This is not what I’d wanted to write on the occasion of Stew’s birthday, but circumstances seem to have a mind of their own. Today, January 10^th, Stew Young would have been 40 years old, if he hadn’t died of cancer 3 years ago. It’s hard to imagine Stew at 40. It was hard to imagine him at 37, since he’d gone backward in time a bit and was just getting ready to return to a semi-normal life and adulthood when the cancer struck.

Prior to the cancer thing, Stew was severely mentally ill. By that I mean he was more than depressed, more than anxious, he was occasionally a full blown psychotic. Not too often, fortunately. It’s not the sort of thing one wants to repeat if one doesn’t have to. Over the years he fought his illness he was diagnosed as paranoid schizophrenic, schizo-affective, borderline, bipolar, depressed (and who wouldn’t be, with all that going on?) and with major anxiety. Again, see the depression comment.

Throughout the day I’ve seen comments on various websites regarding the Arizona shootings. I’ve seen people comment that the shooter should have been receiving help, that his parents should have done something, that perhaps something should be done about crazies before something else like this happens.

Really? This is an original thought?

As if we hadn’t considered that before.

Let me tell you what happened with us. I was married to Stew when he started becoming mentally ill. It was a slow descent, and we kept thinking that he was getting better, or would get better, and when necessary, when he was suicidal, which he was several times before the Great Psychotic Break that led to years of uncertainty and pain, he would even take himself to the hospital. He was good about that, about seeking help. At the time he had a job, and health insurance. He worked for a large health insurance company, so insurance was a given. But what could they do for him at the emergency room? Talk to him, make him promise not to hurt himself, and then send him home again, that’s what.

So we’d go home again and hope things would get better.

When the Great Psychotic Break came it brought with it blood, all his, and I took him to the ER. They signed him up for daily outpatient treatment, and he couldn’t return to work for weeks. When I went to tell his boss what was going on he stood there and listened, and then visibly stepped back from me, as if I were carrying the contamination of mental illness with me and might infect him. He then began walking away, backwards, waving feebly as if shooing me and mental illness away.

Despite having been a valued employee and a likeable guy, Stew’s co-workers ignored him during this time. Perhaps they thought it was one of those where the less said the better, but Stew would have greatly appreciated knowing anyone cared. After having contributed to cards when others were sick and helping others out when they needed it and being ignored during his crisis, he felt more isolated than ever.

This is how it starts, the isolation. Let’s ignore the mentally ill guy and no one will catch it.

He returned to work and everyone pretended nothing had happened. But it had. Anyway, he didn’t get better. He’d get far worse before he’d get better.

Stew lost his job because he couldn’t work. He had six months of disability, and during that time we had insurance through Cobra. He had a psychiatrist, a therapist, and many meds. Some made him sleepy, some made him angry, mostly they made him dull and foggy, and he became a ghost of himself. He saw things that weren’t there. He heard voices that weren’t there. He struggled with knowing what was real and what was not, and with his parents two states away and me the only family we attempted to make him better.

The diagnoses changed, he didn’t fit into a category. And then the disability and the health insurance ran out.

So then what? We struggled through. His meds cost several hundred dollars a month. His psychiatrist eventually fired him because we couldn’t afford her. His therapist hung in there and kept treating him even when we could only make token payments. I was working, but I spent at least several hours every day making sure he was safe and not suffering too much, so my income was spotty and I was always tired. His parents sent money. We went various places to see if he could get help. By then he was living in his own apartment. At one agency we were told there was nothing they could do because he still had a roof over his head. “Come back when you’re on the streets,” they told him, “And then we can get you on the list.”

Oh good. I left messages with no return calls. I insisted his psychiatrist, who had fired him, provide a scrip so he could keep getting his anti-psychotics. She provided it grudgingly. I monitored his medications. I kept track of him. And both of us lived in a state of isolation. He ran errands for me and when I became overwhelmed he’d talk me out of it, or try to. Sometimes we both collapsed under the weight of our isolation and desperation. I sold anything I had that had any value.

And one day he went to a political rally with a knife, not sure why, but knowing he was angry and that a candidate had to be stopped. Who knows why these things happen. His rages were legendary, though he never ever hurt anyone. The political rally was a bust because he couldn’t find a parking space. Sometimes no parking is a good thing, no? When he came back to my apartment and told me I was straight with him. “If you ever do anything like that again, or give any indication you might, I will have to call 911 on you.”

And I would have. There was also the incident with the car dealer when his rage almost got the better of him, but I dealt with it.

Our mental health system is in bad shape. It’s not always easy to get help. Easy? Sometimes it’s impossible. Sometimes family members can do everything they can and it’s still not enough. Sometimes the mentally ill try everything they can and still can’t get the help they need.

But on the occasion of Stew’s birthday, this is what I have to tell you, and this is what he wanted you to know. Dealing with mental illness is really hard. If you haven’t had voices in your head telling you to cut your own throat you may not understand how very difficult it is, how very isolating, how it can be so very hard to tell the difference between reality and what’s only in your own head.

When Stew was dying of cancer he was more at peace than I’d seen him for years. He wanted to live, and he’d begun recovering from his demons. But once he was told he was terminal he realized that this was one way to ensure he’d be free of the demons forever. Death could not compete with mental illness. For him, it was a release.

I am so sorry that people died and were injured in Arizona. I’m so sorry we pretend mental illness always happens to someone else and we shouldn’t be concerned. I’m sorry about so much.  I’m sorry that today Stew isn’t here to celebrate his birthday with us, but we’ll celebrate anyway, because he would have wanted us to. And I will keep telling his story, like I promised I would.