Putting this spin on my life is exhausting. I was thinking about this as I scanned the Michael J. Fox article and looked at his photo on the cover of Good Housekeeping when getting my nails done yesterday.
Sometimes it’s not fine. Sometimes I want to go, “Bad deal. Need a do over. Not happy. Nope. Not working out here.”
I feel pressure — from Michael J. Fox? — to make the difficult seem easy and the abnormal seem normal. So what if my husband has Parkinson’s Disease? I should just grin and bear it (as Tracy Pollan seems to do. You don’t hear her saying, “It’s tough living with this dude who has Parkinson’s Disease.”)
Look, Michael J. Fox is an amazing person doing amazing stuff but not every person with Parkinson’s can perform at his level. Perhaps Fox’s nobility and engagement in life (and his more abundant resources of physical therapy and money and access?) make me and other families with Parkinson’s feel a failure. Sometimes, the disease actually kicks your butt and you are not happy and smiling and ready for the cover shot. You are not always looking up.
Occasionally someone will say to me, “I don’t know how you do it. He would drive me crazy.” And for that I say, “Thank you!” Because the people who say, “He looks great. Can’t even tell there’s anything wrong.” make me feel bad, like I shouldn’t notice his crazy behavior or at times embarrassing demeanor. And to those of you who are right now saying in your head, ‘Mary Beth, it’s worse for him.’ Yes, you’re right. And I know that. And I’m sorry and I feel sad about that. I try for compassion on a daily, hourly, momentary basis. But this is my blog and my truth.
How positive should I be? How much is my positive attitude denial? How optimistic can any caregiver be? How encouraging should we be when faced with a disease in the family? And can we acknowledge in all honesty that times can be difficult?
And of course times can be great. And I look for and find joy. I try to follow my own rules to live by and find a deeper meaning to my life.
I do have a lot of gratitude for the people in my life, especially for my husband. That doesn’t mean that I don’t have a lot of frustration too. It’s a dance of honesty, encouragement and denial. And to all of this I say to Michael J. Fox’s smiling face on the cover of the magazine, “Everything’s fine, except when its’ not. I’m always looking up, except at times, when I look down. And life is made of moments of happiness and sadness; health and illness. It’s all part of the fabric of this life.”