I’m taking John to the Clinic this afternoon to be started on a new medication. Invega Sustenna.
It’s a shot he will get once a month to take over the handful of pills he’s been taking for months. Pills that clearly haven’t been working.
He’s not been doing well and decompensating for the last couple of weeks. When we went to the Psychiatrist last week, he decided on this new game plan. So we’ve been hanging on during this week waiting for this medication relief. They would have given it a week ago except he had to get “pre authorizied”. Bureaucracy.
It’s hard to not get discouraged. John was doing well, was stable, for 9 months on very little medication after he moved out here. Nine full months. He had a major breakdown in January/February this year which I believed and still believe was a reaction to an antibiotic he went on. He was hospitalized for a month. A very nice nurse at the hospital contacted me privately to share she believed I was absolutely correct in thinking it was the antibiotic that had negated the effects of his anti psychotic medication as she has the same issues with her autistic son.
But John has just not fully stabilized yet from that incident and we’re in June now. He went back to his day program where he continues, thank God as they also keep an eye on him. I just have a hard time imagining how he managed his life with such little support for years back in Illinois. He lost most of his mental health services and was basically just alone in his apartment, minimally functioning, for too long than I want to think about.
I hover over him like a helicopter. But yesterday I wasn’t feeling well myself. I’m trying to save my gallbladder with a 3 day fast. I’ve done it before so I know this works but those three days are not pleasant. And yesterday, sitting at home drinking apple juice resting with a heating pad on my abdomen, I got calls all day from the program and John’s case manager about how poorly he was doing. John stopped by my house, clearly acutely psychotic, hearing voices and distracted. For once, I wasn’t feeling well enough to pop up and take over. We talked awhile and he went home promising me he would eat dinner then come back and spend the night. Of course he didn’t do that but at least he called me early in the evening. His frequency of communication drops off the map when he’s like this. I’m left to manage trusting he is ok without me running over there to check on him constantly.
“He’s either fine or he’s dead” my friend JJ told me this past weekend when I was in Sedona and unable to reach him. She was passing along wise words someone once told her about her son when she was worried.
True words about how much control you actually have over another person’s life or well being.
Balancing my own life with this level of responsibility is something I will deal with the rest of my life. I err on the side of hypervigilance now but that just can’t last. I was never more aware of that than yesterday when I even said to him “sometimes I’m the one who’s not well John”. Which I immediately regretted as it’s not his fault. But it’s my reality.
I realize how much of my life is holding vigil over others’ well being and how so infrequently I’ve felt this myself. I’ve never been good at creating that kind of support. I think those of us who grow up without mothers learn very early on to just fend for ourselves and being cared for is something we desperately crave yet never feel entitled to somehow.
Even with all that, and I do admit this isn’t a sunshiney post today, with all this, I still hold faith. I still hold faith that John will get better. That he will stabilize. That he will stabilize for much longer than 9 months. That we have a life ahead of us not defined by voices, paranoia and religiosity.
I also still hold some kind of deep secret hope that I will get that kind of support I crave. That an intimate, loving, supportive, passionate, soul mate type relationship hasn’t escaped me. That I’m still in line for that life.
Unlike Sarah in Love Actually, I hold this flame alive within me. I don’t know how this will all happen or when or what will be needed to make it so but I’m still fanning that little burning ember inside me.
One thing I will take kicking and screaming through this life with me is my faith and hope in a life larger than the one that sometimes appears in front of my eyes at the moment. One more bright and alive than my tired eyes can see.
I deserve it. We deserve it. In fact, if anyone on this planet deserves it, it’s us.
And I do believe it’s coming, somehow, some way.
I want to write about faith,
about the way the moon rises
over cold snow, night after night,
faithful even as it fades from fullness,
slowly becoming that last curving and impossible
sliver of light before the final darkness.
But I have no faith myself
I refuse it even the smallest entry.
Let this then, my small poem,
like a new moon, slender and barely open,
be the first prayer that opens me to faith.
— David Whyte
For today, I put my hope and faith in Invega Sustenna that it will give John some relief today. I’ll bring him home with me this afternoon.
And we will both rest.