Saturday, July 30, 2011

Friday, July 29, 2011


Today, at the recommendation of my dear friend Jami, who works for the KU Alzheimer's & Memory Center and read over my fundraising letter for me, I went sniffing around for some statistics to add.

What I found has me totally pissed off. I tend to focus mostly on the devastating social effects of the disease, but the financial effects are staggering in their magnitude. Alzheimer's is costing our government $183 billion this year alone. That's $11 billion more than 2010, four times the national inflation rate. With new Americans developing symptoms every 69 seconds, by the time I'm 70, this amount will have ballooned to $1.1 trillion. After all, Alzheimer's and related dementias are the 6th-ranked killer of Americans today, and it's the ONLY one without a cure, hope of prevention, or way of decelerating the process.

(Other diseases rounding out that top ten have mortality rates that actually fell between 2000-2008, including heart disease, stroke, prostate/breast cancer, and HIV. Alzheimer's deaths, in contrast, rose 66%.)

Now, this isn't the space for discussing/debating politics, at least as long as BOTH sides are ignoring the issue. But seriously - with all this talk about national spending and expenses and debt ceilings and all this goddamn bickering in Washington, it kind of makes you wonder why the hell finding a cure isn't in the national interest.

I mean, for Christ's sake, REAGAN had Alzheimer's.

So here's my solution. Every time a politician or talking head goes out and throws the name Reagan around in any kind of political fiscal discussion, they should be required to donate $10 to Alzheimer's research. Stop blathering already, do some good, and put your money where your rapidly flapping mouth is.

Thursday, July 28, 2011

Of Musicians and Marathoners

In the process of brainstorming for my fundraising letter, I had a thought.

When I played in my first violin recital, I was four years old. Despite a healthy desire to learn to play REAL music, and the beginner's love to practice, I could barely draw the bow across the strings without making a sound like a creature dragged straight from hell. Despite Mom and Dad's enthusiasm for my new undertaking, that can't have been entirely pleasant for them, but there they were, ushering me into the group of other beginners and taking their seats.

When your child can only play the rhythm for Mississippi Stop-Stop on the A string while the piano tinkles out the melody, a violin recital can be a long, drawn-out affair. It's a LOT of time watching other people's kids and clapping politely, followed by three or four minutes where she takes the stage to play the same screechy notes you flinched your way through at home. You cheer wildly, taking all sorts of photos. Then...more watching other people's kids. More polite clapping. You think, "Wow, she could actually be sort of good if she only practiced more." Then it's over and she comes to you and asks how she did, and you ask her how she feels, take more pictures, and tell her she was wonderful.

Dad was there for those early violin recitals, and he'll be in the crowds lining the streets of New York City when I run my second marathon. And really, after raising a violinist, the experience probably won't be all that foreign to him. After months and months of hearing about not-so-pretty training runs, some at a pace that could barely be considered running, he'll take his place on the street around the time I'm being dropped off at the starting line. It'll be a long, drawn-out affair, even if I finish in my goal time - 4 hours and 15 minutes. He'll spent a lot of time watching other people run past, clapping politely. Then, for a few moments, I'll be in his line of sight and he'll be able to cheer for ME, take pictures/video, etc. Then...more watching other people. More polite clapping. He'll probably be thinking, "Wow, she isn't that bad, but she could be pretty good if she trained more."

Beyond that, I can't really project what'll happen. With any luck, he'll be able to see me more than once on the course. Brian will be out there too, and my friend Elizabeth, who's pursuing her master's degree at the School of Visual Arts in Manhattan. She's promised me signs. I've never had anyone make me race signs before, so I'm REALLY looking forward to that. And with her talent and sense of humor, I'm sure they'll be awesome.

And then, there will be food. Some of the best food in the world, in fact.

100 days to go!!!

Wednesday, July 27, 2011

Fundraising Letter - First Draft

I have a confession.

For someone who set her fundraising goal well above the minimum amount, I am absolutely terrible at asking people for money. In fact, there are only two people I've EVER felt comfortable asking, and one is sadly no longer in a position to have any to give.

So when I told myself I wasn't going to do any writing here until I finished my fundraising letter - pretty much the cornerstone of my effort - I had no idea it was going to take me THIS long. After all, I knew after last week that I wanted to center it around what I wrote on my fundraising page. That's probably the best piece of writing about this whole messy business that I've done to date, and if they pull out a checkbook instead of visiting my site, I want to make sure they've read that letter. But it was still difficult to get the expository stuff out without sounding like, well, a charity infomercial. I've been banishing images of homeless pets (to Sarah McLaughin's voice), starving Somalians, and harelipped children from my mind all afternoon. Argh.

For better or for worse, I wound up canning the PR stuff about the Alzheimer's Association and the statistics about the disease. I'm not trying to scare anyone into giving money - if they aren't partially intimidated to scared shitless about the deterioration of my mother's mind, they're probably not going to donate anyways. Even in the inevitable paragraph where I actually have to do the asking, I tried to put as much emphasis as possible on the personalized aspects of what's actually being lost here - not neurons or dollars spent on home health care providers or anything that can actually be quantified, but memories, both past AND future. And who can put a price on those?

Anyways, here's my first draft. Too weird? Based on what you've read of me, does this sound like me?

Dear ,

The news coming out of the Hodges household in recent years hasn’t exactly been the kind of stuff Christmas newsletters are made out of, so we stopped the presses quite awhile ago. If you haven’t seen me since Max and Jen’s wedding, you probably know me as a violinist, a writer, a golfer, mother to a huge furry dog Dad hates, a student, or some combination of those things – but probably not as a runner, let alone a marathoner.

With Mom’s mind steadily withdrawing and with Grandma Nancy’s recent passing, I’ve started doing a lot of things I never thought I’d do. A good portion of every day is devoted – whether I like it or not – to worrying about what’s going to happen to my family, especially Dad. I keep my phone on and with me at all times, in case someone needs me. I cry – a lot. And because things lately have a tendency of getting to be too much, too fast, I run.

Maybe I’m biased because she’s my mom and well, she wanted me so badly she sent for me from halfway around the world, but if you’re reading this, I have a hunch you agree – there’s nothing about Janet Elizabeth Henry Hodges that isn’t special and unique and wonderful. When she started losing her memories and her personality and everything that made her her, a big part of everyone who knew and loved her was lost, too. So when I decided I wanted to run a race in honor of Mom, there was no distance for me but the marathon – 26.2 miles – and no stage big enough but the streets of New York City.

So on November 6, 2011, before most people have started their first cup of Sunday morning coffee, I will be shaking off my nerves at the starting line of the biggest, most famous race in the world – the New York City Marathon. I am running as a member of Team Run2Remember, a group of 80something people who run in support of the Alzheimer’s Association to fight back against the disease that has stolen memories from our loved ones. So not only have I dedicated myself to completing a 26.2 mile race for only the second time in my life, I have set an ambitious fundraising goal of $6000, a small amount when stacked against all of the things I’ll never get to share or reflect on with Mom.

This is where you come in. I’ve never once thought this goal was unattainable because of all the people out there who love me AND my family, and who miss the real Mom with all their hearts. I’m writing to request your support with a tax-deductible donation to the Alzheimer’s Association in memory of all of her lost memories and the lost opportunity to make more. I can accept credit card contributions in any denomination on my personal New York City Marathon fundraising page, at, or checks can be mailed, with the enclosed donation form, to my home address: XXXX, Kansas City, MO XXXXX. If you have questions, don’t hesitate to get in touch –, or (XXX) XXX.XXXX.

Of course, it would be remiss of me to ask for an “investment” in my undertaking without providing an investor report, of sorts. To this end, I’ve started a blog with the aim of writing about my life as framed by both my running adventures (and misadventures) and my experiences with Mom’s condition and the effects it’s had on my family. It’s usually not a very easy thing to write, and from what I’ve heard, it’s equally difficult to read, but if you’re interested, I’d love for you to join me there –

When I initially received notification of my acceptance to the team, Dad was the first person I called to tell the good news. It wasn’t until a couple of weeks later, when wrestling the best way to personalize my fundraising page, that I found the best way to tell Mom – by telling everyone who loves her.

Dear Mommy,
Remember the journal you gave me when I was younger – the shiny red one with the Labradorpuppies on the cover? You told me if there was anything I wanted to know and might be too embarrassed to ask out loud, I could write it in a note to you in that book and you’d write back to me. We only wrote back and forth a few times before one of us lost track of the book…but I found it on a bookshelf the other day. My silly questions – written in teeny tiny handwriting and all signed “Me” – made me laugh, but your careful, considered responses, written so non-judgmentally and with so much love, made me cry. I’ve put the book in a safe place, where it can still be our little secret.

When I couldn’t think of what to write here, that book was the first thing I thought of. Twentysomething years later, confronted with the need to “write something meaningful” on this page, the only way the words are actually coming to me are in a letter to you – and believe me, I’ve tried pretty much every other angle possible. I think this is what they call “coming full circle,” except, in a horribly unfair twist of fate, you’ll be the only one who doesn’t get to read it.

Remember the time you decided to move that ugly white-tiled coffee table from the living room to the family room and you had a 5 year old Max screaming and crying, clinging to your leg, begging you, “Don’t change! Don’t change!” I’m not sure if anyone else actually remembers that, but for some reason, I think of that moment a lot lately. At the time, I thought he was being stupid…but nowadays, there’s a big part of me that screams every time something happens that wouldn’t have if you were still healthy and wholly you. We know you’re not getting your memories back, and that your Mom-ness is gone, but as all of our lives move on without you, I think it’s like we feel the space all the more as time passes. Does anyone ever get used to having their heart broken over and over again? Would anyone ever WANT to?

If I were a more religious person, I could fill that emptiness with my faith in God and my belief that he has a plan for everyone…but I’m not. I believe in God, but I’m also pretty sure that this couldn’t be part of anyone’s plan. It’s horrible and evil and awful and we miss you every day, even though you’re still, in the vital signs sense of the word, with us. There are so many things I’d like to ask you, and so many moments I wish you could have been a part of, that it could crush me if I let it. I know the same is true for Hanna, Max, Alex, and Dad.

It seems like people pat me on the back an awful lot these days and tell me to take care of my family. But really, I think we take care of each other. After all, we learned from one of the best, and I think we do you proud in the way we’ve come together. It’s for you and Grandma that I’m signing up for this, but it’s with the strength of Hanna, Max, Alex, Dad, and everyone that loves you and misses the real you with all their heart that I’m going to be able to finish it. I can’t think of a nobler cause to run for than the end of this terrible disease that’s robbed you of your you, and so many families of the people they love most. I wish you could be there with me, but in a sense, you’ll be with me every step of the way. With any luck, we’ll get a chance to talk about it someday.

In the meantime, don’t worry if you can’t remember. We’ll never forget.

Love always,

Thank you from the bottom of my heart for all your love and support.



If you read this, would YOU donate?

Wednesday, July 20, 2011


I received a Twitter mention and a retweet from Bart Yasso today, in honor of Mom and the cause. Runners are the most awesome, most generous people ever.

Tuesday, July 19, 2011

Random Thing I Wish I Could Ask Mom

This will be the first of (I hope) many posts centered around the "Random Thing I Wish I Could Ask Mom" topic. VERY random. If anyone has any insight into any of these questions, or thinks they can fill the memory holes, please let me know.

For Memorial Day this year, Brian and I packed up the dogs (both of them) in his single-cab truck and drove to Randolph, Nebraska to visit his mother. The weather was cold and damp and didn't lend itself to doing much outdoors, so we spent some time driving around and looking at the town - the schools, the businesses, the homes of his friends. It took about 20 minutes, tops.

That his city actually has enough kids to support its own school system kind of surprised me - seems like most of the people I know that grew up in small towns have seen their schools bulldozed and students sent to some consolidated school a couple towns over. Brian and quite a few of his high school classmates wound up going to the University of Nebraska and studying engineering, so the Randolph school system must have been doing SOMETHING right, at least in math/science education.

And yet, they never did science projects or had a science fair.

My suburban-raised response: "What do you MEAN, you never had a science fair? How can you consider yourself properly educated if you never did a science project?"

Of course, if you asked Brian, he'd probably tell you I didn't do a science fair project either - Mom did. Which might be about 40% true, and that's a pretty low percentage for where I grew up. Smart parents were the #1 weapon in a Westwood View Elementary School student's arsenal. They may not have technically done the work, but in a time before Internet made all the finer points of a science project and professional-looking presentation available to a fifth grader, having willing/able/eager parents made anything possible.

The first and pretty much only project stipulation was that we were not permitted to experiment on animals. I understood why that rule existed - the thought of a bunch of budding grade school animal torturers comes to mind - but I was still sorely disappointed that I couldn't do something with dogs, my favorite animals after I figured out unicorns probably didn't exist. So somehow, Mom came up with the idea of working with spiders.

And not just any spiders - specifically, the Spiny-Backed Orb Weaver (gasteracantha cancriformus), a small crab-like spider that looks like it hitched a ride straight out of hell. Apparently, they're quite common in the south, between Florida and Texas, but I'd never seen anything quite so creepy looking in person.

I never remember Mom showing any particular interest in spiders one way or the other. She was neither disgusted nor fascinated - webs were just another thing to clean out of the corners of the ceiling or point out to us, if she saw a particularly large and interesting one. (I also remember carefully pressing an orb web suspended on the back porch into a piece of sun-print paper and laying it out in the sun. As the paper darkened, the web stood out in bright contrast. Pretty cool.) But because she was a teacher, and a good one, she made ordering a bunch of red-and-black monsters from Carolina Biological and observing the effects of light on their web-spinning habits seem...well, normal. So normal I never really thought to ask why she put that particular idea into my head.

Twenty years later, driving down a muddy gravel road in a small Nebraska farm town discussing the merits of science projects as a part of the elementary curriculum, I wished I knew. It's a memory hole - not a big one, but it's there. In this case, not knowing why makes it sound like Mom did all the work and Brian is vindicated.

I know she'd back me up, if she could.

Wednesday, July 13, 2011

The Long & The Short Of It

After last weekend, I'm pleased to announce my IT band and I are no longer on speaking terms.

This is fantastic news. After bitching at me for months and months of training runs and resisting my attempts to tame it with therapy, it finally threw such a temper tantrum that it took me out of the running - literally - at the Illinois Marathon. After a day of legs so stiff I couldn't walk from the car to the front door of the place we stopped for lunch, it went quiet.

After a couple of days, I went for a very easy 4 mile run on Dauphin Island's asphalt trail, just to see if I could. Followed up with lots and lots of walking - on the beach and the streets of New Orleans. No word from the IT band.

I cautiously eased myself back into a regular run routine to see if it had anything to say. Nope.

Against the advice of my sports chiro, I ran the Hospital Hill Half-Marathon (at very easy effort. It was a HOT one!) Still, nothing.

So this weekend, with 14-18 miles on the schedule, I took it for a 17 mile spin at my shiny new long run training pace, just to see if it had any famous last words. Nope. Crickets.

Unfortunately, my GI tract decided to fill the silence - it had all sorts of things to say, and none of it was good. I was in luck that there were 3 bathrooms on the course, instead of the 1 that was marked on the map, because I needed all three of them in a bad, bad way. I'll spare the gory details, but let's just say the subsequent dehydration slowed me down a little and gave me a whole new appreciation for people who die of dysentery. Once I'd emptied my system completely and was sufficiently rehydrated, I was able to salvage the run and picked the pace up for a nice 10:14 average. I consider that permission to proceed from "cautious" to "cautiously optimistic" that the demon has been exorcised and my IT band will scream no more. (Knocking on wood, though, just in case!)

Even with fresh painful memories of an angry IT band, I wasn't too concerned about running 17 miles in the heat. I never have been. I'm a good student of distance running - I know all about conservation of efforts, holding back/settling in/finishing strong, adequately refueling at the aid stations, gauging my effort by my breathing (never over conversation pace!), and running at 9:30, 10, 10:30, and 11+ pace.

What got inside my head and psyched me out was not the prospect of a 17 mile run, it was the prospect of a 2 mile run - a time trial for the speed sessions I'm enrolling in to train myself to be a faster, more efficient, stronger runner.

Confession: I've never run anything shorter than a half-marathon. I limped (shin splints) most of a 4 miler just to get the notch on my belt and the experience of having run a race prior to my first half, and I did an easy-paced 8K a couple weeks after the Kansas City Marathon, but neither left me with much of an impression about what "run all-out for 2 miles" meant...except not to go out so fast that I'd wind up walking - or vomiting - along the way.

It's actually sort of ironic - I have a horrible habit of running down the first mile of a weekday training run like it stole something, instead of warming my muscles up at a lowered, reasonable pace for a mile or two before taking off. It's something I've been trying to train my way out of, but when your runs are the best parts of your day AND the only way you decompress, it's kind of hard not to get started as quickly as possible. So it wasn't really the first mile that scared me - it was the second. Thinking back, I'm not sure I've ever actually run two consecutive hard miles before without SOME kind of stop. 10 seconds, say, for Recon to go to the bathroom, 3 seconds to stretch my hamstrings, fix my hair, get a drink, a traffic light - things so insignificant that the only impression they leave is the tiny dent in the Garmin pace readout, but things that would give me that extra couple of seconds to rest, stretch my muscles, drink, catch my breath, whatever - before I took off again.

Either way, I was going into this with absolutely no expectations whatsoever. Because I'd been so plagued with injuries since I started racing, I knew all about playing it cautious, stopping to walk when it hurts, etc. and had absolutely no idea of what 100% effort feels like for me. I figured with any luck, it'd be something BELOW the lowest mile split of my training runs - 8:45 is the lowest for a mile that wasn't net downhill, I think. (I did an 8:20 last week, but that was with a stop for water in the middle.) But either way, I would have been happy with pretty much anything, as long as I didn't commit either of the above sins - walking, or vomiting. In fact, I'm pretty sure that would have been my first AND last speed session if I vomited. It's weird enough being known as "Brian's friend" by people who don't know me; I'm not sure if I could handle the "speed session vomiter" label.

When I first voiced my concerns, my Boston-qualifying (and speed session veteran) friend Jen reminded me that the time trial is just a jumping-off point from which to improve your times as the speed sessions go on. I tried to remind myself of that as I did a short warmup run with my friend Rachel, who's running her first marathon in September. "Warmup" probably wasn't a good word for what we were doing - it was, in fact, more like a slow wringing out of fluid. The thermostat in my car on the way home read 100 degrees, and the McDonalds billboard on the way to the session read 103. About one-third of the course was in the shade, but of course the breeze was totally cut off on the second third, on the sunny side of the abandoned strip mall. The final third weaved through a couple of medians, then we were back to the start - a 1/2 mile, mostly flat loop. And Brian was recording splits, so there wasn't going to be any hiding how I finished, either.

After warming up (2mi) and then icing down with lots of ice, wet towels, and drinking a few final cups of water, we were off. And yes, it was hot. The first loop was easy - I just let my legs fly like I would in the first mile of a regular training run. The second, I started to try to pick people off here and there, while still keeping an ear on my breathing and effort. I ran the first mile well - my Garmin says 7:47, but the split called was 8:02, so I took that. The third, I backed off a little, and my Garmin data shows it - instead of a pace mostly in the 7s, I ran a pace mostly in the 8s. It's almost like a brain scan - I was thinking, "Do I REALLY want to push this and wind up in a more difficult pace group that's going to kick my ass each and every week?"

For the final loop, I was pretty much out of gas. I started out promisingly with a 7:14 pace but quickly dropped back to 8s and even low 9s when I got in the sun and the breeze died. It wasn't until the finish line was in sight that I started moving my arms to make up for the deficit I was feeling in my legs, not giving a damn about how loudly I was breathing, driven not by time or inspiration or happy thoughts...I just wanted to be effing DONE. My pace jumped up from an 8:21 to a pretty amazing (for me) 5:51 and held there for 30 seconds...and then it was over.

16:18. I did it. My first timed short run, ever. I didn't walk, I didn't vomit, I didn't die. Winner, winner.

The icing on the cake was being told that my NYC Marathon goal - the one having so much doubt cast on it - was probably about 15 minutes...conservative.

"The average finishing time for a female marathoner, believe it or not, is a 4:30. You could probably easily finish in 4:05, 4:10," Eladio said, "or even 4. I'd say 4:15 is very doable."

So, if I can run slightly faster than needed for a 4:15 marathon, I can give myself a little bit of a time cushion. I can drink extra, if needed, at aid stations. I can take a couple of pictures, maybe one with my family. And I can finally stop worrying about getting waylaid by that all-important marathon-goal-time-killing X-factor - my GI tract.

NYC Marathon Goal: 4:15.

...if I can stay healthy, that is.

Monday, July 11, 2011

Bittersweet Birthdays

When there are five other people in your family - six, including the sis-in-law - chances are good someone's going to remember your birthday. But in the summer of 2007, we all managed, in quite spectacular fashion, to forget Hanna's.

To our credit, the rest of us were out of town at the time. Memorial Day was two weeks before Hanna's wedding, and Dad decided it'd be a perfect time for us to get away from wedding madness and relax a little. We don't get cell phone reception or have internet at the beach house, so all the devices get tucked away - and who actually looks at a calendar on vacation? It wasn't until we were camped out at the New Orleans airport, waiting for our flight, that I looked at my phone and remembered.

A fallen tree in empty woods might or might not make a sound, but surprisingly, a forgotten birthday in a family of six didn't make much of one, either.

She remembered, all right, she just didn't say much about it and was more concerned with our absence from Wedding Orbit. Of course, this was the trip that Dad and I managed to capsize the catamaran, so maybe we received our retribution in advance.

That's the only time I can ever remember my family letting a birthday go by unacknowledged. Our ranks of able memories may be one less, but birthdays mean more than checks in the mail and a brief phone call or Facebook wall message in my family, and always have. In a big family, a birthday is a very special day. You get to pick the dinner, you get presents, everyone pays attention to you...and you don't have to clean up afterwards. To further illustrate my point, I'm pretty sure Alex still holds a grudge against Jen for daring to marry into the family with a birthday so close to his.

So I was kind of surprised when Dad didn't call to let me know the plans for Mom's birthday dinner, and I was even MORE surprised when Granddad told me he was out of town. After 29 years of consecutive birthday dinners for Mom, this is the first that we wouldn't have a birthday dinner for her.

Should this, in fact, be a surprise? Last year's birthday dinner was anything but a good time. Dad had grilled steaks, and they'd come off the grill sort of tough and chewy. Mom, who hasn't sat down through an entire meal in a couple years, was orbiting around the table, and when she'd pass near Dad, he'd give her a bite and she'd continue to walk, chewing.

Except for the one she didn't chew - she inhaled it instead. Her face instantly started turning red and her eyes were terrified. We all jumped up from the table - Dad to start the Heimlich, Craig (my then bro-in-law) to call 911, and the rest of us to stand by helplessly, stupidly, not wanting to get in the way. She was breathing, but it's that horrible heaving noise I associate with getting shot in the chest or with someone having an asthma attack.

The 911 dispatcher told Dad to stop the Heimlich if she was breathing, no matter how labored. Shortly after, the ambulance came screaming into the driveway (bringing a lot of the neighbors to their windows or front doors). I remember Dad insisting on KUMed, over the EMT's insistence that Shawnee Mission was closer...and then they were gone.

We hadn't been at the table very long when all of this went down, but no one was hungry after that. We cleaned up and sat around the family room, waiting. After awhile, Dad called - apparently she'd coughed up the steak in the ambulance, but according to protocol, she still had to be checked into the hospital and examined. When they came home, Mom was visibly relieved and seemed happy to see us. We went outside on the patio and had cake - she was starving, but I was afraid to feed her anything but about 1/2 teaspoon at a time - and things started to feel almost, well, normal.

I guess I didn't really realize how significant this was until later. Carolyn, a friend of my parents' from college, was in town visiting, and Dad was telling her the birthday dinner story.

"I really thought it was going to be the end," he said.

Well, it wasn't the end, and we've officially made it another year. If that's not a reason to celebrate, what is? Shortly after posting a link to my site on Facebook noting Mom's birthday, Jen was in touch to schedule a dinner for this weekend.

So tonight, despite the triple digit temperatures, I went for a run for Mom. Just three miles, but I definitely left it all out there. When it's that hot, your entire body does the crying for you. I feel better now...just tired.

Photo: Mom and Jen in Gulf Shores, AL. May 2007.

Thursday, July 7, 2011


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.

Wednesday, July 6, 2011

"That which does not kill us makes us stronger." ~Friedrich Nietzsche

In the summer of 1960, Dmitri Shostakovich went to Dresden to write the score for the film Five Days, Five Nights, in which five Soviet soldiers are tasked with tracking down art treasures stolen by Joseph Goebbels and the Nazis. The director, Lev Arnshtam, told the New York Times that the film focuses on a German painter "who feels that art should depict suffering and therefore a measure of life."

Instead, Shostakovich, inspired by the scenes of devastation and war in Dresden, composed his Quartet No. 8 in C Minor (op. 110). The score is officially dedicated to "the memory of the victims of fascism and war," but personal correspondence indicates the quartet was written almost as more of a suicide note. The Chicago Symphony Orchestra program notes describe the last movement of the piece with the following:
"...slow and desolate yet filled with intimate asides...too numb even for recollection...just the hollow sound of inconsolable sorrow."
In short, the perfect piece for four Johnson County high school-aged suburbanite musicians to perform, right? Not to trivialize the tribulations of a high school student, but when your painful experiences are limited mostly to the death of a pet, getting a B when you thought you put up an A effort, and not getting asked to Homecoming, chances are good you're not approaching this piece with the emotional depth it demands, no matter how technically skilled you might be. Those things all suck, but they're hardly the stuff of "inconsolable sorrow."

Unfortunately for me, now that I have a better idea of what might actually be meant by "inconsolable sorrow," I don't have the violin chops of my 15 year old self. To try to play anything now would be an exercise in reverse frustration, like coming home with the gas to fill an empty tank only to discover the car is no longer there. Writing, something else I was decent at 15 years ago, is equally frustrating sometimes - I still have the words but I no longer have the time or the patience required to get the thoughts out properly. If it comes to expressing myself poorly or not expressing myself at all, it seems that more and more, I've been defaulting towards the latter. (Evidence: Every single journal I've started over the years or novel idea I've written down, only to go unfinished, abandoned, forgotten. I am where ideas go to die.) I'm a mediocre, derivative visual artist who likes making messes with canvases and oil paints and watercolors but rarely does more than that, and I will occasionally get lucky with a camera...but only occasionally.

So what do you do if all of your creative outlets are shut off and you're not cruel enough to torture cats, fry ants with a magnifying glass, or waterboard terror suspects at Guantanamo Bay? The same thing any normal person does when they see a crushing clusterfuck bearing down on them - RUN AWAY. Literally, in my case. I'm not proud to admit that the first few times I hit the streets it was to escape the pain that was threatening to make me crazy. Running was one of the only times - and still is - that all the little voices in my head stop whispering their horrible what-ifs. The discovery that the wind blows between my ears in a peaceful white-noise sort of way when I run was a blessing, and still is.

And that, gentle readers, is how I became a runner. The same way gunshot victims wind up hooked on methadone. The only difference is that the monkey on MY back wears a kickass Garmin.

All over the world, millions of runners have managed to turn destructively running FROM their pain into constructively running FOR it. The 2010 New York City Marathon alone rose in excess of $30 million for 190 charities. In its two years of existence, the NYC Team Run2Remember has raised over half a million dollars for the Alzheimer's Association, funding 5 full time positions at the NYC Chapter and allocating $115,000 towards NYC-based research projects.

In short, I've been given a great opportunity to make a huge difference in the fight against Alzheimer's and make sure no one else has to go through what my family and loved ones have gone through in slowly losing such a wonderful and beautiful person. And with a canned optimistic horseshit answer like that, I could be chosen as the next Miss America. If they found a cure for dementia tomorrow, no one would be more thrilled than I am...but truth of the matter is, a cure won't deliver all the memories it's stolen from my mother, apologetically gift-wrapped and tied with ribbons. Never having to encounter the disease again won't make up for what it's stolen from all of us. And I'm not 100% sure I'll ever get over that and not, deep down, wonder why the fuck the cure couldn't have come even 6 years sooner when Mom still knew enough to sing Beatles songs and dance and put her own clothes on and eat her own food without choking and still have an absentminded recollection of who we all are and why we love her. Sometimes a cure for dementia flat out feels like someone ELSE's goddamn cause, because ours is already lost.

After writing paragraphs like that, the ones where I'm wiping away tears as fast as I'm typing words, I feel the way Ben Franklin must have felt watching a lightning storm. There's power in this situation, a kind of horrible dangerous power. I need to learn how to use it and not let it use ME. If I can do this, I don't think I'll be writing any world-class pieces of music, painting things that make people cry, writing the Great American Novel, or winning the Tour de France, but maybe in spite of everything I might - just might - finish the New York City Marathon, then figure out how to get by and maybe actually do some good in the process.

Or, to put it a different way, "If we could somehow...harness...this it...into the flux capacitor, it just might work."

Easier said than done, but sometimes I think I'm getting there.