Wednesday, July 21, 2010

Be a Memory

I am a Tar Heel. Class of 1998.

In the fall of my senior year, iconic basketball coach, Dean Smith, retired. He was a man I much admired. Not only was he beyond compare when it came to coaching basketball in a state where basketball is close to religion, but 96.6% of his players graduated and he fought for integration in a time and place when it wasn't the popular thing to do, but it was the right thing to do.

Recent days have revealed that Coach Smith, 80 years old now, is battling a memory disorder. As a family of Tar Heels, we are, of course, following the story, reading a variety of articles and watching the comments and posts coming in through Facebook.

And it's beginning to bother me. A lot.

Let me point out that Coach Smith has not passed on. He is still alive. He is still living his life. That was quite clear in the statement put out by his family. Yes, his life is amended. Yes, he isn't doing all that he was doing a year ago, five years ago, 10 years ago. But, yes, he is doing. Yes, he is LIVING.

The tone of so many of these articles has been one of loss, almost obituary-like. Like somehow he is somewhat less than as a result of a medical diagnosis. Perhaps it's the fascination of watching a great one fall, not wanting to see a hero weakened. But I think some of it has to do with being uncomfortable. And memory disorders do that to those not suffering. Make them uncomfortable.

I watched my grandmother suffer from a form of dementia. There is nothing more painful than not being recognized by a woman you love dearly and who has loved you. The blank stare. The empty smile. The subtle twitch of an eyebrow as perhaps somewhere she recognizes that she should know this young woman before her, but honestly and truly does not. Perhaps more painful was the struggle her husband and children encountered as they bore the brunt of the paranoia, the anger, the yelling and screaming, all born from a terrifying frustration, I'm sure, as you realize your own mind has failed you and you can do nothing to stop it.

I watched her at my grandfather's funeral. The funeral mass that was said in the chapel of her nursing home so that she could attend. Even though no one had told her yet that her husband had died. Because she hadn't noticed yet. And would she remember if told? She sat in a wheelchair in the back. She listened. She smiled politely. This person they spoke of seemed like a very nice man. He had a lovely family gathered around him to say goodbye. Perhaps she even thought we looked like the kind of family she'd like to have. I hope so. Because it was the family she did have. And our tears flowed that day, not only for the man we had lost but for the woman we seemed to have already lost to this horrible, humiliating disease.

When she did pass, not even a year after my grandfather, we all sighed and said it was for the best. We comforted ourselves by saying we'd said goodbye years ago since she was certainly not the tour-de-force woman we remembered. But she was still gone. And it still hurt. I can't help but wonder what those dementia years were like inside her mind. How hard that must have been for her. How she must have said goodbye to a piece of herself each and every day while fighting so damn hard to hold on to it.

Just this past weekend, on our wedding anniversary, a cousin of mine wished us well and pointed out a hilarious moment from our reception where he somehow ended up dancing with my grandmother to Marvin Gaye's "Let's Get it On." What a memory that is. A memory that I'm sure my grandmother would not have been able to call up in those last years, but would certainly have laughed at and appreciated the woman who danced so ridiculously with her grown grandson.

So I am bothered. I am bothered because Coach Smith has good days ahead of him. I am bothered because he has a family who will refuse to say goodbye until the time of parting. I am bothered because it is not a weakness, it is a disease. I am bothered because those who say goodbye to this man and his legacy now only serve to isolate him, and isolated is a scary way to live, regardless of whether you remember it or not.

Tar Heel nation and beyond, if you are bothered, uncomfortable, saddened or otherwise affected by this announcement, do something. Be Coach's memory. Take the lessons he imparted on the court to his players, take the model he was in the community and become a memory for someone else. Fight for research into these disorders. Visit that family member and share stories of the past.

Memories don't need to live inside your own mind to be alive.

7 comments:

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Melissa C. said...

Beautiful, touching post! It brought tears to my eyes as I thought (again and again) of all of the memories in our family and how scared I am that things will get lost. I try so hard to listen to and memorize the stories I hear from grandparents, my Dad, my aunts and uncles, and yet I can't remember every detail...I only hope others in the family are listening, too. Thank you for the important reminder of how to carry on the memory of those we love.

Melissa C. said...

P.S. That was my delete...sorry!

Anonymous said...

i understand how you feel about the coach and his dementia.

when you are dealing on a daily basis with someone that has dementia, it is much different. dementia effects everone who has it differently. the only commonality is the progression.

everybody who deals with a loved one that has dementia is also different. we all have different relationships with people that have dementia. these relationships are as different as being lovers, spouses, siblings or children of people with dementia. as such, while we recognize that all our reactions to dementia are different, they are all NORMAL!

some people have to say goodbye early. some of us have direct medical decision-making responsibility for our loved ones with dementia. however we view that person, our views are NORMAL!

we all grieve in different ways. it is NORMAL to grieve the loss of intelligence and impetus in a once vibrant human being. it doesn't DIMINISH who they were, it just acknowledeges what is obviously happening now and how sad it is.

this will be happening to many more people in the future. yes. do support research for this disease. do visit your loved ones that have dementia. do share your memories with them.

but, do not feel ABNORMAL if you can't do any of these things, because you are who you are and this is how it has effected you.

just like everything else in life.

as you may have guessed, i am the adult child and power of medical attorney for my mother. she has alzheimer's dementia and is paranoid, delusional, and depressed. i am trying to keep myself together after a visit when she forgot who i was, trying to keep myself together after listening to the answering machine with her voice speaking to me at all hours of the day when i am asleep or not home. calls that do not make sense to me. calls of paranoia, calls of fear.

pardon me if i mourn the intelligent woman that was my mother once and forgive me if my visits with her are sometimes perfunctory and short. i am just trying to stay sane while thinking of what my mom must be going through.

e

Meredith said...

Amazing post, sis! I remember so much the happiness and the pain that we experienced with Grandma. The happiness of the funny memories and great summers and the sadness of her being unable to remember who we were and being gone before John and I got married.

I feel for the Smith family. They have a lot to deal with, but knowing that they have Tar Heel Nation behind them to support should bring resolve in their fight!

Love you so much and your post was beautiful.

Jamie Willow said...

dementia sucks. for everyone...but especially for the one going through it I think.

my dad is going thru this. it is hard to see...and I am not close by to see the daily progression...it seems like it is leaps and bounds when I don't see him for long periods of time. it is very different for my mom who is there every day.

and even if they don't remember you, they need your visits and your hugs and to not be isolated, like you said.

Mrs. Kochel said...

Hi Monica,
It's Marcia from Stroller Strides. We were at Carolina at the same time only I was in grad school. Funny that we never put that together. I remember those last games of Dean Smith, too. Maybe we sat near each other at a game!
I'm back to work starting tomorrow but will be at book club in August and will keep reading your blog.
--Marcia