I need to start with a confession, something I don't often speak of aloud — both because I think people will not understand (historically, when I have tried to speak of it, they haven't), and because I don't think I am anywhere near the official voice for this subject. And that subject would be mental health: my own, and my child's.
I have what I would term a mild case of obsessive compulsive disorder. I grew up knowing the way I thought was different from the way other people thought. I knew, for instance, that most people probably didn't think about how a particular part of their foot had contacted a crack in the sidewalk and would then make sure the same part of the other foot contacted the next crack. And then continued with a different part of the first foot, then that same part in the second foot. And then reversed the whole order, starting with the second foot first and doing the pattern, just to even it all up. And, if the "wrong" part of the foot contacted the crack, it had to be repeated, but now with that part incorporated into the pattern. And, for good measure, it was best to do it all again, starting with the second foot this time. Then there were all the fears of hurting other people, hurting myself. The way I'd make myself carsick reading and rereading signs we passed in a precise way. The need for certain things to be in perfect order while the rest of my belongings were in chaos. The overwhelming guilt I felt when it was time to part with an object I no longer needed. I knew all that was, well, crazy, but I never told anyone about it because — well, it was crazy.
It wasn't until college that I found out what I had had a name, and that I wasn't actually as bad off as I'd feared. It was both a relief and a stigma — someone else has this same problem, but, yes, it is bizarre enough to end up in my roommate's abnormal psych textbook. When a serious and long-term boyfriend then split up with me, citing as his reason that I was too much work for him, I figured this was somehow the root cause: that I was a freak who couldn't, apparently, sustain long-term relationships.
Slowly, though, it began to dawn on me. It started with really listening to the stories my parents told about my childhood: how I'd had to have the blankets just so under my chin, both hands holding an equidistance apart, and that they'd try to memorize exactly how it went but it was no use — I had to feel that it was right. They also used to laugh as they recounted how I would never sit in a sandbox but would squat awkwardly and would dust my hands off every couple seconds. They reminded me how I insisted on arranging my books in alphabetical order, but that I'd needed help since I couldn't yet do it on my own.
It moved on to really observing my own mother in action, and listening to her laughing comments about herself. She would point out in a singsongy joking voice that she had to have precisely six crackers for lunch, and they had to be arranged in a certain shape, and she had to eat them in a certain order.
And I realized: Not only did my parents know there was something "wrong" with me, they knew because my mom was the same way! There was no need for me to have suffered in silence all those years as a child. In fact, there was no need for me to have suffered at all.
I look at Mikko now. He has very specific notions of order. Beyond that, he has sensory issues with anything wet, dirty, or what he perceives as wet or dirty. His face can be happily covered in ice cream, but if one imaginary fleck of water gets on the cuff of his sleeve, he has to change his shirt immediately. He's always the one at preschool who hangs back from the messy activities. When I go to pick him up, I see the other children absolutely covered in paint or other goop, and my child is the one who is relatively untouched.
I don't know how he senses the world, not yet, but I catch glimpses that remind me, strongly, of myself, and of my mother.
Here is somewhat humorous video proof:
There are two segments to the video, and both were taken last year, when Mikko was 2.
So far, Mikko doesn't strike me as any "worse" off than my mother or I am. But it does make me wonder what's going on in his brain, what he will try to process as he grows — and what he will feel ashamed and confused enough to hide.
Here's where I break in and admit I have no idea where to shoehorn in some thoughts I've had since February, when starting this post. Possibly they belong in a footnote, but it would be a monster of a footnote, so I'll just stick them here, where we can all trip over them.
I share my story of self-diagnosis of OCD not to garner sympathy or to suggest that I know in a meaningful way what it is to struggle with other mental illnesses. I don't. I don't even know what it is to struggle with a severe form of OCD. I have been able to control it myself in a way that's acceptable to me, without therapy or drugs, but I don't condemn anyone who seeks other routes and outside help, and I would steer Mikko in that direction if I sensed it would be helpful.
I also don't share my story to have people second-guess me or give what they think is a reassuring response of "Well, aren't we all a little obsessive-compulsive?" Because, no, I don't think we are all obsessive-compulsive to the degree that I am. I truly believe my brain is ordered differently from others', and I could convince you of it if you wanted to sit around and let me list out the hundreds of ways I work through obsessions and compulsions in a typical day, but I don't want to get sidetracked here. (Obviously, if you do have OCD, you're free to share; I just get tired of the implication that, just because other people can't see my illness, since I hide it so well, that it's not there.)
I think, too, that OCD has been glamorized (for want of a better word) by shows like Monk and movies like As Good As It Gets, to the point that people now see OCD only as an extreme form of fastidiousness, and maybe something of a personality disorder. But, seriously, and, again, I won't go into this all here, there is a lot more funkiness to it than that.
Sorry for the detour, and back to my point, which is to ruminate on this question: What's a parent's responsibility when she sees a hereditary illness in her child?
I think of those years growing up, feeling alone and crazy and other, and I think the very first thing (and last thing and middle thing) I want to do is to talk about it with Mikko.
I want to ask him, when I see him precisely ordering something or repeating a pattern, how it feels when he does it, and how it feels when he doesn't.
I want to ask him what his fears are, what his thoughts are about his own mental health, what he wishes he could change, and what he's happy with.
If it turns out he has the same illness as I do, I want to share my own story. And I want that story to give him hope, as my own resolve gave me confidence to change my behaviors. It was in junior high that I first realized I had control over my thoughts: that I could stop some of the little voices that pestered me by simply, and graciously, refusing to let them get at me. It was more liberating than I can describe, that first act of mastery over my own mind.
It was many years later that I realized I could apply that mastery to other compulsions and simply refuse to carry them out. That is, if I'm walking down the sidewalk and becoming frustrated by my carefully orchestrated walking on cracks, I can become conscious of the disorder in my mind and deliberately tell myself, "You don't need to do that." At that point, I am free — either to continue the pattern or not, but of my own choice. It doesn't always work; it doesn't always work the first time, for sure. But it has been very helpful for me. I would share that tool with Mikko, if he wanted it and was prepared to receive it. I found out, incidentally, that behavior modification to halt the compulsions is one of the primary treatment methods of OCD, which is one reason I feel I'm already instinctually handling this the best way there is to handle it. I'd be happy to pass along the technique and the change in mindset, if they're useful.
I think, too, I want to be vigilant for further signs of mental distress. I want to make sure Mikko doesn't feel the need to go it alone, if any mental problems threaten to swamp him. Just because I self-diagnosed and self-treated doesn't mean he has to, and I want to make sure he always has the support he needs.
Finally, I want to make it clear that people with mental illness are still people. We're still nuanced, and valuable, and productive. We're not a joke or a scary story. It's all right to have something wrong with your brain; a lot of us do.
That's where I'm at now, in these very early stages of suspecting mild OCD in my son but not for certain knowing. I want to be prepared, though. I want to do more than tell him funny stories and show him that video when he gets older. I want him to know he's not alone, that I've been there too, and that we'll get through this together.
What are your thoughts on guiding a child through a hereditary illness, whether physical or emotional/mental?