Monday, December 7, 2009

A New Normal

I read an article on stigma. It told of a woman who was diagnosed with rheumatoid arthritis. She gave insight into her new world. She told of how she attended the graduation of her grand daughter. It was held in a stadium. Upon getting in the stadium, she looked at the stairs wondering how she was going to make it up to her seat. And then the seat. How was she going to sit on a concrete, backless bench for 2+ hours. Then she would have to walk back down all the stairs one at a time, one stair-two feet, one stair-two feet, and so on and so on with bones that had stiffened so badly from sitting still that long. Her new normal, so abnormal, but her new normal none the less.

The article then told of stigma. There is a societal norm we all try to impossibly obtain. The perfect spouse and family, the perfect home that is always well kept, the perfect job, etc. etc. and of course the perfectly flawless body. And a body that is vital and healthy.

In Greece hundreds of years ago, stigma meant flawed. Anyone with physical abnormalities had their problem either burned or cut into their bodies so that everyone could see and know they were weird, flawed, different, damaged goods. Then the rest of "normal"society would know to stay away. They were persecuted and sent to live away in their own communities. I can't imagine the shame and sorrow they and their families must have felt. I would have been sent to one of those camps, though I know my family would have thrown spiked balls, rocks, or even themselves, at those trying to take me away. Or they would have come with me.

Damaged goods.. hum.. There was a man in my neighborhood growing up. He had MS. He was a brilliant man. Every Sunday I would say hello to him as he sat slumped over in his wheelchair. He couldn't talk but he would turn his ever sparkling eyes up as best he good, and with a smile, he would nod back acknowledging my presence. His wife would push him everywhere they went. It was quite the process as she would have to get his wheelchair in and out of the car, then into where ever they were going. The Durhams also had a daughter that passed away from scleroderma, a daughter who had a massive stroke in the prime of her life, early 20's, and a son-in-law who committed suicide.

Ron's bishop growing up has had to bury 4 of their children. Another dear friend of my parents, Don Stagg, was blind, had MS and later on, got cancer. This man completed law school after he went blind. His wife would read all his text books to him so I say, she became a lawyer as well. The ironic thing is that Janet, his wife, passed away before her husband, from a very fast cancer. A mother of a dear friend, who was so energetic and vital was diagnosed with Alzheimer's when Susie was first married. Susie's children never knew their grandma when she was so healthy. Susie never had a mom that could help with her children, or call and ask for advice, all those things mother's do.

There are hundreds of stories that we all have of people we looked at a little differently, either out of sorrow, empathy, pity, or whatever. And now I am one of them. I probably have been all along as many of the Nelson's trials have been so visible.

It has taken me a lot longer to put up Christmas decorations. I have needed much more help. As I was trying to get some boxes down, I called Ron to help me. My wrists wouldn't let me hold on as I needed to. I expressed my frustration and sadness to Ron saying how I hated that I am more dependent than ever now, that I didn't like this part of my life. He replied that this is my life, my new normal. I cried that night in the solitude of my room realizing that he was right.

Yesterday in church, I was asked if my calling as Primary chorister was too much for me to handle. There have been a few times where I have gotten sick and dizzy while I was standing and singing. I would have to stop waving my arm, lean on the table. I don't know if it is too much, but what I do know, is that it is one of my all time favorite things to do in the church. A place I can really make a difference. I LOVE it! But now that I am damaged, people wonder, and I guess I do too. I don't want to be put out to pasture. I NEED to be involved, actively engaged.

All of the people above are hero's to me, examples of perseverance and faithfulness, come what may. I have no doubt that all are, or will be, those in the after life, whom we will look at in awe and wonder, and wish that we could have had the earthly experiences they had to have received the blessings they have received.

And aren't we all damaged goods after all? I say we are. What do you have branded on your body? Some of those stigmas are more visible than others. We are all in this together. I feel the power and strength that comes through prayer. Prayer from friends, but mostly family. I feel the love of a mother and father who have given and sacrificed all they have for me, and all their children. I feel the love and concern that comes from dedicated, loving children. And a spouse who must go through those alone times as well, wondering what the future has in store.

But mostly I feel the love from a Father and Son, whose birth we celebrate. It is my prayer that at this Christmas time I may focus on all I have been blessed with, all I can do, my new normal.


  1. I love this post. My daughter was diagnosed with Rett Syndrome in October, a neurodevelopmental disorder. She developed normally until about 2 years old and has now digressed and will stay that way (she's almost three). She used to talk. she doesn't anymore - never will. She may lose her ability to walk. I have to feed her, dress her, change her, etc., and will forever. It's been an interesting thing to switch the goals and dreams we had for her and what we envisioned her life to be. Some might say she is branded, but I believe she is such a blessing to everyone she comes in contact with. They all smile and slow down and stop thinking about themselves so much. It's been really incredible to watch. Hard yes, but incredible.

  2. Shar, if it's any comfort you don't look damaged to me! You fake me out all the time :) All I ever see is a strong, beautiful, kind-hearted mama who never fails to have something positive to say. I'm real sorry that behind the scenes there's so much more going on...but you'll always be someone who survived trek to me!

  3. Shar, as I've gotten older and things have changed I've learned that my happiness is dependent not on what is happening to me but on my expectations of what will happen to me. I eventually learned to not expect to have control over my circumstances just to have control over what I do with those circumstances. Small point but one you'll understand, you know how important running and racing was to me. I fully expected to be able to continue that the rest of my life, albeit with dimished results. I expected that as I retired I'd be able to spend time training and participating in a community that I loved. The heart attack 9 years ago put an end to that. Between the damage the heart attack did and the damage the repair did, my running was left severely damaged. I fought the obvious for nearly 6 years, then events made me realize that my expectations were not only unrealistic but very damaging. I changed my expectations and now I love running again (if you can call it that). I love it because I get outdoors, I love it because it helps me stay healthy, I love it because it helps me stay connected to life long friends. Don't get me wrong it irritates me when an old lady goes past me with her walker clanking on the pavement, but it's mostly funny now.

    However you account for your loss of control and changing circumstances (eternal test, or just stuff happening)it doesn't matter your expectations are still within your control.

    this may be naive but it sounds to me like your limitations may be driving some special bonding between you and your family, bonding that wouldn't take place if you were fully independent.

    Remember how your legs hurt towards the end of a marathon? You didn't get to the finish line by saying oh d... my legs hurt I sure wish they didn't. You got there by saying oh d... my legs hurt I'd better start using my arms more.