There’s a saying, “If you want to make God laugh, tell Her your plans.” A chronic illness is like a message from the universe or God saying “Stop planning and start living.” This message has the power to change lives in wonderful ways.
I once interviewed a man named Rob about how living with AIDS had affected him. He said, “Being confronted with my own mortality…knowing that I have a finite amount of time here, and embracing the power that comes from knowing you’re not immortal. Knowing I don’t have forever to do the things I want to do, so I better do them now.”
Knowing that he only had a few years left, he decided to make the most of them. “I’d lived in the San Francisco Bay Area my whole life. I wanted to see the rest of the country, but I had been waiting for someone else to go with me. But now I took off. I learned that if something is important to me, I need to be out there doing it, not waiting for someone’s permission.”
Rob didn’t cut himself off from other people. He made a travelogue, which he sent out from his motor home. He didn’t abandon his medical care. When he got too sick, he came home for more treatment. When the protease inhibitor drugs came out, he started taking them.
That was 20 years ago. Now he is counselor with a college degree helping other people with AIDS to cope and live well. But the fact remains that he decided to take his trip — living as if now was all he had — and he is still alive, whereas nearly all his friends from the time he contracted AIDS are dead. In addition, people who have seen his travel diaries tell me they are very glad to have read them.
Whether it’s AIDS or arthritis or diabetes, a chronic illness pushes us to live today. It shows us our limits. We always had them, but most of us choose to live as if we are not only immortal, but superhuman. That unrealistic attitude wastes our energy. “Should I do this or that or this other thing? I want to do X, but I’ll do something else. What difference does it make? I have the rest of my life, which is forever.”
But we don’t have forever, and illness demonstrates that fact with symptoms, disabilities, and scary predictions of complications. It gives us undeniable evidence of our mortality, encouraging us to change, adapt, grow, and focus.
It’s too bad that it takes getting sick to move most of us to appreciate life. But the demands of living in a materialistic society can blind us to what’s really important. I interviewed Lindsay, a nurse with lupus, for my first book The Art of Getting Well. She sounded a familiar note: “I used to try to be all things to all people. I was rearranging deck chairs on the Titanic. If I hadn’t gotten sick, I wouldn’t have spent one minute living in the moment. I would have missed my whole life, not realizing that it is so precious.”
Limits aren’t the only lessons illness teaches. For me, living in the moment requires having faith that things will be all right without my active participation. So I’m trying to learn to have faith.
Lisa Copen, founder of Rest Ministries, a Christian chronic illness community, told me, “Dealing with daily chronic pain is exhausting and excruciating. Knowing that the God I believe in still has my best interests at heart, and that He watches over my family and my ministry…gives me the ability to ‘rest’ in spirit and not use any energy on worrying.”
But faith doesn’t require a belief in God. I remember what a homeless poet told me in San Francisco: “Faith is belief in the world, in the future, that even when you don’t know what is going on, things will be all right.” Faith in the future helps me let go and live for now.
I think living in the moment helps me cope with disability. I need to do about ninety minutes of stretching every day to maintain my limited mobility. It used to be really hard — boring, time-consuming, annoying. Lately I’ve been getting better at appreciating the time for what it is — breathing, focusing on my body. It feels good.
Does any of this apply to your life with diabetes? Has diabetes helped you accept your limits, or has it been more of a challenge to your faith? As always, your stories are appreciated.
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Disability activist Susan Haight-Liotta says, “Disability doesn’t mean giving up doing things. It means finding different ways to do them.” So on Wednesday, I’m taking my scooter on BART to Occupy Oakland for their one-day general strike. I’ll let you know how it goes, if you don’t see it on YouTube.
