Sunday, April 26, 2009


Last week I was at a gathering of people who all shared concerns about the problems of chronic illness. Most of them were the caregiver types. As I listened, I began to wish that I could wave a magic wand and turn the gathering into a Codependents Anonymous meeting! These were wonderful, nice, compassionate and caring people. And sometimes that's the problem.

One after another they mentioned the stress that goes along with being a caregiver. (And yes, caregiving can be stressful.) Most of the people who were on the receiving end of care were hardly invalids. They could do most things for themselves, but the caregivers worried tha the patients did not take care of themselves, didn't take their meds, didn't comply with their treatment plans or (fill in the blank).

I reflected on my own experience with chronic illness adn the reactions of my family when I was at my worst. Caregivers try to fix us. They stress out when they can't do that. The worry that we'll die. (Everyone dies, by the way, even caregivers.) But what they don't realize is that we, the sick ones, pick up on their stress and frustration. Then we get to feel guilty because we are the source of their distress. And there's another part. As long as caregivers do for us what we are capable of doing for ourselves, we are enabled not to take care of ourselves.

Chronic disease brings loss of control. Caregivers "should" on their sick loved ones. The sick folks "should" on themselves. Doctors "should" on patients. "Shoulding" is a way of trying to gain control. Personally, whenever anyone "shoulds" on me, I do just the opposite!

What is there to do? I think there are two starting points. The first is good, honest communication. The second is to walk in the other person's shoes at least mentally. It's a good start!

Sunday, April 5, 2009


Last week, a long time friend lost her battle with breast cancer. She was 47, ten years younger than I am. My own mother died of breast cancer when she was just 42. And this winter I had a “questionable mammogram” requiring two rounds of additional imagining. Of course, I did a lot of reflecting on all kinds of things-far too many, and far too personal to share tonight.

My 2003 lupus adventure was life threatening. Thanks be to God, I am still here. I know that having systemic lupus doubles my risk for cardiovascular events and that the chemo I take to keep my own kidneys increases my risk of lymphoma. The history of cancer is strong on my mom’s side of the family. But do you know what? 99.44% of the time I don’t think about those things. Instead, I strengthen my resolve. I do my best to eat well, exercise (ARRGH), meditate and practice yoga in the hope of maximizing the amount of time that I can be functional and independent. But I know these things won’t make me immortal. The comedian Red Fox said that there are going to be a lot of embarrassed health nuts in nursing homes dying of nothing! I would love to be like my great grandma Babcha who, at the age of 94, simply went to sleep and never woke up.

Regardless of how we go, none of can escape dying. So we have a choice. We can waste our present moments obsessing about it, or we can live as fully as possible in the present. Or we can ignore the inevitable as long as possible, acting as if we have all the time in the world when all we have is this second. Either way, all we really have is now and we get to choose what we do with it.