Activism

I had a dream last night that I spent the entire last mile of the marathon crying my eyes out. People kept asking what was wrong and all I could say, like a little kid, was that I missed my mommy. I woke up and it was September 21st - Alzheimer's Action Day.

I've spent the morning wondering if what I'm doing here is actually activism in the traditional sense of the word. Honestly, some days, when I feel obligated to say something activist-like that inspires people to some kind of action, I can't help but think what I'm doing is more like a warped kind of mourning that just happens to have positive side effects.

My fundraising letter included a short paragraph about the public health impact of the disease and the economic, social, and even political effects of Alzheimer's if allowed to continue unchecked. But the majority of my message was mostly about my family and how hurt we've been by the withdrawal of Mom from our midst over the past few years. I've limited my fundraising efforts to the people I know and I haven't done anything to raise awareness of the disease or its effects to the greater population. I haven't volunteered my time (or what's left of it) to my local chapter, I haven't participated in any fundraising events, and I haven't told people I don't want to know (i.e. coworkers - only one is on my Facebook page and she rocks) anything about what's going on in my family. Selfishly, I guess I just haven't wanted people to know because there are times I really just don't want to talk about it...and isn't that what an activist is supposed to do? I don't want Mom's condition to be something people ask about just to make small talk or to show they remember something personal about me, but at the same time, I feel like I'm letting "the cause" down if I'm not constantly out there spreading awareness every chance I get...and personal stories of loss are the most effective tools an activist has at their disposal. After all, as Joseph Stalin said, "the death of one man is a tragedy, the death of millions is a statistic."

As I've said before, accepting my invitation to Team Run2Remember was like a partial coming-out for me - outside of the family and a few friends, even the people who knew what was happening to my mother really had no idea how I felt about it until I started the blog and wrote that letter. But I don't want to spend all my time remembering and letting this define me, or I'll be a constant tear-stained exhausted mess like I've been this morning. Sometimes there's nothing I'd like more than to forget, if just for a little while. And that's when the anonymity of this quiet, personal advocacy has been a blessing.

Maybe one of these days I'll be strong enough to stand up in front of a group of people and tell them my story and inspire them to action, or march on the Capitol with picket signs...but I'm not there yet. I just don't have the words. So instead, my request to everyone who reads this is to find the words for me - call your mothers, talk about a favorite shared memory, and tell them how much you love them.

That's my kind of activism.

Gratitude

If I had a dollar for every blog with a version of the "Sorry I haven't written anything in such a long time" post as the most recent entry, I'd be able to meet my fundraising goal right here and now. I told myself that I wasn't going to do that here, ever. So much for that. I started out strong with seven posts in a row, then let a week go by without saying a thing.

Here's why: In the past, my blogs were written pretty much for me and a handful of friends who occasionally stumbled their way onto my site during a lull in the workday. So, despite the suspicion voiced in my first post that people might actually read this one, I've still been surprised at all the people who've not only clicked on the links I've thrown out there, but actually read what I had to write. The writer in me is, if not ecstatic, then quietly satisfied at this broad circulation. My messages, such as they are, are getting out. I don't have any delusions that this is going to have some kind of positive ripple effect on humanity as a whole, but I don't think it's necessarily a bad thing to give people a glimpse of what it feels like to go through something like this. After all, as my page constantly reminds us, every 69 seconds, someone develops Alzheimer's. Odds are...

But the person who, for ten years, had no idea how to respond to what was happening to my mother, was too afraid to ask questions, and then, confronted with the facts, preferred to keep her feelings mostly to herself, her family, and a select few friends? That person is totally fucking terrified. The urge to take all of this and bury it in the deepest possible digital hell under the most secure lock and key I can afford (not much) still reigns supreme, and I have to beat it into submission every time I hit "publish" on something that's made me cry to write. I still kind of shrivel up at the thought of some of the people in the office ever finding this, like the judgmental, two-faced old witch who tried to get me in trouble for wearing running shoes instead of heels to the office because of my plantar's fasciitis (I had a doctor's note for that). But I continue to put the link out there publicly in the hopes that everyone who's reading this is doing it for a good reason.

And then, I don't really know what my family is thinking, either. I don't want to be a David Sedaris; I want them to feel comfortable talking to me without having to preface their feelings with a, "Don't you DARE go writing about this." It's a deeply personal situation and this is all personal writing. I don't know what Max, Alex, Hanna, and Dad are sharing with others and keeping to themselves. Aside from what they've said, I don't want to speculate on how any of them feel. I want them to read this if it helps them understand things in any way, or if it helps inspire them to let their feelings out themselves, but I really, REALLY don't want to make them uncomfortable and I'm kind of terrified that's what it's going to do. Everyone who's read my fundraising page said it's made them cry; as a result, I'm not so sure I want my family to read it. If I ever go deleting anything, it's because a family member has asked me to...but I carved out a pretty big piece of my heart to write that one, and I don't think I can go through trying to write that again.

Readership aside, there's a lot of writing and development that goes on behind the scenes of every post. I have a list of ideas for future entries that I keep with me at all times (stored safely in my iPhone) and while I'm open to suggestions if anyone wants to ask me any questions, it seems that by the time I hit publish, the post is as different from the original idea as a newborn baby is from an implanted embryo. Even after I've published things, the perfectionist in me still finds things I want to go back and clarify, re-write, or omit altogether. I change my metaphors and my wording like crazy because I don't want to repeat myself, get comfortable with my subject matter, or spout clichés about what it means to live with dementia (unless I'm ripping them to pieces) - ever. That last post, believe it or not, actually started out as a rant against everyone who hinted at (without actually coming out and SAYING) that 4:30 was an unrealistic NYC Marathon goal. I had it about 7/8 of the way finished, saved it...and then couldn't pick up the pieces and keep writing when I revisited it. So after a few days of frustration with the ol' blogstipation issue, that's what came out. It was like I was expecting a boy and instead gave birth to an alligator.

The only criteria (aside from not totally butchering the English language) I have when I begin a post is that I have to be honest...because otherwise, what's the point of writing and why on earth would I expect you to read? Unfortunately, this honesty is sometimes at odds with the cause, as I realized yesterday when I was rereading yesterday's post. Maybe saying things like, "Sometimes a cure for dementia feels like someone ELSE's goddamn cause, because ours is already lost" or (on my donation page), "If I were a more religious person, I could fill that emptiness with my faith in God and my belief he has a plan for everyone...but I'm not" aren't great things to say when I haven't even raised my first $1000 yet. (And maybe I shouldn't swear so much.) I really wish I could fake sunshine and rainbows and hope and tell you how great everything is...but then you'd totally lose faith with me.

If you take nothing else away from this post, know this - the fact that anyone who has known and loved my mother is able to get up out of bed and go about their daily lives is a HUGE testament to hope and strength and love and everything great about this cause. Everyone who tells me they're touched by what I've written, every donation I've received, even the pepper spray that a coworker brought me after reading my Watchdogs post - all of those things remind me exactly why I'm doing this and who I'm doing this for. And guess who's been running stronger than ever lately?

You people are awesome. Thank you from the bottom of my heart.