When I was diagnosed with Parkinson’s disease last year, I had to face the fact that my future was uncertain. But, then again, everyone’s future is uncertain. I mean, it is uncharted territory, after all. We haven’t been there, yet. There isn’t anyone who can say with certainty what they will be doing a year from now. We like to think that we have control over our lives but we really don’t have as much control as we think we should. I learned that lesson every time I was pregnant. When it was time for the baby to come, it was going to come whether I was ready or not. I remember when our first son was born. I was so excited to be in labor, I could hardly contain myself! Our first child was about to be born, I was going to be a real mom, and everything was going to be wonderful and we would live happily ever after!
Then the baby came and HE decided when I was going to sleep and when I was going to wake up. He also decided (by being such a hungry kid) how often I was going to eat. He had preferences, too, about which foods I ate and would respond with several hours of colic if I ate something that he didn’t like. Control over my own life? Hah!
When I found I was in labor with our second son, my thoughts were a bit different. How could I be in labor? This baby wasn’t supposed to come for another THREE WEEKS! I needed those three weeks. I didn’t have anything ready. Couldn’t I go home and come back in a few days? Nope. Sorry. The body has taken over. You no longer have any control over it. And when I finally did get to go home, there were two little beings telling me when I could eat and when I could sleep and otherwise demanding my attention and bossing me around.
I did finally learn how to balance caring for my family and having some time for myself. Occasionally, I even saw my husband when we weren’t just passing each other in the kitchen. He graciously introduced himself to me and reminded me that he was the one who was snoring in bed when I came in at night. By the time our sons were 9 and 11, we must have been able to see each other a little more often because it was just about then that we discovered, to our amazement, that we were expecting another child!
When our daughter was on her way, I thought I was ready for anything. And then she decided to come 12 weeks early. Between hospital stays, doctor’s visits, therapies, and long nights, it took years before I felt that I was even remotely in control of my life. I can’t imagine how she felt. She didn’t even get to boss me around like her brothers did. At least not till she was a little older!
So, maybe what really concerns me about Parkinson’s is that my future isn’t as uncertain as all that. Parkinson’s is progressive and, as much as I am doing to make sure I can be upright as long as possible, there is the possibility that I may one day require much more help in just being able to live day to day. If that happens, I want others to know NOW how I want to be treated. I’m not taking any chances, you see. Though experience has taught me that it’s not very realistic, I still want to feel that I have some control over my life. Will I ever learn?
If I ever need others to take care of me, I want people around me who will allow me to live a normal life.
• Friends and family who will get me out of the house and into the world, even if I am grumpy about it.
• Friends who will pour me a glass of wine and help me drink it, even if I’m not supposed to have it.
• Friends who will tell me bullshit stories and make me laugh.
• Friends who will make me cry.
• Friends and family who won’t mind if I tell the same stories more than once.
• Gossip. If there is a juicy story, I will want to hear it.
• Adult stories. I don’t ever want to be talked to as a child. Politics, religion – don’t stick with “safe” subjects!! I want to always have an opinion. You can even swear, if you need to.
• Friends who will get mad at me from time to time. And who will take it if I get mad at them.
• Friends who will tell me if I’m out of line.
• I want my friends and family to tell me what is going on in their lives, even if it’s painful. Don’t keep things from me so I don’t worry. You are my family and my friends and I have every right to worry about you.
• Friends and family who will hold my hand or put an arm around my shoulder.
• At least one friend who is not afraid to kiss me on the lips, even if I drool.
• Someone who will sing with me, no matter how I sound.
Being normal, being a real living human being means experiencing life. And life is both beautiful and painful. Experiencing life means experiencing disappointments and triumphs, joy and intense sadness. Sometimes it means getting really pissed off, too. And it can be delightful to get really pissed off from time to time. It’s energizing and it keeps the brain working.
I don’t want to be wrapped in cotton wool. Being safe doesn’t mean padding all the corners and keeping me from falling down. Being alive means getting hurt from time to time. I don’t ever want to be too protected. I want to be able to struggle – physically and emotionally. I want to wrestle with the real questions of life and love and friendship and what does it all mean, anyway?!
I want to keep bumping into life and crashing into love. Life does make its marks on each of us, but don’t worry. The marks you see on me?
They’re just love bruises.
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