Mortality

Last Tuesday, I spoke to a cancer support group. It was difficult for me to do. I spent a great deal of time preparing. Talking about our own mortality is difficult. Those of us who can do that have learned to truly embrace the present moment and all the good things life has to offer.

As I looked around the room, my mind went back to a dinner about a year ago. The dinner guests included lupus researcher, a top rheumatologist, and potential donors. During the meal they naturally talked about lupus. When it came to mortality from lupus, I spoke up saying, "It's really hard for those of us with lupus to hear you talk about mortality statistics." And it was. And it is.

One of my fellow teachers has a husband with severe lupus. On Wednesday of this past week, he died from complications of lupus, leaving behind a wife and two young children. Camilo Molina, rest in peace and my light perpetual shine upon you.

I Know Someone

She sat next to me in the waiting room at the doctor’s office. It was my first visit since I was diagnosed in the hospital. I was still numb with shock. She said, “I had a friend who had your disease. Her organs shut down one by one. It was such a horrible death. “ I changed the subject. She recounted more grizzly details. I said nothing. I pictured myself stuffing a sock in her mouth.

Why do people say such things? Why didn’t I ask her to stop immediately? How can I handle this differently the next time?

Life Expectancy

Halfway through my daily walk, I stop for five minutes to really savor the view of the bay. At dawn and dusk, the pelicans and seagulls are gliding over the water looking for some tasty fish. I usually think about the birds and wonder how they can see fish through the glare of the sun on the water. But this morning, when a seagull dove to catch a little fish, I thought about the fish instead.

Here was this little fish, swimming along happily near the surface of the water, probably enjoying the warmth of the sun and SPLASH BAM he is in the belly of a gull. I stopped and thought about life expectancy. Patients ask me all the time what their life expectancy is with lupus. When I was first daignosed in 2003 that was one of my top three questions. My rheumatologist didn't have an answer. I don't have an answer for the patients who ask me.

When we get ourselves all tied up in the issue of life expectancy, we forget to live now. That little fish was not sitting around wondering how long he would live. It was doing what fish do, swimming and eating. Sick people can often live for a long time. Healthy people can die suddenly, just like that little fish. What matters is what we do with the time we have right now!

Unbelievable and the beat goes on...

The voice mail on my cell was full. It happens. If I miss a call, I look at who called and call them back. Unless, that is, I don't recognize the number. Last night the voice mail was full. A dear friend with whom I was having lunch today called to ask if we could meet an hour earlier. Of course, I did not get the message, but did call him back. He was frustrated by the full message, so I decided it was time to listen to the 20 messages hanging out in the in box.

Well...........

There was a message from Integrated Benefits, the folks who handled my disability case. The nice young man informed me that the lawyer had reviewed my case and the three rejections for Social Security Disability and that the lawyer thought we had a case. So, we are going ahead with an appeal in Federal court. It will probably be another 18 months before there is a hearing. That would be April 2011. I filed for disability when I desparately needed it in September of 2003 after trying my very best to work for 6 months.

I don't have a lot to gain from this. Maybe 1-2 thousand dollars. My back payments would go to Mutual of Omaha. Any cost of living increases would go to me. Now, I could let this go and that would be the end of it. But, to tell the truth, I was thrown away by my own government and that really, really hurts. People die while waiting to go through the system. Believe it or not, it happens. And did you know that if you DO get approved for SSDI, you do not get any health insurance for two years after the date you applied?

Everyone has a right to life.

As health care forums and updates have been going on around the country today, tea baggers have been doing the most horrid and irrational things. We need dialogue and we need action. No system is perfect, but some systems are more perfect than others. What is clear is that THIS current system may respect the lives of those in utero, but those of us who are quite outside the uterus and functioning in the world are expendable.

It will take time to fix things. I hope the time is short.

Inevitable

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.