
The building is impressive, expensive, and tastefully decorated.
But this beautiful building, and the promise of help and support it brings with it, is... much like our whole system of mental health care... just an illusion.
Is there any real and lasting help or support to be found there?
No, I don't think so... at least not for M. He has severe, treatment resistant, schizophrenia... he also has FASD... two disorders that are not generally amenable to treatment. And we've tried virtually all the medications available (only missing some of the older antipsychotics) to treat the sz, in varying combinations and strengths, some several times, so it's not like there is anything left to do in terms of meds.
From what I've seen, any support we might find there would be transient, and paid for by putting M into an environment that includes poorly fitting interventions, and plenty of negative influences.
But still... it's so seductive somehow... to imagine that someone in this bright and beautiful building could make things better, maybe even "fix" things.
And the awareness that they don't have the answers (and sometimes they don't even understand the questions), can be such a heavy burden.
But what helps lift that burden for me is the realization that Woodstone Prairie is real.
THIS is real...
...and yes, so is this.
And M IS learning, growing and thriving in a safe and protected, yet challenging environment. He's surrounded by people who love and respect him, and are committed to walking this walk with him for as long as humanly possible.
We are so blessed that we ARE able to do this... That we don't have to place our trust in systems that are full of promises and good intentions, but where real help and support is just an illusion.
Note: All TCH photos in this post are actual (probably staged) pictures of the new Behavioral Sciences Building, and all Woodstone photos are actual (totally unstaged) pictures of our home (and one of M's favorite restaurant)!