People think it’s fun inside The Bubble. It is…we have fun, and I can’t deny it. People think it’s comfortable and, yes, I have to agree with that; when you live your life with J’s well-being and comfort first and foremost on your mind, you can’t help going to great lengths to ensure that his (and your) life is not mired in things that make it more awkward than it already is. People think The Bubble is safe; it is because we try to make it safe, but…we know it’s neither failsafe nor foolproof. People think that we don’t worry about anything outside The Bubble; they confuse the isolation imposed on us by J’s Autism with Egotism. People need to a) get a clue, b) buy a dictionary and actually use it, and c) thank their lucky stars I don’t say more of what’s on my mind when they say stupid things.
I don’t know if you, too, consider yourself to be living in a bubble, but I -for one- am very grateful that our bubble has soft, bouncy walls against which I can bang my head in frustration with a minimum of damage. Like a cell wall, the walls of The Bubble are partially permeable, and things come in and disrupt the groove of our apparent peace. I say “apparent peace” because it’s more like “relative calm” or “harmonically-pleasant chaos,” not because it’s not rainbows and unicorns from time to time. (Unicorns are not allowed in The Bubble…if they pierce the bubble-wall the rest of the world would have to deal with that which we find fit to keep from them…that is: the truth about what it’s like to be us.)
Things get out of The Bubble from time to time, and for this I take full responsibility. I would chalk it up to being a good advocate for J, but I think at this point I am more of an impatient middle-aged woman often motivated by shifting hormonal levels and hot flashes. The truth of the matter is that, while I will not often expand on how I feel about some of the things people feel compelled to say or do, I will gladly not just shut up and smile anymore. As I told Dada a few days ago (on the ebb tide of an outburst caused by…never mind…) “I think I’ve reached a point in my life when my youngest child is 18, and being closer to 50 than 40 I think I’ve paid enough dues to be entitled to tell people what’s on my mind, especially if I think it through, use nice words and clearly express my ideas.”
The Bubble is more to keep us IN than to keep others OUT. We have learned that the world has little interest in (or excitement for) J’s ups and downs. Please, don’t think that I’m saying people don’t care; what I am saying is that J cannot, should not and will not be front and center in their lives because, well, they have their own concerns. This is not bad; in fact, we don’t begrudge people their lives, interests, hobbies, occupations, milestones, etc. Tolstoy, for crying out loud, started Anna Karenina with “All happy families are alike; every unhappy family is unhappy in its own way.” That, my friends, should tell us something; that we often find that we don’t know what our acquaintances are going through until something bad happens, should be even more telling.
I don’t like it when people say “but why didn’t you tell us???” in that earnest way that is intended to convey caring and concern. Maybe they care and are concerned, but this is no justification for us spewing out whatever is ailing us from time to time. I don’t want us to be seen as victims, and people still want to think we’re victimized by this mess called Autism. What people don’t understand is that we cannot be victims because the boat is big and we’re all in it, and we each have an oar to pull, although at times we don’t quite do a good job of rowing in unison. It’s not the boat (the S.S. Autism) that is the problem, but rather the barnacles attached to it…the little things that attach themselves (because they’re supposed to,) and sort of stay there. We are used to them, of course, but it doesn’t make them any less noticeable. Over the years, things get piled on top of things, and to try to explain them to an outsider (a non-Bubbler) is daunting.
I think my main problem is that some people confuse our particular Autism-related bubble with egotism. They don’t think The Bubble is fun, comfortable, safe and isolated for the benefit of others; they think The Bubble is purely and simply to prevent others from disrupting whatever utopia they think we live in.
Dada and I were watching The Descendants yesterday afternoon (because a movie set in Hawaii is always good to watch when snow is piling up outside your door.) At the beginning of the movie, George Clooney’s character announces: My friends on the mainland think just because I live in Hawaii, my life is paradise. Like a permanent vacation. We’re all just out here sipping Mai Tais, shaking our hips, catching waves. Are they insane? How can they possibly think our families are less screwed up, our cancer’s less fatal, our heartaches less painful. Hell i haven’t been on a surfboard in fifteen years. For the last 23 days, I’ve been living in a paradise of IVs and urine bags and trachea tubes. Paradise? Paradise can go fuck itself.
Granted, we’re not in Hawaii, and our “crisis” has lasted longer than 23 days. People, however, still operate under the mistaken impression that we are oblivious to and untouched by the outside world. We are, in their minds, egotists that only worry about our own bullshit. Yes, our bullshit is front and center, there’s no denying that; no, it’s not the only bullshit we worry about. Yes, we think J is awesome, and we’re proud of him, but we don’t think that it’s necessary to inject steroids on his achievements to feel better about his at-times negligible progress. I don’t need to feed my ego by saying J rubbed his belly, patted his head and hopped on one foot while singing his favorite aria from Le Nozze di Figaro…if I say J did something, J did it. It’s as simple as that.
My beef is simple. Short of trespassing on J’s privacy and filming his days to provide proof of his achievements, personality, tribulations and travails, I can’t offer proof of anything. The world is going to have to exercise a little blind faith on this one. The only thing I can say to those who express doubt (because that is what “REALLY???” means, especially when followed by a “don’t get me wrong…”) is that the more you know about Autism, the less stunned you will be about the possibilities. The more you know US, the less doubtful you will be about our sincerity. But here’s the kicker….
If people even put any effort into getting to know J…oh, why bother…it’s so much easier to say “oh, I know!” like they actually do… “I know?” “I know” can go fuck itself…