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 it..at 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.