Sunday, February 09, 2014

Lonely and Misunderstood

By Janet Edgren
a Restory Life post

Tim sits in his wheelchair watching his daughter dance at her wedding. Friends and relatives walk around him. They pass by as if he’s not there. The pain is clear in his soft blue eyes. He cannot talk. But his mind is clear. What is he thinking?

Tim drools, he appears to make others uncomfortable, they leave a distance around him.

The night continues late. Tim is worn out, slumps in his wheelchair. No one notices. They are all too busy dancing, enjoying the wedding, to think about him.

His wife does notice, wheels him to his daughter, who kisses him goodbye, tears in both their eyes. Because she cares. Thanks Dad. Tim softly cries as he is wheeled to the car, he should have been the one to dance with his daughter at her wedding.

 As his sister, I witnessed all this, not understanding his feelings.
Until the disease attacked me, a year later.

I watched Tim go from a handsome active thirty something – a painter, who had a large business – to a lonely, drooling, misunderstood man who is dying slowly.

The fear of it all hits me full force. Will my family and friends treat me this way?  Will I too be misunderstood?

Now I’m in the drooling stage. Will I loose my voice, too? Will I sit alone in my own wheelchair wishing for a hug, a smile, someone to speak to me, look in my eyes, to care?

 Am I going to be able to go to my grand kids’ weddings? Will I be the one in the wheelchair that no one notices? I wonder?

I have a wonderful husband who does care, as did Tim’s wife. But she got so worn out with his care, will my husband?

This is written for those in contact with Parkinson's. Friends, family, and sometimes strangers.

All people need a smile and a kind word, from time to time, especially the person who has a disease which changes them from what they once were.

Don’t just walk past them. Acknowledge them. Look them in the eyes. Show them you care about who they are.

None of us know what is around the corner. Live a compassionate life now. Don’t wait until you are sitting in a wheelchair.

I have Parkinson’s, and by the Grace of God, on the outside I look fairly normal. But my insides are changing. I am slowing down. I drool. I loose control of my bladder. I have a soft voice. I can’t sleep.

What is next? Who knows?

Fear sets in. What is life going to be for me?

A lonely wheelchair?

Please read this and know:
YOU can make a difference in my life or the life of someone else you come across.


I was born 1949 in Evanston Illinois. I was one of five children, the rest boys.
My Dad was a painter. He could not make up his mind about California or  Illinois, we moved a lot. 
I went to high school at NewBury Academy, in California, then to Loma Linda to become a licensed vocational nurse nurse. 
I got married, moved to Redding, California, and had two children. Then I went on to become a registered nurse and worked in the Operating Room for many years.
I remarried fourteen years ago.  
The last six years, I have had Parkinson's disease.
My brother Tim died two years ago.

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