This is an opinion column from Mike Oliver, who was diagnosed with the fatal Lewy body dementia more than two years ago.
Acceptance of a fatal disease diagnosis is the first step.
Listen up brain. I’m talking to you.
That doesn’t mean you are not angry
about it. That doesn’t mean you are not sad about it. And that doesn’t mean accepting
everything the doctor says. Do research.. Ask questions. I’m not saying give up
hope – for a cure, for a milder case, for, yes, even a miracle.
But be realistic.
To avoid despair – and that’s a weighty word
for giving up – you need to come clean with yourself primarily, and, then,
others as you begin to become comfortable talking about it.
I knew a person with a fatal cancer diagnosis who refused to talk about her cancer. Her friends and children eventually knew she was sick but had little to no time to prepare for her death. When she died her school-age children did not know death was even a possibility. Her death was a hard blow to handle without preparation, a sucker punch with long lasting effects.
Talking about my fatal disease, even
joking
about it has been my way of making this horrible thing bearable. I also
talk to my brain.
Now this might sound silly but try it: Stand in front of a mirror and say “I know I have Lewy body dementia (or Alzheimer’s, or Parkinson’s, or cancer, or whatever it is).
“I know you may kill me before I
want to die,” I say to my reflection, talking to my brain. “But I will fight
you. I will not go gently — until I can do that on my terms.”
Still standing before the mirror I say: “Lewy, I will resist your memory damaging brain attack. I hereby give you, my brain, permission to summon whatever resources you have to fight back to slow the proteins down.
“Step up brain. You are me. I am you. Together we can beat this.”
I received an email from a reader that
illustrates some of what I am talking. I am printing the email here in whole.
Anne Pinkston in Nashville brought a
tear to my eyes with this email.
—–Original
Message—–
From: Anne Pinkston
Sent: Thursday,
February 14, 2019 10:32 PM
To: Mike Oliver
<MOliver@al.com>
Subject: Thanks
for your articles
Dear Mike,
I am guessing
you receive more emails than you can read, but still I felt compelled to write.
I am Anne
Pinkston in Nashville.
My husband Ken,
age 76, too has been diagnosed with Lewy Body Dementia with Parkinsonism. Several months ago, a friend in Birmingham
told me about your articles, through which you are chronicling your
journey. That night, I sat up for hours
because I could not stop reading your articles.
At that time,
Ken knew very little about his “diagnosis” and had not been ready to embrace
the diagnosis. I began to read your
articles to him at breakfast. That is
how I have exposed him to everything “Lewy”.
Now, he can sometimes even make jokes.
Your articles
have been a great inspiration for me. I
love your sense of humor and your determination to not be defeated. I relate to your wife, Catherine.
Tonight,
I read your article about driving.
My husband had to give up driving in September, and should have
sooner. He has not adjusted yet. I will read your article to him in the
morning, with the hope that it will help him and will make him smile.
I believe you
and my hubby will both “beat the odds” and live longer and better than
expectancy for Lewy Body, so don’t give up.
Thank you so
much for your articles, your humor and your amazing outlook on life. You, Catherine, and your girls are to be
admired. I am guessing you have
inspired many, many people, as you have inspired me.
So your friends
pledge $$$’s if you dunk. Well, I pledge
$500 to your July Mike Madness B-ball Tournament, whether you dunk or not. But, I think you and Dr. J’ Erving could both do it! Is there a link for 2019 Mike Madness
pledges.
I have been
including you and your family in my prayers.
Keep that
“vinyl countdown” going!
Anne Pinkston
Thanks Anne for making my day!
– Mike
Post Script: Keep your eye on myvinylcountdown.com for information about the charity basketball tournament. We are in early planning stages right now. But I have a feeling this year’s Mike’s Madness is going to be a doozy.
AL.com version with reader comments.
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