You can also read this post on the CABF website.
I spent part of last week at the NAMI Conference in Chicago. It was a phenomenal three days where I learned a great deal, met some amazing people, and enjoyed playing tourist in my hometown. On the opening day after the keynote speech, I was having dinner with several BringChange2Mind folks including Jessie Close and her son, Calen Pick. Jessie and Calen had given moving and thought-provoking speeches earlier in the day and we were lounging at a local pizza joint, recapping their talk, and discussing our families and the convention. I don’t remember exactly why, but the talk turned to meds and side effects and I mentioned that Tim was on 600 mg of Clozaril a day. Jessie’s eyes about popped out of her head. She said her son – diagnosed at 15 and now a man of nearly 30 – had never been on a dose above 375. The conversation moved on and as our evening ended and I got on the train for the long, slow ride back home, I started thinking. Why IS Tim on that much Clozaril? Does he really need to be? Are we over medicating him? He’s been doing great for a while now; maybe we can dial back his meds a bit? Maybe he doesn’t need the Clozaril at all – maybe we can get away with a medication without so many warnings and side effects? I chewed on the idea all night, rolling it over in my thoughts as I tossed and turned in bed. Clozaril scares the ever-loving bejeezus out of me anyway. So if there’s a possibility we can get him off of it, why wouldn’t I? What kind of mother am I to keep my child on so much, well, poison? There’s been article after article in the news the past few weeks about how doctors are overprescribing psychiatric medication because they’re in bed with Big Pharma. Have I been duped?
The next day, I attended a session on transitioning children to life beyond high school, presented by Linea and Cinda Johnson. Linea was diagnosed with Bipolar Disorder after a particularly difficult time in college where she had periods of extreme mania and deep, dark depression she wanted to end by taking her life. Cinda, her mother and fellow CABF blogger, talked of feeling helpless and, at times, hopeless, as she struggled to keep her daughter alive, forget about in college. They each read passages from the journals they’d kept during this time period, passages that were as raw and shocking as they were moving and poetic. After talk about the past, they talked about the future, and how Linea, now in her mid-20’s, is learning to self-advocate and how Cinda is learning to let her be responsible for her treatment. It hasn’t all been easy. Linea shared that she had a particularly symptomatic Winter. Cinda told of how she waited for Linea to ask for help, providing gentle reminders that she was there for support. I was immersed in the alternately frightening and hopeful stories so deeply I almost missed the most important thing Linea said: she needs her meds. She will always need them. Yes, she’s tried different meds, and yes, she works to minimize side effects and deals with the ones that remain, but meds are a necessary part of her treatment regimen.
I thought about Cinda and Linea’s words later, and I compared them to my memories of what Tim has said about his meds. He hates how tired the Clozaril makes him feel, so he asked his doctor if he could take the bulk of his dosage at night so he isn’t tired all day. He told his doctor that his anxiety med was only taking the edge off his anxiety, and then told her again when a doubled dose destabilized his mood and needed to go back down. Tim is learning to self-advocate, and he knows what his meds do for his symptoms. And, when I really think about it, when he was on 400 mg of Clozaril, he said the voices were still unbearable. He knew his med level wasn’t right or, more accurately, wasn’t right for him. What might have been too large a dose for Calen turns out to be just right for Tim. I have to remember two things. One, at 17, Tim is reaching a level of stability and maturity that has allowed him to internalize his diagnosis, pay attention to his symptoms, and advocate for himself. And two, meds are a permanent part of Tim’s treatment plan. He knows this – he reminds me if 4 PM rolls by and he hasn’t had his mid-day dosage – and I have to internalize it as he has. He knows what’s best for him, and I have to take a page from Cinda’s journal, and let him make his own decisions while I remind him I’m here if he needs me.