Los Desaparecidos

I’ve been trying for the last two weeks to get up the gumption to rewrite a post I did on the 17th, which was both my birthday and Father’s Day, without success. I think once I’d written it, the catharsis of that thought was complete.

Suffice it to say that it’s not one of my favorite days any more.

I believe I know what happened: I did publish the post, and at least one person saw it, because she mentioned it. But I had the Compose window open on two computers, and must have made some change on the “other” machine, which was showing an unfinished draft, after posting. That overwrote the published version, and also put it back into Draft status. So the final version is now desaparecido. Ah well…into the ether, ne’er to be seen again!

Keep On Truckin'

Some friends are going through much the same experience with their 17-year-old son as we went through with Katie. Their situation isn’t identical, of course—as Tolstoy wrote, “Happy families are all alike; every unhappy family is unhappy in its own way”, and the same applies to individuals.

But the fundamental problems are the same: their bright, happy, smart child goes through periods of dysphoria and rage, culminating recently in a suicide attempt. Fortunately, they found him in time and he’s OK for now, but nothing is resolved. Indeed, it rarely is in these situations, until and unless either a set of medications seems to stabilize the situation, or the individual just “grows out” of it.

The former isn’t a sure thing even when it seems to work, because the efficacy of meds can change without warning. But for some people a particular regimen can work for long periods, sometimes even permanently. (And by the way, television writers, please learn that medication isn’t magic—I almost threw something at the screen last year when a character’s problem was diagnosed as bipolar: “Now we’ll get you on medication, and you’ll be fine!” A tad bit facile.)

“Growing out” of the problem shouldn’t be taken to mean the child is doing anything deliberate, i.e., acting out to get attention. Instead, it reflects that fact that just as these disorders often start at puberty or around age 18 (as various major stages of physical brain development occur), they can also vanish, or at least lessen, as further physical maturation transpires.

When IMing with my friend today, I was finally able to articulate something that had been percolating in the back of my mind for some time: that mental health issues are in some ways far worse than physical health issues for the victim’s family.

If your kid has cancer, I wouldn’t expect you to feel any qualms about telling friends and neighbors. They’ll rally ’round and help support you to whatever extent they can.

If your child is bipolar or has severe anxiety or any other sort of mental illness, you’re likely to feel much more chary about discussing it. Not because you think you’ve done anything wrong, hopefully (although of course there’s always some latent guilt lurking in the back of your mind, even if you know intellectually that you aren’t responsible), but because you don’t know how others will react.

As I’ve written previously, Katie was blessed with a great number of friends, but she (and we) were also blessed with the friendship of a great number of other parents, many of whom “got it” without any discussion or weirdness. They welcomed her into their homes despite her “problem”, offered us support, and did all of the things that good friends do when someone they know needs help.

But this isn’t always the case. Some people just don’t get it, and that’s sad for everyone involved. A few of Katie’s supposed friends dropped her like a hot potato as soon as word got out that she was ill. I don’t feel hostility toward these kids: their experiences and/or attitudes are what they are, and they didn’t act as they did to be mean. We are all damaged people in one way or another.

All-too-common modern “helicopter parenting” confuses things, too: the parents of a child who has real problems and needs real monitoring may just appear overprotective to other parents, or—perhaps worse—no different from their actually overprotective peers. Either case makes real threats become harder to detect.

History hasn’t helped here, either. We used to put people in “nuthouses”, and even have words like “bedlam” that are derived from that practice, and “You must be crazy”, “My boss is nuts”, etc. are part of the language. There’s still a stigma associated with mental illness, and the insurance industry tried hard to preserve that: until the Mental Health Parity and Addiction Equity Act was signed in 2008, U.S. group health insurance plans were allowed to treat mental illnesses differently. Typically this meant some small number of psychiatric visits were covered per year; after that, well, sorry, you had to pay yourself—or forego treatment.

As Dennis Miller would say, “I don’t want to get off on a rant here”, but the injustice of those limitations and the fact that it took so long to rectify it is pretty sad. I know people who have all but bankrupted themselves trying to pay for mental health care for their child despite having “good” health insurance. And don’t get me started on folks who have to deal with not having any health insurance. But I digress.

Having a child with a chronic physical illness—celiac disease, diabetes, myasthenia gravis—is of course terribly hard on the rest of the family. Parents can focus too much on the sick child, to the detriment of the rest of the family; or try to treat everyone equally, usually to their own detriment—there are only so many hours in the day! But the one thing everyone in such a situation can usually agree on is the enemy: the illness.

With mental illness, the sick person can become the enemy, both to themselves and to the family. Rage and threats and physical violence are usually directed at the rest of the household, and can occur at random. If, as is often the case, the afflicted child doesn’t even admit to having an illness, things are that much more difficult: the parents are clearly the bad guys, since if the kid isn’t sick, what’s all the fuss about? This positive feedback loop just makes things worse. Non-compliance (the medical term for “not taking your meds”) is common and further muddies the waters.

The parents are often left with a dilemma: do we try to enforce restrictions (curfew/driving/etc.) that are clearly aimed at trying to protect the child from himself, knowing that doing so makes us even more the perceived root of all evil? Or relax the restrictions, lowering stress for all involved? It’s a tightrope dance that has no right answer (to mangle a metaphor).

It’s axiomatic in the mental health business that someone who is determined to kill themselves is likely to find a way to do so. What makes cyclic disorders (depression, anxiety, the entire bipolar spectrum) even more difficult is the fact that you never know from day to day what to expect. Of course there are physical illnesses like that, but with those, if things get really bad, you typically wind up at a hospital. If your child is raging and threatening, your choices are to try to deal with it, or call the police. And the latter can obviously get real ugly real quick.

One final factor that makes things harder: once the child turns 18, (s)he’s legally an adult, and you lose a lot of parental rights. For example, even if (s)he’s on your insurance, you don’t have the right to know anything about diagnosis or treatment unless the child consents. Which, of course, may not happen, since “it’s all your fault” anyway.

Again, the choices are lousy: deal with it, make ugly bargains (“If you don’t sign this paper saying we have access to your medical information, you can’t live at home”), or get the child declared incompetent. The last of these is not only time-consuming, expensive, and likely devastating to the relationship, but isn’t even a sure thing: just because someone has attempted suicide several times does not make them incompetent in the eyes of the law, especially if they’re able to make a good representation to the court (“Yes, but that’s all past me now: my meds are working and I’m fine, honest!”).

With modern communications (texting, Twitter, IM, et al.), a child who is suicidal will often say something to his or her friends (this has always been true, but it’s more real-time now). But their friends are, after all, not full adults, and are torn between worrying about their friend and wanting to be loyal. There’s no good answer to this one either: the friend who “rats out” the kid who wasn’t serious, or who had passed the crisis point without taking action, may lose a friendship; yet of course Katie’s friends who saw her the night she killed herself are wracked by guilt over what they think they might have done differently.

As my friend wrote, “The whole situation is crappy”. Indeed, it defines the term. So what’s a parent to do?

You brought this beautiful child into the world, and have spent most of your adult life trying to help them achieve and grow. You’ve told them “You can be whatever you want to be”. And now you’re finding out that nature has conspired against you, and the fact is that instead of looking ahead to them being independent and discovering a career and finding love and maybe having their own kids, you’re instead simply hoping to get through the next month, week, day, hour without a crisis, without losing this battle that you didn’t even know you were fighting until you were hip-deep in shattered visions of how you thought things would be.

Remind the child constantly that you’re there, that you love them, that you will do whatever you can to help them. If there are people outside the house (an aunt/uncle, perhaps) whom the child trusts, encourage them to reach out to the kid with unconditional offers of help, including promising to keep secrets from you (whether that promise actually applies is something they may have to decide on the fly).

You know your child better than anyone, so trust your gut: if your medical/psych professionals aren’t working, find new ones. Most folks out there with psych degrees are caring, hard-working professionals, but that doesn’t mean they’ll be right for every kid. Talk to the school guidance counselors—they’ve seen a lot more of these situations than you have, which doesn’t mean they’ll have any magic answers, but they’ll at least have some ideas and can suggest more resources.

Reach out to others. NAMI (www.nami.org and www.namivirginia.org) and other groups offer support meetings of various types, including many for parents and relatives of folks suffering from mental illness. When you talk to other people, you’ll be surprised at the number who have been touched in some way by similar problems. Of course, they likely don’t talk about it much, because we still have this societal stigma attached. But that’s slowly changing.

All you can do in the end is keep on keepin’ on, doing your best, and adjusting as the waves threaten to swamp the boat. And know that you are not alone.

Kt the Iconoclast

A friend posted a picture of her new running shoes on Facebook:

Katie would have loved these (while the rest of us screamed, "My eyes! My eyes!"). Her kind of colors.

I've been "stuck" listening to Saga again lately—can't seem to tolerate anything else. They're playing a rare U.S. gig in Manhattan at B.B. King's club on September 5, and I'm booked to go see them. Sure wish my concert buddy could go with me like she used to. It's not even an over-21 show...

Saga track of the day: "I Walk With You" (the YouTube clip is mistitled)

A Day Late and a Dollar Short, as Usual

Yesterday marked 18 months, and I found myself ("uncharacteristically", Katie would no doubt note!) short of things to say.

Many folks sent/posted sentiments, including my oldest sister, who emailed:

I'm not uncognizant of the significance of today's day. One point five years -- how the hell'd this happen...

...which pretty well nails my feelings about it: How the hell did this happen?!

Anita's Facebook post was also trenchant:

Today is the 18th month anniversary of Katie's death. I am still so devastated, and I wonder if that feeling will ever go away. I miss her so much. She was the light and joy of our lives, and the world is a much darker place without her in it. Please take a minute to think of our beautiful daughter today and the incredible joy she brought to so many people.

Meanwhile, the Oakton High School Theatre Department is holding a special performance of The 39 Steps tomorrow evening (Saturday, May 12th). Part of this event is a fundraiser for a scholarship they are creating in Kt's honor:

Just like KT, this scholarship is different than any other. We are not looking at just your school work or your activities. Rather, like KT saw everyone, we are viewing you as a whole person, with all sorts of quirks and personality.

We are again humbled to have been her parents and to have had this amazing person in our lives for almost 19 years.

Long Strange Trip It's Been

Spent the last two weeks recovering (somewhat) from spinal surgery to correct two herniated discs. I think I damaged these in 2007 when we took Katie to New York for her 16th birthday. We took the train, and there's one closet on each car for luggage, so you wind up stacking your bags on top of everyone else's. I was humping one of our suitcases up onto the pile and felt something let go in (I thought) my shoulder.

I didn't think too much of it, though I did notice over the next few years that occasionally that shoulder would ache something fierce. I thought maybe I had a minor rotator cuff tear, and even discussed it with a co-worker out in California who had just had rotator cuff surgery (aka "Tommy John surgery"), and it seemed to fit the symptoms.

Then one day last October I woke up in agony: the shoulder felt like it was on fire. I got in to see a shoulder specialist a few days later, and he immediately said, "It isn't your shoulder, it's your back/neck, see the neck guy. And meanwhile, have an MRI done." (Note to Canadians: I'm a big fan of the Canadian healthcare system, but this is one of those cases where I was definitely better off being here in the US with good insurance!)

The MRI showed that, indeed, two discs were herniated. They sent me to a pain management specialist, who injected cortisone into my back, using a fluoroscope (live X-ray) to position the needle, and within a few days the pain had started to ebb. In fact, it was during that time that I suddenly recognized the pain as the shoulder pain I'd had off and on since 2007—just much, much worse!

Anyway, after two of those cortisone shots, the pain was under control, but my right arm and hand were still partly numb, so the doctor recommended surgery. And that's what they did on the 11th. It's an interesting surgery if you're not the one having it: they go in through the front of your neck, moving your trachea and so forth out of the way; remove the discs; and then attach the affected vertebrae together using a titanium frame, plus some new-fangled artificial stuff that replaces bone (I call it "Silly Putty", but apparently it's somewhat more structural than that).

So for the last two weeks, I've been surviving on Percocet and muscle relaxants ("Livin' on reds, vitamin E and cocaine..."). Anita has been taking care of me, of course, and I'm healing nicely.

While I was in the hospital, I had a nurse the first night named Katie. She came by with my medications at some point in the wee hours and re-introduced herself (presumably having had many post-operative patients completely fail to remember anything from earlier!), and said "Don't forget my name, now!"

In my somewhat drugged state, I told her why I was unlikely to forget her name. Since it was the middle of the night with nothing happening, she sat down and told me that she'd lost a brother to suicide over seven years ago, and had a sister who had institutionalized herself. I don't remember much else about the conversation, but it was yet another reminder of how many, many people depression has affected.

I've had more Kt dreams than usual while on meds, and am thinking about her an awful lot as this strange spring proceeds!

Muttations, Tracker Jackers, and Mockingjays, Oh My!

The Hunger Games comes out at the end of this week. If you haven't read it, try to do so before seeing the movie—while the film looks to be quite true to the book, it surely can't capture all the depth of the original.

I plan to see the movie (obviously) but will do so through a significant cloud. It's exactly the kind of story Katie would have loved, I think, and I sure wish I could see it with her.

I dreamed about her last night. In the dream, I woke up around 3AM and looked out the window (which was in her bedroom, which is wrong, since I wouldn't be sleeping there) and she was trying to get in the front door. I went down and let her in, and then we lost power. And none of it made any sense, then or now.

Back from Canada

I was up in Waterloo, Ontario, where I grew up (ages 8-25) this week. It was nominally a business trip—I had a two-hour meeting with a prospect—but of course I took advantage of it to see my sister in Toronto and my mother and several friends in Waterloo.

As usually happens when I go somewhere that we used to visit with Katie, I was flooded with memories, overlaid with the nostalgia that goes with being older and visiting somewhere that you spent a lot of time when you were young.

In talking with one dear friend, she told me that when her oldest two boys were little, they got two cats from the Humane Society. The boys wanted to call them Batman and Robin, but she said "They already have names" and so they kept those. "Why did I do that?" she asked. "Why was I so rigid about it? I should have just let them call them what they wanted!"

I thought of this when I passed a place on Highway 6 that has several life-sized fiberglass dinosaurs in front, for some reason (OK, this is the web era, and the reason is here). When Katie was little, she of course always wanted to stop to see them, and now I'm similarly wondering why we never did (although perhaps it would have just been a disappointment, as such things so often are).

My friend went on, in talking about Katie, to say something that I quite like: "You'll never get over this, but eventually you may get used to it". I think that's pretty good: humans are amazingly adaptable creatures, and folks learn to live with daily problems ranging from irritating co-workers to chronic pain, physical handicaps, and even terminal disease.

That's not an imperative: there's no "should" here. Some people don't learn to live with whatever troubles them, and that's just the way it is. That doesn't make them "dumb" or "weak" or anything else bad, it just means that they weren't built that way, just as some people can't learn to read music (me, for instance!). Katie didn't manage to "get used to" her disease, and everyone knows how strong and smart and adaptable she was.

And of course there's no timetable, either. I've heard of people saying that "It's been long enough, so-and-so needs to get back to normal". That's just ignorant in the extreme. One actually hopes such people either never suffer a loss, or that when they do, they realize how wrong they were, rather than beating themselves up about not following some imaginary schedule for "getting over it".


It's been 14 months today. Maybe at 140 months, or 280, or some other number, I'll get used to this.