Monday, November 1, 2010


My younger brother was in town from San Diego last week and on a cool drizzly day we decided to take in an afternoon movie. I checked the local multi-plex and picked the movie, "Hereafter." I assumed with the names Matt Damon, Clint Eastwood, and Steven Spielberg associated with a movie that had a considerable amount of action in the preview trailer, I was safe. I was wrong!

You see, I've reached a point where crying about MY condition has been locked in a box and shoved to the back of my closet. Way back! I fear I also locked away a bit of my sense of humor, my ability to appreciate simple wonders, and a bunch of my creativity. However, when presented with a situation that others might find sad, I might find deeply despairing. Debilitatingly so.

Considering my weakened ability to discern sad fiction from mournful reality, and the fact that I am in the throes of an "illness" that will kill me, why the hell would I pick a movie called "Hereafter." Believe it or not I find that morbidly hilarious!

The movie dealt with the existence of an afterlife and loved ones who have "passed on" watching over us. Luckily I had buttered popcorn necessitating extra napkins. I'm not sure if it was as much of a tear-jerker to my brother because the "man pact" requires that we not discuss such things.

It is tough to hide despair and still show joy.



  1. I think the very best time to feel/show joy is when we despair. Yeah, that's a morbid hilarity. And I think you might as well laugh about it. And cry about it.
    I look forward to your next post.

  2. my sister was diagnosed in august with cbgd thank you for writing about your

  3. CW, since you are "in the throes of an illness that will kill you", I'd see this time as a PERFECT opportunity to put a stamp on your 'man pact', popcorn or not, and talk about your HEREAFTER! You never seem to look that far ahead. Where do you see yourself in the HEREAFTER?? I'd love to know your views.

  4. I'd be interested to know your views on that as well - when you're in the mood to write about it. Actually, I benefit from hearing your views on just about everything.

  5. Hello. My boyfriend was diagnosed with this disease 2 yrs ago. I wish he had an outlet to express what he is going through, like you do. He also can no longer write, but never has really learned to much about computers before being diagnosed-& I'm thinking this is not the time for him to be trying to master the computer. Wow, your comment "It is tough to hide despair & still show joy" really stuck a chord with me. I go out into the world every day, & everyone I see is just going about their lives. I wonder, how can everyone & everything just go on as usual while I am watching someone I love die too early?

  6. Hi Bob,, haven't seen the movie yet but intend to. Your last statement hard to show joy when you feel despair, is just so frickin true. You see so many around you that are so joyful about life, and i don't want to be debbie downer, so i fake it lots of the time, but occasionally I'll find myself really enjoying a day or a conversation, and a real laugh comes out. Not so much for Kel, he has been down a lot lately, he hates it if I try to help him do something, buttoning a shirt, cutting his food, and can get grumpy so I back u feel that way, that u don't want your wife to help u? Trying to get Kel to open up to me and tell me what he is thinkng or feeling is near impossible but i see the sadness in his eyes. I had his whole family to the house today and tried to get him to engage more, to interact more, and he just is always hanging back, like on the outside looking in, and seems angry at me for trying to include him. I don't know it was just a tough couple of days and i am pooped, and tomorrow is monday and the work week begins again. Ugh.
    Anymore physical symptoms for you? do you have trouble with steps? just curious.
    take care, and try to find joy in the holidays, i remember Superwoman's beautiful table setting from last thanksgiving. There are many things we can still be grateful for.
    blessings, karla

  7. I just came across your blog following the latest CBGD Yahoo group newsletter. My Mom is 3 years younger than you, and in the throes of CBD. I'm thrilled that you're decline has been as slow as it has, as my Mom (diagnosed a year before you but experiencing symptoms since 2005) is completely incapacitated and needs 24 hour care. I'm catching up on your blogs, but look forward to reading more about you and your experience.

  8. Fay,
    Sorry I've been so long in acknowledging your comments. Either I'm moving slower or the world is moving faster......probably both.

    I know what you meant and I appreciate it.

    I made a conscious decision to confine my blog to the physical and mental states and exclude the spiritual. The very fact that I choose to not write about my spirtuality should not infer that I am not spiritual....on the contrary.

    I do not believe my moral compass is located in my spirituality. 'nuff said.

  9. Lynn,
    I am so sorry. The road that you both will travel, while parallel, need not be the same. HE will fall prey to the physical aspects of CBGD. You will be scarred by the fallout but will remain whole. Remember to take care of yourself and smile when you can, for "this too shall pass."

    Your comments always remind me I'm not alone. My next post will answer many of your questions about reluctance to socialize.

    I'm sorry about your Mom. CBGD is truly not a condition for sissies. Tell her I'm thinking of her and give a smile from me.


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