Friday, February 28, 2014

Benign neglect

I haven't written in forever. Forgive me, I've been trying to restart my life. I've discovered, as I suppose every woman or man who has taken time out to care for self, parent or children, it ain't as easy as it should be or as we'd like it to be. In the midst of all that, I've run into a minor snag with my health. It really is a smallish thing but it's a thing nonetheless and that caused me to think about how long I've gone without even as I've been ensuring that Mummy never did. 

It is all too easy to neglect yourself when you're a caregiver. Indeed, it's de rigueur to do just that. The trouble is, unless you are mindful of the need to take time out for self-care, or you have family and friends reminding you to do so, trouble will come to you in the long run.

Benign neglect is when you don't prioritize yourself and your health needs. Benign neglect is when others see you doing this and never ask, "Hey, if I offer to stay with your mother for a day, is there something you can do to take care of you?". Benign neglect is when people sitting right there in the front row of the theatre see the actor coming right to the edge of the stage and never say, "Watch out!" The neglect is 'benign' because there's no malicious intent (unless of course there IS under which circumstance it's a whole other thing), but it's still neglect, and benign though it may be, it still has consequences. 

Neglect is an ugly word. It has ugly overtones. It suggests, all by itself, that there's a willfulness, a wanting to cause harm, which is why I add the 'benign'. But as I've said often enough in the past, that you did not mean to kill me renders me no less dead. That you did not mean to neglect me, renders me no less neglected; renders the consequences no less real.

All of this, makes Seth Rogen's presentation to Congress yesterday all the more disappointing. It's not the Seth Rogen part, but the absent Senators part that's disappointing. I certainly appreciate Rogen's efforts and his sincerity. I appreciate the weight and focus that celebrity brings. What I don't appreciate is the empty seats on the other side of the table. What I don't appreciate is the unwillingness to make Alzheimer's Disease a real issue and a priority for this nation. I'm inclined to say that I don't get it, but unfortunately, I do get it. Unless we can find a way to 'monetize' congressional action, there's no drive for them to show up. Doesn't Pfizer have a product to sell? Oh then I guess no value here huh? /cynicism off/

Profit or no, there are real people, people with real lives experiencing real loss and the destruction of their carefully constructed financial and emotional lives, dealing with this thing day in, day out. We deserve your attention. We ain't asking for a buck, we're asking you to acknowledge that something really foul and evil is afoot and you, oh great congress, have a responsibility to deal. Or at least listen. That Senators paid with my and my mother's tax dollars no less, couldn't give a piss, is too much to bear.  

Hey, I get that our congressional representatives have many terribly important things to do. I get that. So do I. I gotta take supplies to Mummy's assisted living facility and I gotta get my blood tests done for my own medical travails. Trouble is, the only people harmed when I don't do what I should, are me and Mummy. When congress fails to show up, well, all of us suffer and their neglect ain't quite so benign. 

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