Things don't always go as planned. A few months ago I took my first steps with my toes tied to my shins. Slowly, my mobility returned and the paralysis subsided as my CRPS flares crept into remission. I was so excited I couldn't contain myself. I saw myself running down the block. Until I tried walking on my own. Something I evidently forgot to consult my spine on prior to my steps.
Five minutes. That's my limit. I can stand or make my way with a pronounced limp for up to five minutes. Then it all gives way. My lower spine fills with bricks, my left leg locks and fills with lead. The neck aches for forgiveness and I am done. But those five minutes are the best minutes of my life. Because I never thought they would be mine.
My treatments have changed my life. I can make my way around the house and be independent again. I must use the chair outside of the house or I'll never get anywhere. I've had to relearn many things over the year, but the greatest feat I've made is acceptance of where I am at. It's not an easy thing to do, accepting a life that you never thought would be.
My life was supposed to be someone else's. Like when there's a shooting at a mall and the witnesses say they never thought it could happen to them. It begins with a sense of shock and awe then denial. After that anger and depression. That was fun. Then ultimately, acceptance.
The important thing is not to confuse acceptance with surrender. I am not waving a white flag by any means.
In accepting the imperfection of my journey I am learning to love the ugly baby. It may not be pretty, but it's mine. I may not walk normally, but I can walk enough that life is better than it was. I may still use a wheelchair, but can lift my legs to shave.
Believe me, it's not that I don't get frustrated. One night I actually made it out to a special dinner. I was so excited to still be awake at eight at night in Hollywood at a busy restaurant called Osteria Mezzo. Don wheeled me up to the front door. I breathed a sigh of relief as I saw the blue handicapped sticker in the window. Upon squeezing through the crowded front door area, I noticed the hostess station blocked the entrance to the dining area except for a thin slit on each side. For skinny models. Not a titanium wheelchair barely wider than my bum. Which then made me question the width of my bum. They told us that our party was in the back dining room. They then, to my embarrassment, began trying to shove the hostess station to make the passage wider for me. But to no avail. The hostess announced we would have to get there through a side entrance.
My moment of excitement, of being in a beautiful environment and passing through the dining area was swiftly replaced by a bumping of people back through the main entry, around a crumbled sidewalk where my wheel got stuck and briefly threw my body forward, around a corner of smokers and to an entrance barely wide enough for my chair that scraped my knuckle as I pushed my way up and over the lip on the floor.
We still had a wonderful evening, but it took time for me to reboot - to feel human, like a lady again.
So no, it's not easy. But is life ever really easy? I used to get stuck in traffic. Now I get stuck in sidewalks.
I wish things were different. I wish everywhere I went fit me to a tee. Maybe someday they will. My story isn't over yet. There is still a life to be rebuilt.
I just try to remain grateful I am not still stuck in bed. When friends would come to feed me and I could not lift my head. I live for those five minutes when I look down instead of up. When I breathe for those precious moments when living simply, is enough.