“Inside I’m thinking”

November 30, 2007

I was driving to work this morning, in my usual on the verge of tears stew about what I’m doing and not doing and should be doing with my life, knowing that I have nothing to complain about and still not able to really give up the chew toy and enjoy the sunshine. I was kind of tuning out the NPR–John McCain talking about how the first thing he would do in office being to undo all the Democrats’ work to set a “surrender date,” the new usual bad news about the economy. And I didn’t even notice this story when it started, b/c I think I’ve gotten used to tuning out the words “Story Corps” too. But once the actual story started, I was stopped in my tracks, which is good, b/c I was at a red light. It’s such a short piece, I urge anyone who reads this to click on that link and read it or listen to. I would almost copy and paste the whole thing in, it’s that good (and short).  It’s a short testimonial by Charles Jackson, a man who at 13 learned that his mother carried the gene for early-onset Alzheimer’s. He spent the rest of his childhood watching his mother deteriorate, and at age 50 he too was diagnosed with the disease.  This sentence, in which he talks about the effect of his disease on his family, is simple and powerful: “I know that when they see my failing, they get really sad and they don’t like to see that. I wish they would try to understand that I may be a little different. There’s a time there where I will forget everybody’s name, but inside I’m still here. I’m still me. And though my speech may be poor, inside I’m thinking how much fun I’m having with them. And I, as much as possible, would like to be treated as [I] had been treated before.”

I think this statement hit me so hard because I often struggle to find a balance between fighting to change things–in my life, in the world, in my family–and remembering that this too, is being alive. Being sick, being poor, being in real danger for extended periods of time–that’s still being alive, even if it is not the life any of us would choose. No one in those situations really chose it, either. There must be ways to salvage hope and potential and meaning even in the worst of situations, and I think that often I don’t do myself any favors with my discontent. Neither does American society. We spend so much time and money on truly misguided attempts to “improve” life. At the same time, there are many, many things in this world that I believe we should not simply accept, that we should fight with all of our emotional and material means to change. I think that anger can be a gift, that being angry is often the first step to improving anything.  Things like the dire state of healthcare in the US, global wage and work inequity, global warming, things about which I think we should recognize the difference between the laziness of calling it “impossible to fix” and the reality of things that are actually impossible to fix. As a society, I often think that we’ve lost our capacity to deal with situations that genuinely fall into the latter category. And instead of mourning and feeling sad that there are basic things about human life that are beyond our control and always will be, we just ignore it and shut the people who are experiencing those things out of our consciousness. We focus on the problem and fixing the problem and protesting the problem and often make little effort to be human beings to each other in the simplest and paradoxically most difficult ways. I felt this way when I was with the kids as we “served” the homeless. It felt much more satisfying to be handing them food than just to be talking to them, but that’s what really impressed them, the fact that we sat down and talked. Do they need food–yes, and they should have it. But they need more just like any of us, they need to feel like human beings. It’s even harder when I think about my own family, and my mother’s longterm health problems and my father’s unemployment. I am so angry at the culture that promotes weight loss surgery as an acceptable surgical intervention for underlying emotional problems and so angry at the marketplace that cannot seem to generate work that allows people laid-off midcareer to support themselves with a modicum of dignity. The thing is, I can’t fix those things overnight, and even if I did, it wouldn’t necessarily help my mom and dad in their moment to moment, day to day experience of life. What I can do and should do more of is remember that my company, my ears, my empathy are not small contributions nor are they always easy to give. Charles Jackson knows that his Alzheimer’s is not going a way. What does he want? To be loved for the person he always was and still is. Why is that sometimes so much harder than racing for the cure?


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