Lorrie, I don't bring swimming gear when I'm climbing Everest and I don't take a parka to the Congo. I have however waddled around like I said just this year. Now I keep two extra rolls in the bathroom cupboard.
I haven't packed enthusiasm (the genuine, full kind I used to know) since 7:32 EST on July 31. 2008 just 2 1/2 hours before our 38th anniversary and then went back into the room with my wife officially knowing what our future was.
The answer to the riddle is the glass half empty or half full is that it is neither because it is both and neither can exist without the other.
She's not this now we both agree because I know her like my own hand. She's what she was when she sailed her own ship. My job is to have my own, full life and if I end up addled in some NH muttering to my neighbour that "she's in my pocket you know"; it really doesn't matter that they don't know what I mean.
"Have you got something in your pocketsss?" the nurse will ask me in that completely false sympathy voice honed to a keen edge. I'll just smile. One more meatloaf and pees dinner before that slug on a snail catches up with me.
I'll tell you a secret for afterwards Lorrie. Enthusiasm takes courage afterwards. That's how it will feel but that's false. Courage will move the body enthusiastically but not the soul. It will take love. The reopening of the hurt soul. Everything else is brochures and furniture.
I know I speak mostly from the point of view of surviving this disease as a whole person. In my mind it's both a place we all will arrive at and it's the only thing about the disease we can fight and not just survive. I also know some of us have no connection to such thinking now as others have a great need of finding some path out or an additonal rock to stand on.
Speaking of rocks, I'm thinking of printing out my manifesto and hanging it on a wall:
"You're an idiot in an insane asylum on a rock floating through space and if you don't get eaten by something you're going to die anyway. Try not to take it completely seriously. Chin up. There's a good fellow. See? I told you you're an idiot."
I just finished watching my DS being interviewed on a local television station about the effects of AD on family. It was promoting the local AD society annual fundraising "Walk for Memories" happening on the weekend. I was pleased that the interviewer picked up on the fact that my son is fairly young "AD is not just an old person's disease" and also that my DS took the opportunity to emphasize the aspects of the disease that are not memory - depression, isolation, loss of physical abilities and the stigma that the diagnosis creates for the sufferer and their families. My DH, who is never up at this time in the morning, got up to go to the bathroom. I asked him if he would like to watch and he did - I know he was very touched by what our DS had to say. I am so proud of our son. I know that to do this took a lot out of him. And I know he wishes he could do more, but he does what he can.
bqd, I am so warmed by this action from your son. What a sweetie pie. And I love that he stressed that AZ is not just forgetting. Thanks so much for this lovely news.
Thank you for your kind comments, Coco and Vickie. I'll make sure that he knows that others appreciate what he is trying to do in raising awareness for this disease.
I agree with Coco and Vickie that you should be very proud of your son. It is so important for people to understand as much as possible about this dreaded disease. Good for him!!