Monday, January 07, 2013

How Seeing Others' Problems
Helped Me See Past My Own

Something my husband said to me has been floating around in my head for weeks:

People's problems fill up their whole lives.

By this he meant that no matter what an individual's problems are, they have a tendency to take up all of his or her time, money and energy — no matter how much of these things he or she has been blessed with. Isn't it strange how that happens? That whether you are single and free, or married with children, or caregiving a child in need of 24-hour medical care, you still have problems and they are massively important to you, take everything you've got and leave you feeling inadequate to the task?

Living in the special needs world, I've been exposed to a dimension of parenthood that most people would like to pretend doesn't exist. I've met parents who have discovered after the death of their developmentally delayed first child at age 11 that their third has the same rare disorder. I've read testimonials of parents who've had to fend off "it's better this way" sentiments while grieving the loss of a severely disabled — yet no less beloved — child with total care needs. I've rejoiced with parents who consider it a miracle that their 6-year-old son can simply lift his head.

Malachi not particularly enjoying what was supposed to be
a fun New Year's Day trip to the snow.

I know that many people look at the subject matter of this blog and recoil. That's not for me, they say and click through. They don't want to come to grips with the reality that brain-injured children are in the realm of possibilities. They don't want to get to know children like my son.

I know I didn't and, in some cases, still don't.

Even two years in to this world, I still catch myself recoiling when I hear particularly horrific stories from elsewhere in Special Needs Land. But I still force myself to look, to watch the videos and do the mental acrobatics needed to see what is the child IS doing rather than what he isn't. It's getting much easier, but regrettably it still isn't automatic.

Part of me looks at those children and says "Thank God." Thank God Malachi is doing as well as he is, and maybe I had something to do with him being on this higher road?

But then I feel guilty about that. It is human nature to compare. It's how the brain works. And it's good — in fact, essential — to be able to see everything your disabled child has going for him. But I try to resist the urge to look at other people's situations and be relieved that it's them and not me. Because I know there are people out there who think the same of me, and I hate it. I know there are friends who use me as a cautionary tale. I know there are people who think their children are doing better than Malachi because they're doing it right and I'm doing it wrong.

Having survived the first two years of extreme uncertainty around the extent and quality of Malachi's brain injury, I know in my bones that I'm no different from those parents. Malachi could have very easily had cognitive impairments, or been a vegetable, or died. Nothing prevented that except the random seepage pattern of blood in his tiny newborn brain.

People's problems fill up their whole lives.

And what about the people I know who don't really have anything glaringly wrong in their lives? Do they seem any less stressed, any more happy? No, not really. This might be crass, but I can't help but notice that these mass shooters are almost always privileged middle-class white men who, by comparison to the rest of society, have everything going for them yet still blame the world for their lives not turning out the way they expected.

I'm sure every father who has held a dead baby in his arms has wanted to firebomb a mall. But they never do, do they? People who have real, serious problems — like whether or not they will eat that day — never seem to be the source of these rampages.

People's problems fill up their whole lives.

I am reading J.K. Rowling's new adult novel A Casual Vacancy. She's an excellent tale-weaver but it's no Harry Potter, that's for sure. I've spent most of the novel trying to figure out what the freaking point is.

But I think I've finally figured it out. The characters' problems fill up their whole lives. One character is even debilitated by imaginary problems that are entirely of his own invention. Externally, the parents have done everything to ensure their children are happy — gotten them into the best schools, made plenty of money, living in an idyllic English village that they are striving to keep "pure." But their children still hate them and hate the village and crave the "authenticity" of crime, drugs and sex.

The political drama at the heart of the novel consumes the lives and thoughts of the main characters. Though, Rowling occasionally shows glimpses of the fact that few people outside of the main characters know or care what's going on in their tiny little town council.

Perhaps I like the book because I reported on many heated small-town conflicts in my journalist days. It was always amazing to me both how little people outside the councils would understand how much power the council had and how important the councilors thought themselves when everybody else couldn't care less.

People's problems fill up their whole lives.

Rather than being depressed that people with objectively "better" or "worse" lives are just as unsatisfied as I am, I feel a little liberated. It means that even if I could change the external things that I so bitterly can't change — my family members' health, my financial situation, my perpetual lack of "enough" time — I still wouldn't be happy.

The very few people I see who are happy are happy from the inside, no matter what their personal circumstances. They make the conscious, daily choice not to be consumed by problems. They see and celebrate the corners of their lives that problems do not occupy. They stop themselves from turning hobbies into chores, from turning family outings into errands. They spend their energy not on the black-hole-like pursuit of "success" but on taking care of themselves, loving people, and helping others with their problems.

This does not seem like an easy task to me. I imagine it takes the same amount of effort, time and focus as any other life-changing goal. But becoming aware of the fact that we are — each of us — already making a choice as to how we see our lives might make it easier to choose the positive instead of the negative.

8 comments:

  1. In the first few years of Aidan's life I was consumed and fearful so I probably didn't have the best attitude and didn't really think anyone had it worse than me. Now that I've adjusted to the fact that this is our life, I can take it much more in stride and have re-adjusted my focus. With seizures entering the picture and though I am scared of them, I'm taking strength from this community of been there done that families. That feels so much more valuable than a pissing contest.

    Thanks for sharing this.

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    1. Definitely. Seeing the examples of others in Special Needs Land — especially when mass media never shows these sorts of situations — has helped me immensely. As I mentioned in this post — http://www.outrageousfortune.net/2012/02/disability-is-natural-but-learning-how.html — I think having segregated schools is really harmful to typical children who never have a chance to interact with SPN kids and see them as a normal part of the spectrum of human existence.

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  2. I loved this post so much - it really spoke to me. Something that always bothers me is when someone starts to tell me about a problem they are having and then they stop short and say, "Why am I telling you... this is nothing compared to what you deal with." I hate that. Because it's true - that people's problems fill up their whole lives. But that sure doesn't meant that one problem is more important or more dramatic or more worthy of attention than another. Before the Cerebral Palsy fairy came to our house, my "other problems" seemed just as huge. Everyone has a story. Thank you for sharing yours - I really love your blog.

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    Replies
    1. Yes, I know it's the opposite of what people intend, but sometimes when friends say things like that it makes me feel like they are putting me outside their circle, telling me that we're so different we don't have anything in common. If anything, I'm much *more* sympathetic to their "lesser" problems than I was before because I know how big they can feel.

      And thanks for the kind words!

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  3. Great post Shasta. I've thought almost the same thing before, but only differently. When I look back at my life before my son was born (he also has CP) I sort of think I had the perfect life and didn't even know it. I had no reasons to complain but I don't remember being idyllically happy. It didn't feel perfect, only in hindsight. And I see other people completely stressed out about something that seems so mundane to me that I realize we've all got issues or as you put it - problems that consume us. I think once you have a special needs kiddo though, you have a new definition of "problem"

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    1. Totally. You would probably like my post on the Land of Not OK if you haven't read it yet. http://www.outrageousfortune.net/2011/09/dispatches-from-land-of-not-ok.html

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    2. Thanks Shasta. I've gone back and read a bumch of your other posts but somehow missed that one. You described it perfectly!

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  4. Such a good post Shasta! You put this all into context so well. Peoples problems consume them and cause people to become trapped in their own little world.

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