BrainStorms – Ed Lunnon’s Blog: Raising awareness about corticalbasal degeneration, a rare neurological illness


(c) 2014 Edward C Lunnon
8 years 2 months ill …
Physical: Advantage CBD / Mental: Deuce

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Monday 24 November 2014

My Blackberry reminded me this morning that today would have been Sherri Danley’s 57th birthday. She was at school with me in Sulphur, Oklahoma and died from cancer a few years ago.

My iPad reminded me that Debbie Whitley was not feeling too well. I like to call Debbie my sister-in-law because she is married to Blake Whitley, the eldest of my five American Whitley “brothers” that I lived with at the Lake of the Arbuckles in Sulphur. Debbie is bravely fighting cancer.

My desktop reminded me that my blogsite surpassed the 185 000 hit readership last night. I am humbled. It was five years ago that I started blogging – in October 2009 – three years into my journey with CBD. I started blogging to stay in touch with my family and friends, and my initial emails and the new Facebook had become inadequate for my needs. My first two blogs were “Three Years On” … and “Oklahoma is OK and so much more”. Little did I know then what I had started!

My laptop reminded me that Kevin and Carol Whitley had just done a twelve hour trip from the east coast of the USA to Oklahoma to attend a family wedding and a family reunion. I was sad that I was not there and I must admit that I shed a few tears (something that I do more and more of these days) Yes, everybody hurts, sometimes! I needed to message Blake and Kevin and Colin and nowadays its instantaneous on Facebook – you just wait for that little green dot to light up.

Lance du Plessis, my AlgoaFM radio host, reminded me that Freddie Mercury passed away 21 years ago today. He played “Live Forever”!

My brain (albeit diseased) reminded me that that was not possible! But, my mind did take me back forty years to Oklahoma 1975. I remembered the Whitleys, the Colberts, the Griffens, the Seips, Sulpur and Sulphur High School and all my Sulphur school friends. I remembered the USA, the Star spangled banner, the day i was made an honorary citizen of Oklahoma. I remembered the four times that I have returned to the States, and the journey that I have undertaken since then.

I am reminded by that most sophisticated device of all – my brain – that I am so blessed. I am reminded that despite the physical disabilities that i am beginning to encounter, and the negativity that I am having to fight, it’s been a good life for it all!

I am reminded that it’s my past that will carry me into my future and it’s my present that I have to learn to manage.

I am reminded … of hiking and skiing in Aspen Colorado, and John Denver and Poems, Prayers and Promises!

“I’ve been lately thinking about my life’s time, all the things I’ve done and how it’s been.
And I can’t help believing in my own mind, I know I’m gonna hate to see it end.
I’ve seen a lot of sunshine, slept out in the rain, spent a night or two all on my own.
I’ve known my lady’s pleasures, had myself some friends, spent a time or two in my own home.

I have to say it now, it’s been good life all in all, it’s really fine to have a chance to hang around.
and lie there by the fire and watch the evening tire
while all my friends and my old lady sit and pass a pipe around.
And talk of poems and prayers and promises and things that we believe in.
How sweet it is to love someone, how right it is to care.
How long it’s been since yesterday, what about tomorrow
and what about our dreams and all the memories we share?

Days they pass so quickly now, the nights are seldom long.
Time around me whispers when it’s cold.
The changes somehow frightens me, still I have to smile. It turns me on to think of growing old.
For though my life’s been good to me there’s still so much to do.
So many things my mind has never known.
I’d like to raise a family, I’d like to sail away and dance across the mountains on the moon.

I have to say it now, it’s been good life all in all, it’s really fine to have a chance to hang around.
and lie there by the fire and watch the evening tire
while all my friends and my old lady sit and pass a pipe around.
And talk of poems and prayers and promises and things that we believe in.
How sweet it is to love someone, how right it is to care.
How long it’s been since yesterday, what about tomorrow
and what about our dreams and all the memories we share?”

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One comment on “BrainStorms – Ed Lunnon’s Blog: Raising awareness about corticalbasal degeneration, a rare neurological illness

  1. Pingback: What Port Elizabeth Blogs say on 24 November 2014

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