Thursday, April 23, 2009

The Wonder of Freedom

I live on the corner in a small city. Bus's come and go on my corner and I watch people waiting for the buses, sometimes huddling together during bad weather. Mothers and fathers walk past my house on their way to the large daycare center at the bottom of the hill. The problem is that I don't think of this as a house in the middle of a city. My tiny and I do mean tiny house has one amazing thing about it. The front has a sun room with almost floor to ceiling windows. Not knowing any better about cost and interest rates we had the windows installed almost the second we bought the house over 20 years ago. Now I've filled the windows with plants and anything else that meets my fancy. I pretend the room and my house is in the middle of the country. This can cause some problems when I dress as if I'm completely alone in the country - like staying in my pajamas all day. I'm usually yanked back to reality when someone runs the stop sign almost directly beside my house. The street ends in a T and running the stop sign can mean smashing into whoever is driving down the straight part of the T. It also means having to put up with people spinning their wheels and gunning their engines as they climb the hill. After 20 years I've become pretty tolerant about the cars. I have not, however, given up the feeling of living in the country. I live in one of those city's called "A Tree City." This means that back when America had money there was a grant program that provided seedlings to city's so they could move from asphalt to green. Since there was no money to maintain the trees they periodically have to be cut down due to old age but by and large it makes my little city quite pretty. Its one of the many things I love about it. When my British husband visited for the first time the crab apple trees were blooming. He was quite astonished.

I pretty much stay in pajamas unless all day unless I have to go out. For instance today is one of my favorite days - no doctor appointments, thus no reason to get into real clothes. The problem is I'm beginning to understand how old women become recluses who forget to shower, dress or even leave the house. I call them "Window Widows." We've all seen them. They sit staring out their windows, never moving, leaving us wondering why they don't leave the house. I live in terror of becoming a window widow and force myself every day to do something like work on my quilting, answer my email, something that makes me move. Still I have to admit there are definitely days when, due to the various illnesses, movement goes beyond a challenge to damn near impossible. Getting back to the title of this blog - the Wonder of Freedom - I have suffered for years from what I call the "Hurry Hurry's." I suspect many people suffer from this, particularly women. "Hurry hurry and get dressed. Don't read that newspaper you don't have the time. Why aren't you downstairs working on something substantive? Now you would think that the possibility of dying would make me move faster but In fact its helping me move slower. To do the many things I still want to do I have to slow down so I get them right and in the slowing down I'm finding an amazing peacefulness. Again you'd think someone whose retired has all the time in the world but trust me when I tell you it ain't easy to go from Type A to retired. Before I got seriously ill I thought I should tear down the house and rebuild it. After all I had to time. I'm working on creating daily time things I must do and daily things I want to do. Like at 8am do all my medical stuff (test for blood sugar, test for blood pressure, take insulin, take pills, spend 2 minutes on treadmill (it might not sound like much to you but any day I can move my legs is a very big deal) put in eye drops and on and on. On the one hand all the medical stuff bugs me and on the other hand I think its really important to show the transplant people I can toe the line and do whatever they ask of me. on time. I heard about a man who had to take 60 pills a day after the transplant so his body wouldn't reject the lung. At first it sounded like alot but I took a look at MY pill box and there are already over 20 pills in there. I was amazed. Well my fingers are giving me those signals that mean get off the keyboard stupid. I'll be back later.

Monday, April 20, 2009

Coming Out Of The Death Closet

I've never been know for doing anything quietly but I honestly didn't know just how taboo talking about death is in America. It's right up there with not talking about money. I'm hoping that what we're going through with the economy now will change that but, smile, I digress. When the doctor explained that, after years of pneumonia, bronchitis, pleurisy and everything in between, scar tissue had built up and was destroying my left lung. Now I knew things were bad. I'm on oxygen 24/7 and sometimes just walking up the steps or across the living room leaves me breathless. But when he said that my lungs were deteriorating and I needed to get moving on applying for a lung transplant he definitely got my attention. He also said it can take from 6 months to 2 years to get the transplant and most people in my condition die before they reach that point. Not to mention have systemic lupus will probably make the transplant committee very unhappy. Yep...I broke down. My husband broke down. Hell I expected the doctor to break down but he didn't. Now this may sound strange but my first reaction was embarrassment and shame. I didn't want to tell anyone. What if they were wrong and I not only didn't need a lung transplant but I wasn't going to die. If I'm around a year from now I'll now only look like an idiot but I'll appear to be a liar. Then I realized I've spent my entire life worrying about what people think of me. Sometimes it's stopped me and sometimes now but it's always exhausted me. So hung up on what people think of me that I won't tell them I'm dying. Now that's ridiculous.

The first thing I discovered is boundaries start falling like leaves when you think you're going to die. It';s amazing. The things I've always wanted to say but couldn't or wouldn't seem to jump right out of my mouth - good and bad. I saw an older couple having dinner when I went in to pick up take out. She was leaning against him and he was holding her hand. I walked right over to them and complimented them on what seem to clearly be a long and loving relationship. They were smiling so broadly you could have lite the room with it. The cashier in the grocery store was complaining loudly about this really terrible horrible day. So I said "I bet my day is worse than yours. I'm dying." That stopped him in his tracks. I never realized how much we control what we say, what we think. But my boundaries just keep falling and I'm actually learning to enjoy least a bit.

The flip side of all this is everything from extreme pain to a loss of energy to the recognition that there are things I will never do again. Some days I'm heartbroken. Some days I mad as hell. The pain is relentless and I'm no crybaby about pain. I've been dealing with lupus and rheumatoid arthritis for over ten years. Believe me I know pain. But today, for instance, I can't draw in a deep breath. I had to mash my food up like baby food because the whole swallowing thing is tied to lung dysfunction. I was determined I was going to eat anyway. Big mistake. I've got to me more careful. My husband is sleeping (remember he works the night shift) and if I'd gotten literally choked up on the food there'd be no one to help. There are alot of things like that that I'm not ready to face yet let alone talk about. But this is me coming out of the death closet online for the first time. It's scary stuff but I figure there have got to be at least one or two folks out there going through the same thing. I know it sounds old but maybe following my journey will help with theirs.