It's Lonely In Here.......

As my CBGD progresses, my body feels more like a shell than part of me. A shell in which I am trapped. The part of me that is my conscious self seems to be shrinking inside it, like the Easter egg that was not found. Eventually the inside hardens until, when shaken, the egg just rattles with the death inside.

It is so, so lonely in here.

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Left-handed Compliment...

As I continue to lose the use of my right hand I am forced to rely on my left hand to do tasks it has never learned to do.

I was making a purchase at a department store the other day and took my item to the cashier to check out. I dread these little encounters because they inevitably require two hands. I pulled out my wallet, that I keep in my left rear pants pocket, opened it, and with a bit of fumbling managed to remove my debit card. I looked down at the credit card swiper. The slot to insert the card was on the right side, requiring me to hold the card in my left hand in goose neck fashion to swipe my card.

I was successful on my third attempt prompting the cashier to say, "Oh, I'm left-handed too. It's good to be among right minded people," she giggled.

"I've only recently become left-handed. An illness," I said.

"Then you were meant to be left-handed all along," she ventured.


Maybe she was right.

Personally I think she sleeps in a pyramid with scented candles burning and whale sounds coming from her mood-a-rama.

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How Lucky Am I?

A couple of days ago, just as I walked from my car to my backdoor, my Blackberry buzzed indicating an email. I petted the dog, wiped my shoes on the mat and entered the kitchen. Then I checked the email.

It was a notification that someone had posted an "anonymous" comment to one of my blog posts.

It read:

Thank you for your blog. Wish I had found it sooner. My wife has CBD. She is 36yrs old and we have a 4 yr old son. Although she had some symptoms for over 2 yrs she was just diagnosed last june. The disease has been very progressive and she now lies in a hospital bed unable to speak, walk, laugh, smile, or give us a kiss. Cant wait to bring her home but she continues with a fever.
I wish she would have had the strength to speak about her disease the way you are. It really depressed her and she wouldnt talk much about things we needed to discuss. Now i feel i should have pushed harder for her to speak to me about things because now its too late.
So thank you for sharing your experience with everyone and being so strong.

It truly took my breath away. While I am bitter to be struggling with this disease during what should be my professional peak, the timing could have been so much worse. My children are self-sufficient (usually) and I still have time to tie-up my loose ends.


This anonymous comment shook me from a place I should not visit very often. A lonely place where the only thing keeping me alive is a suicide clause on a life insurance policy.