Thursday, July 28, 2011
When we got there, Saturday at noon, Tim came out with his face hanging down, cup of water in hand. My heart immediately sank. I'd seen that face before. But rather than be sullen and in a bad mood, Tim got in the car and proclaimed that his stomach hurt him, and the water was to try and settle it. Tom and I quizzed him about what he could have eaten - or not eaten - to give him stomach pains. And in the back of my head I registered slight panic, as this marked a solid month he'd been complaining about his stomach, and I feared if the Clozaril was the culprit, we might have to look at a med change.
We stopped at a Target before going to lunch, and I bought a thermometer to check his temperature, just to reassure myself that it wasn't the stomach flu. It wasn't. We bought some Pepcid AC and put that into him, and went to Applebee's. When we got there he ordered Sprite. That's it. He opened his present - and iPod Touch that he'd been saving for (as we told him he'd have to pay for part of it), all loaded with games, music and a movie. He smiled, but then turned to us and said, very maturely, that his stomach was still in pain and he felt that a movie wasn't a good idea. He wouldn't be able to enjoy it, and he thought that maybe he should rest and try a movie again some other time. We agreed, if he felt that way, that was best. We stopped once more on the way back to school for a 2-liter of Sprite and some Saltines, and dropped him back at his group home to recuperate. I was dissapointed we couldn't do more to celebrate his 17th birthday, but had to respect his decision.
I called that evening to see how he was feeling and his house manager told me he was out. At the movies. Seeing Captain America. Apparently he'd had some Saltines, Sprite, and a nap, and was better by about 4 PM. And I immediately felt cheated. I get to spend so little time with Tim as it is, I wanted his birthday to be special - something fun we could do together. And he got to do it, and I wasn't there. Part of me wondered if he didn't want to go to the movies with us. I managed to make it all about me in my mind for about an hour. Then I managed to make myself feel guilty about making it all about myself. It was a completely self-absorbed pity party, contained to the space between my ears. I hope. I don't think Tom noticed.
So, his birthday didn't go as I'd planned. Hell, what in his life HAS gone as I've planned? Precious little. We're planning a visit home for a few days in August, before school begins again, and a trip to Wisconsin for Labor Day weekend, so I'll have time to do some fun stuff with him before school is back in swing. I'm sure not taking these boys growing up very well, am I?
Wednesday, July 20, 2011
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.
Sunday, July 10, 2011
Someone once said, "
I was sitting in a restaurant with friends after day two of the NAMI Convention at the time, not the optimal venue to be in when learning that your son, thousands of miles away, has managed to do something to injure himself so severely that he's on crutches. I got that sick, prickly, nauseous feeling that starts up around my shoulders but sinks into my stomach as rapidly as if I'd swallowed it. And despite my best efforts to keep my composure in public, I started to sob. I checked my email, and a note from my cousin (who lives near where he's working) said she saw his status, took him to the hospital, and he has a deep hematoma in his thigh. My mind immediately raced to thinking he has deep vein thrombosis, or he was badly injured at work, or he had an accident all alone in his apartment. It was after 2 in the morning in Germany, but I was calling Tom to see if he could call Sandy to see what was going on, right then. One of my dinner companions, Cinda , said she was once told that persons (like me) who jump to a wildly extreme conclusion do so because they have a well-developed imagination. And I was imagining the worst. That he'd lose his internship. That he'd be permanently injured. Both.
Meanwhile, in other worries, Tim is spending 10 days alone with my parents on vacation in Wisconsin. He was SO excited to go, and my parents love him to death, and, after last year's 4 day experiment of him visiting them going well, we decided to give it a go. This is a different kind of worry. Tim has been doing incredibly well the past several months, but I'm still holding my breath at calling him stable. Tim's got a few quirks and rituals that, even if you know about them in advance, can be difficult to live with in the context of your day to day life, and my parents have their routine and the way they have come to expect things to be done, which could potentially cause Tim some anxiety. And, frankly, as I say to my mom sometimes, they aren't 65 anymore. If, God forbid, Tim's mood should turn or his psychosis kick in, I'm not super comfortable being a 5 hour drive away. So every day my dad has projects for them to do and my mom has plans for cooking and going to the farmer's market and riding go carts. We check in with each other by phone, and my mom sends me email updates and questions as they come up. That's the plan we set up in advance. But I still have some smoldering worry because, as much as they love each other, there's no way for me to interpret between them when I'm not there.
It turns out Sandy's accident was caused by a skateboarding snafu where he went down an incline too fast, landed face first, and the cell phone in his pocket dug in to his thigh. However, not only did his employer run over to care for him, but my cousin took him for x-rays and is now pampering him in her home as he recovers. And, Tim reports he's having a fabulous time with my parents and they are reporting that he's helpful and in good spirits. I have no control over Sandy anymore. He's an adult, he's a continent away, and he is going to live his life, the good and the bad. I do have - and did exert - some control over Tim's visit to my folks. We set up a plan to minimize stress and maximize fun for all three of them. I've done the best I can do, and I can't expect more of myself than that.
Wednesday, July 6, 2011
I'll be attending the NAMI 2011 Convention in Chicago the next few days. There are some really interesting sessions. I'll be tweeting during some of them - you can follow me @Chrisa_Hickey. I will also be blogging about the convention next week.
Are you attending? I'd love to meet you! Drop me an email or a tweet and let me know!