Poor Me

June 17, 2006 at 4:23 pm (Uncategorized)

I’m not having a good day.

It doesn’t help that I’m exhausted. Andrew slept even worse than usual last night. He awoke around 3 AM screaming, “I do not like that animal.” We had to turn on the lights and try to convince him that it was all a bad dream, that there was no vicious animal that had crossed over from the nightmare realm to the bedroom. He finally fell asleep with one eye open, after jerking awake a dozen or so times, mumbling about that “animal.” This morning he was chipper again and even described his nightmare to us. Apparently he was being chased by “a really big animal just like stegosaurus.” “Wow. That sounds really scary,” we said. “His name,” Andrew continued solemnly is “Coyote-O.” Keep in mind this child is two, and that to the best of my knowledge, no one has ever frightened him with either a stegosaurus or a coyote. Where does this stuff come from? I must admit there are moments – few and far between, and usually in the dead hours of the night – that I wish I had a slightly less intelligent and creative little boy. You know, the kind that sleeps.

It also doesn’t help that I still feel incredibly sick. Several people close to me have pointed out that I have, er, unrealistic expectations when it comes to illness. “You have pneumonia,” Jay screamed at me, as I whined about being confined to bed for “another day.” It occurred to me as I tossed and turned in bed, contemplating the pile of magazines and books next to my bed that I am just too wiped out to read, that I am the least likely candidate to succeed at having an acute, much less a chronic, illness. I lose patience with the whole resting and recuperating thing after about two days, at which point I want to tidy up the room, change the bedsheets, go to the gym, write a novel, win the Pulitzer Prize. You know, realistic expectations. But instead of ruling the world after a couple of days of antibiotics. I continue to have this horrible pressure in my chest, a headache, and mid-level lousiness pervading every fiber of my being. Someone told me that pneumonia means you have puss pockets in your lungs. That thought has been horrifying me all day long, along with the fact that my heart has been acting up and doing what feels like a tango in my chest cavity.

Poor me. Puss pockets in my lungs. Palpitations. A headache. A chronic illness on top of it all. A kid that won’t sleep. And a rumpled bed to boot

Once my mind starts executing these circuitous paths of perfect self-pity, it is time to employ one of Andrew’s new favorite words: “HALT!” “That means stop,” Andrew will tell you, if you ask. And that is just what I needed to do. That and remember the most important rule of the universe – things could always be worse, so stop yer complaining.

What do I mean by this? I call it my Back to Earth line of thinking. I probably heard it first from my grandmother, who learned it from her mother, and so on, back to the days of Eve after she was expelled from the Garden and Adam and kids kept mewling about having to wear clothes and work. But my hunch is that trying to keep perspective in the cosmic scale of suffering is decidedly uncool these days. It works for me, though.

Here’s how I steer my thoughts to come Back to Earth. “Yes, it’s true that I have a serious, and possibly fatal, chronic illness. It’s hard, and it sucks, but isn’t life itself a long, slow unwind into death? Waking up in the morning is a potentially fatal condition. Are things really that bad? Stop brooding!”

“Oh my God – That is so 1950s,” I can hear some of you shrieking. “Aren’t you invalidating yourself and your feelings?” Why yes, I am. I’ve had this disease for about two years and it is finally beginning to sink in that feelings are like Coyote-O of Andrew’s nightmare realm. Feelings are not real. They may feel real. But they’re not. Feeling afraid that I’m going to die in my sleep tonight does not mean I will die in my sleep tonight. Sometimes, the best antidote for feelings isn’t to give them the keys to the liquor cabinet, the car and a hundred bucks and tell them, “Now, go express yourself. Drag race through town; down the Scotch. But don’t cause any danger.” No, sometimes, I think it’s best to turn on the bedside lamp, look around the room, and tell myself, “There’s nothing here.”

Being acutely aware of my feelings – of how bad I feel and how lonely I feel and how scared I feel with this disease – does things to my psyche I don’t like. You’d think focusing on suffering and pain would make a person more empathetic. But for me, it doesn’t. I don’t notice all the other people out there who are sick and in pain and alone – unless I shut up my internal yammering and look around me. HALT.

Here’s what I see. There are so many people in my life alone who are far sicker than me and far braver in facing it. I have a cousin who is a warrior – there’s no other word to describe her. She has a defibrillator in her chest that fires hundreds of times a day, and she has to ingest a cocktail of drugs that makes mine look banal. She’s my age, and yet she has had several strokes. Still, every day, she wakes up, gets the kids to school, and does the things she needs to do. She even sends me cheerful cards to make me feel better. I have a friend who has been undergoing chemotherapy constantly for an entire year, and just learned that another friend, who reads this blog and worries about me and always offers to help me, is having surgery on Monday for a tumor. I received the most beautiful e-mail from an old friend of Jay’s who is in remission after battling cancer for two years. Her daughter is almost exactly the same age as Andrew. Sarcoidosis is just starting sounding a lot better.

The circle of sickness extends out from there. While we were in Philadelphia, our hotel was hosting one of Alex’s Lemonade Stands – a national fundraiser for children’s cancer. Children with cancer. Makes puss pockets seems fairly insignificant. And what about the millions of people, most of them children, who die from completely preventable diseases like malaria, every year? I’ve read that what would save their lives is bug-spray treated sleeping nets that cost less than twenty dollars. Twenty dollars. I think my PET scan cost something like $20,000.  You can see where this is heading, and I imagine you’re feeling like I’m being a downer – and a mean, preachy one at that. Yeah, well I have puss pockets in my chest and a big-ass coyote ruling my son’s nights.

We all had to take Introduction of Psychology. Do you remember good old Maslow’s hierarchy of needs? His premise was that there are certain needs, like food and shelter, that are more acute and that must be met before we seek to fulfill “higher” needs like spirituality and relationships. From my limited understanding, I took it to mean that you’ve got to eat before you find love. Herewith I propose Rebecca’s Hierarchy of Suffering. There are some conditions, like having cancer, or living in a war-torn country, or losing your parent to AIDS when you are an infant, that are way, way worse than others – like having sarcoidosis, or gaining weight, or going through a divorce. There are forms of sarcoidosis that are way, way worse than mine. About a month ago, one of the leaders in raising awareness about this disease, Dan Stoddard, died. He was 36 and left behind a toddler. (You can read about his struggles with this disease at http://www.sarcoidlife.org/my_story.htm)

Rebecca’s Hierarchy of Suffering doesn’t have to end in a worldview of doom and gloom. It doesn’t inevitably have to lead us to a dark place where all we see is the pain in the world and in others. It doesn’t make me evaluate suffering and disregard it. Rather it spurs me to compassion. I have a quote from what I believe is the Talmud stuck on post-it note to my computer: “Be kinder than necessary because everyone you meet is fighting some kind of battle.” And that includes me. It propels me to get out of bed and meet the day because, in reality, things are not as bad as they sometimes feel. And today, it is spurring me to get back in bed and stop whining until I am well enough to read a book to Andrew without getting out of breath.

Mostly, though, placing myself in the continuum of suffering makes me appreciate all that I have and all that I will, as a member of the living, lose one day. Today is one of those Montana summer days that would make an atheist believe in God. The air feels scrubbed, and the sun is warm without over-heating. It will be light until 10:00 at night. The poppies have unfurled in our yard, as have the lavender plants and apple blossoms. Earlier today, Andrew and Jay were playing in the driveway, amid the riot of orange and purple from the flowers. Andrew was hurling rocks and furiously pedaling his tricycle, flitting from place to place like a bee drunk on nectar. There was no thought of Coyote-O on his mind. You could tell by the peace and glee on his face. And that is as it should be on a sunny Montana day. Any dark thoughts should be met with one command: HALT.


  1. Your Mom said,

    You are wonderful, dear daughter. Would you like company Monday??


  2. Bobbie Goodin said,

    You write like your father, and that’s a compliment! I’m so sorry this is happening to you. Your dad has kept us sort of up to date on things,(the MSNClassmates Site), so it makes us feel as if we know you. Your parents must have done a great job on you! I had a surgery a yr. for the last 3 yrs. and last yrs. didn’t go as well as we had hoped and it took all yr, to recover and by that time the 3rd surgery had taken place which pushed me backwards a little. I knew it would get better in time, and didn’t have nearly the WONDERFUL attitude you are taking. What a great gift you are giving to your child!
    Thanks for writting. It’s a good story for all of us.
    Bobbie-sparkles, class of ’58

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