I’m not quite sure who “they” are, but there are things they certainly never told me, and there are certainly things they never told Stew, who lived with severe mental illness until he stopped living. Since some of these things were not related to us beforehand, we had to learn along the way. On the job training, I suppose you’d call it. I learn best when doing, anyway, I don’t read manuals, and I’m not known for my ability to stick to a script.

This morning I posted a few more entries to Stew’s site, http://www.stewyoungmemorial.com/, and going back and rereading things we wrote years ago reminds me of so much that he went through. It also reminds me of how much we had to find out on our own, such as how much help is available for those who are mentally ill but not yet destitute and living on the streets. From our experience, it’s none. Agencies told us to return when Stew was living on the streets, and not in his own apartment. Organizations told us they couldn’t help because he wasn’t on their pre-approved list of People With Schizophrenia. His psychiatrist fired him because we couldn’t afford more frequent visits. Her termination letter stated, “You need more consistent follow-up.” With no insurance and scarce resources no one explained how that was supposed to happen. When he needed a new scrip and we still hadn’t found a doctor willing to work cheap, I called her, the psychiatrist who’d fired him, and I insisted she give him another scrip.

Fortunately his therapist kept working with him, even when he couldn’t pay, and eventually Stew was able to pay him what he owed him, after social security had denied him several times and it had finally gone to court, to a judge who said, “I don’t even know why this is a question,” and he received the money he should have had years ago.

But besides those things, we also learned that it’s okay to play. It’s okay to make jokes and laugh and go on great adventures, even if the great adventures are nothing more than walking through a store and putting items where we think they should go, and not where we found them. There’s a certain amount of stealthiness needed for this kind of activity. It’s okay to go to the grocery store and play Secret Spy. It’s okay to spring for a dessert even when there’s no money in the budget for food, much less dessert. We learned to take advantage of every good day, even if that meant sitting in my living room and watching tv and feeling safe because we wouldn’t be evicted this one day, or even this one week.

It’s good to catch fleeting moments of serenity and enjoy them when possible, because we never know how long they’ll last, and while we can be fairly certain they’ll come back again, we can’t know for sure, so it’s best to enjoy them while it’s possible.

They don’t tell you that the caretaker has to, first of all, take care of the caretaker. They don’t tell you this because no one’s thinking of the caretaker, especially if she appears to be doing just fine. All conversation centers on the other, the one who’s being taken care of, and if the caretaker wants someone to take care of her, she’s going to have to do it herself. That one was the hardest lesson for me. I began to think my life was not my life, it was just a supporting role in Stew’s life. Due to his condition, he was likely to think that way too, at times, inadvertently, but at times everyone was playing a supporting role in his story.

And if they do tell you that, they don’t tell you how. It’s a nice idea, but without substance and with limited time, it’s meaningless. How do we do it? But that’s a subject for another time.

Most importantly, it’s okay to laugh at the illness. Every joke you can make at its expense weakens it just a bit, just enough to give you space to breathe. It can be hard, and I’m certainly not saying you should laugh at mental illness. I am saying, for the mentally ill and their caretakers, it’s okay to make all the mental illness jokes you want. Maybe you can’t. Maybe you think it’s disrespectful. Maybe it just hurts too much. But if you can, go ahead. Don’t let the illness take away your humor and your enjoyment of life, even if it’s just a piece you can barely grab on to now and then. Take what you can, because life is too short.

They don’t tell us that, but maybe they should.