Kitchenophobia
I am scared of my kitchen.

What it boils down to (sorry!) is that my clumsy movements and lurching around leave me more vulnerable to burns, cuts, or other kitchen injuries than I was when I was just an average klutz. Last week a minor incident—one that could have been much, much worse—stripped a little bit more of my self-confidence and independent spirit away, and my world shrunk yet again.

I guess it was only a matter of time. Despite how tiring it is to move around from fridge to stove to counter to pantry to oven, I have managed to compensate by taking frequent breaks or doing some tasks sitting down. And while it's hard to lift, carry, open containers, pour and stir, it's still not impossible. Not quite yet.

So I have continued to do some cooking and baking because it makes me feel at least a tiny bit useful, it's something the kids and I can do together, and I enjoy it. Plus, silly as it may sound, I feel a great sense of accomplishment and pride at the finished product (a pride that is usually way out of proportion with the meatloaf or lasagna or cookies I have actually produced!) because of what I went through to make it.

But ever since an attempt at toffee cookies left me with a glob of boiling (248ºF to be exact) caramel mixture on my thumb—with no way to quickly get to the sink to run it under cold water or even to quickly get it off—I can't seem to shake my fear. And the painful blister on the pad of my thumb won't let me forget.

Luckily, it was a small glob and not the whole pan. But the insistent voice in my head keeps reminding me, it could have been. It could have been the whole pan. It could have been a trip to the emergency room and a hospital stay. It could have been very serious.

And as much as I don't want to deal in could-have-beens, anticipating danger is really the only evasive maneuver I have at my disposal. I can't run. I can't leap out of the way. I can't catch myself if I slip or trip. I either head off danger, or I get out the first-aid kit.

So now what? I am scared of my kitchen. The question is, am I even more afraid of losing another piece of me?

A New Year, A New Approach
I think it’s time to try something different.

Once again, I’m sorry for my long absence, and I’m overwhelmed with guilt and embarrassment. I just can’t seem to handle everything life throws at me from September through December. There are so many topics and experiences I want to write about, but all I seem to produce are random phrases and ideas, scribbled down on a notepad on my nightstand as I collapse into bed, that aren’t ready to publish. And I can’t seem to find the time or energy to develop them into more fully-formed essays.

As my body weakens, even the simplest tasks are eating up more and more of my most precious commodity: time. But giving up on those tasks—giving up on what still remains a semblance of a “normal” life—is not an option. Someday no amount of stubbornness and determination will be enough to force my arms and legs and back muscles to lumber and lurch around the house. Someday my mind will be the only thing that works. Until then, I’m not willing to concede an inch.
 
Throw in a hospitalization and a prolonged battle with H1N1 this fall (more on that later), and this year was harder than ever. I just couldn’t get to everything I wanted to do, and once again, I abandoned writing.

So, if I’m going to continue to have a website, it’s time for me to try something different. Instead of jotting down random notes, I’m going to try blogging those brief notes. Instead of worrying about whether I’ve crafted a fully-formed essay, I’m going to try being satisfied with more frequent, less developed entries.

I’m not entirely sure how this experiment will play out—old habits die hard—but it’s gotta be an improvement over the nothing I’ve been doing, right?

Walking...4Life
I can't believe it's already this time of year.

We are thrilled to have over 100 friends and family members signed up to join us tomorrow at the 8th annual Les Turner ALS Walk4Life, what is sure to be an awesome and successful event.

I've been predicting for months that the weather will be sunny and 73, with a gentle breeze blowing in off the lake, with rainbows and unicorns, and cotton candy clouds.
 
Looks like I'm off by 3 degrees, but after last year walking on The Rainiest Day in Chicago's Recorded Weather History (seriously. 9/13/08. look it up.), we'll take it.

The actual physical act of walking has been on my mind a lot lately. There is only the most miniscule possibility that I will be able to complete the two-mile course tomorrow, and I'm concerned about how my not making it will affect me mentally.

I'm trying to prepare myself for it: "Hey, as long as you can still lift a margarita glass, you're good!" or "Zacky doesn't care if you can walk, as long as you can still get your butt kicked by him on PlayStation baseball!"

But I know that I've gotten a huge emotional boost each year that I've completed the Walk, and it will be hard to avoid an equally huge disappointment if/when I fall short of my goal.

My main challenges tomorrow--besides my mental state--are my back, my hip, and my stamina. I've had two major bouts of illness this year, both of which left me bed-ridden for many days. My body has paid an enormous price for those long days and nights of inaction.

As a result, I've had a lot more trouble getting around over the last few months. I can no longer trust myself walking with just a cane, not even around the house. I must have another source of support--a wall, a chair, a rail, a counter, an arm--even though I generally touch that support only lightly. It's not my strength, it's my stiffness and balance and coordination (lack of balance and coordination, actually) that are limiting my movement. And that's a huge bummer.

I'm  approaching the time when I'll need a walker everywhere I go. In reality, I'm probably already there. I guess I'm just having a hard time recognizing the fine line between "stubbornly fighting" and "stupidly risk-taking."

But it's so hard to give up even an inch to ALS. Giving up on walking is deeply distressing, and the loss of independence is devastating. As is so much about this disease.

And that's why the Walk4Life matters so much to me. Because while I mourn my latest physical loss, I know too many thousands of others have gone down the same path. Too many thousands more will go down this path next year, or the year after, on and on until there is some kind of breakthrough.

So I will get out there tomorrow and take as many steps as I can, joining thousands of others along the lakefront chasing unicorns and rainbows and that elusive treatment that is somewhere on the horizon.

And while my psyche will likely be dealt a blow, I will find strength in the support of loved ones and friends who continue to lift me up when my inner strength falters.

To everyone who joins us tomorrow--whether in body or spirit, through words of encouragement or donations--I offer my deepest thanks.

40

Wow!!!!!

I can't believe this day is here. It sure feels great!

I've never been one to put much emphasis or thought into reaching different age milestones. Age is just a number, after all, and I still feel the same on the inside.

And, really, when you think about it, it's waaay better to reach the milestone than NOT reach the milestone, y'know?

But this time I'm looking at hitting a round number a little differently.

When I was diagnosed nearly 5 years ago, Jim and I had little hope that I would reach 40. Apparently, I even made some comment about how if I did somehow survive to see 40, we would have "the Biggest Bash Ever!!!" (And yeah, there probably was some naughty word I shouldn't repeat between "biggest" and "bash"...)

I don't quite recall the moment, but the sentiment sure makes sense. After all, 80 percent of ALS patients do not reach the five-year survival mark (a milestone I will reach this week). Think about that for a moment. 80 percent won't make it five years.

(Are you thinking? Good.)

While the odds of me seeing this day were slim, somehow--with prayers, encouragement, support, an awesome family, wonderful friends, a few well-timed kicks in the seat of the pants, and a double dose of the stubborn gene (thanks, Neas and Brauss ancestors!)--I've made it.

Yet even in my joy, I am painfully aware of the families who never have the chance to celebrate five years with their loved one. So I will continue to use my "extra" time to make a difference on behalf of them.

My two life goals have remained unchanged: to spend my time making as many great memories as possible, and to do all I can to advance the fight against ALS.

The party today is small--just family. My sister and brother and their families will be here to mark the occasion and make more of those great memories. (And yes, I'm sure there will be margaritas involved...)

But the real celebration is next week.

Next Saturday, September 12, my family, friends and I will be doing our fifth Les Turner ALS Walk4Life at Montrose Harbor in Chicago. The Walk4Life is always special to me, but this year is particularly meaningful coming on the heels of my 40th birthday and five-year anniversary. This Walk--well, quite frankly, I expected my family to be walking without me.

Instead, I hope to walk at least some of the two-mile course.

We'll see some of the same familiar teams and families--walking either alongside or in memory of their loved ones. We'll see new teams of families who are just beginning to come to grips with an ALS diagnosis. We'll see families who have been ravaged by the familial version of the disease (17 family members and counting for one team).

And as I think about the life-affirming, celebratory day that is the Walk, as I think about all the families who have fought or are fighting, I can't help thinking beyond.

I wonder when the advance will come. I wonder when our community, the ALS community, will see the big breakthrough that enables patients to, at the very least, survive longer.

A cure would be great--don't get me wrong. I'd love nothing more than for all ALS patients to be able to drink a magical elixir that would restore us to fully functioning bodies.

But what if we could even just move the numbers a bit? What if, instead of 2-5 years, newly diagnosed patients could be told the ALS survival rate averages 8-10 years ? What if we had a little more room for a little more hope?

That's why I walk. That's why the Walk4Life matters so much to me. This is the one event each year where we come together with thousands of others in common cause to raise money and awareness to move a little closer to that daydream of mine.

We, as a society, have made incredible advancements in fighting other diseases and conditions. With enough attention, enough money, enough research, those same advancements can be made for ALS patients.

That is my birthday wish.

It's time.

So Sorry: Cookies 4 a Cure Canceled
Despite our best intentions, Nick and Emily are NOT going to be at Farmers' Market this Wednesday (August 12) with their "Cookies 4 a Cure" booth.

I have been--and continue to be--extremely sick since our return from a family vacation in Mexico. I feel terrible about this, and the kids are very disappointed. However, they (we) are grateful for all the support and encouragement they received earlier in the summer, and they will be seeking additional ways to raise awareness and funds to fight ALS in the near future!

They Tried to Make Me Go to Rehab...
I said, "Yes, yes, yes!"
Since I'm in pain and usin' a cane, I guess, guess, guess
I should make the time, cuz no one thinks I'm fine
They're tryin' to make me go to rehab, I'm a mess, mess, mess

I'd rather be kissin' Zack's cheeks
I ain't got too many weeks
'Cause there's no cure
No cure you can give me
That's what I heard from Dr. Siddi-i-ique

I try to show a lot of class
But I keep on fallin' flat on my ass

They tryin' to make me go to rehab
I said, "Yes, yes, yes!"
Since I'm in pain and usin' a cane, I guess, guess, guess
I should make the time, cuz no one thinks I'm fine
They're tryin' to make me go to rehab, I'm a mess, mess, mess

The man said, "Why you think you here?"
I said, "I hurt in my rear
I'm gonna, I'm gonna lose my balance
So I always keep a walker near"
(He) said, "I'm just so damn impressed
That you even manage to get dressed"

They tryin' to make me go to rehab
I said, "Yes, yes, yes!"
Since I'm in pain and usin' a cane, I guess, guess, guess

I'm not ever gonna run again
I just, oooh I just hate my limbs
But I'm gonna spend these weeks
Do everything I can to try to mend

It's not just my pride
It's just cuz my neurons died

They tryin' to make me go to rehab
I said, "Yes, yes, yes!"
Since I'm in pain and usin' a cane, I guess, guess, guess
I should make the time, cuz no one thinks I'm fine
They're tryin' to make me go to rehab, I'm a mess, mess, mess

(With apologies to Amy Winehouse)

Can I Still Walk 2 Miles?
Uh-oh, my Magic 8-Ball says, "Outlook not so good"...

But hey, I'm going to give it a shot again anyway at this year's Walk4Life (Sept. 12 at Montrose Harbor in Chicago), and whether I can make it or not, I'm going to celebrate the fact that I'm still here and giving it my most stubborn all!

Won't you please consider joining me and doing something--anything!--to encourage me to keep putting one foot in front of the other?

I'm thinking you could walk ahead of me and wave a big Cubs "W" flag to motivate me to keep pushing on to try to grab it and stomp it...or you could carry a frosty, salt-rimmed margarita and a fresh dish of chunky guacamole and chips just beyond my reach (and maybe even taunt me by scooping a mouth-watering glob of guacamole on a chip and savoring it right in front of me, leaving a maddening little dab of avocado-y goodness right at the corner of your mouth)...or how about getting your hands on the draft of the next George R.R. Martin book and reading tantalizing excerpts in a hushed tone of voice just out of my earshot...

C'mon, I'm sure you can think of other ways to torment/motivate me, and the best part is, you can indulge your most sadistic impulses and it's all for a good cause!!!

Seriously, please check your calendar, and if you have anything else scheduled for Saturday, September 12, at 10 a.m., call whoever you need to call to cancel and say, "Look, I'd really love to help you wash your hair/clean your air ducts/make a macramé purse, but my friend Aimee needs me even more that day...can we reschedule?"

Because it's true: I need you. I need you to be there if you possibly can. I need you to throw all your strength, all your positive thoughts, all your good vibes, all your energy into pushing me (figuratively, please) across that finish line. I need you to supply every ounce of motivation you can possibly muster to keep me plodding along for as many painful steps as it takes. I barely, barely, barely, hung on last year, and I need you to tell me I can. do. this.

I just asked my Magic 8-Ball, "If enough of my friends and family come out to support me, motivate me, taunt me, coax me, push me, threaten me, and encourage me, then can I make it the 2 miles?" and it said, "Signs point to yes"...

Sign Up Now!!!

(more of a guilt trip on this--and free massages!--on the Walk4Life 2009 page)

"Today, I consider myself the luckiest man on the face of the Earth..."
With those immortal words, Lou Gehrig bid farewell to the Yankees, 60,000+ adoring fans, and Major League Baseball 70 years ago today in an emotional ceremony honoring baseball's Iron Horse.

Today, MLB commemorates that iconic moment at all of the fifteen ballparks that are hosting today's games, paying tribute a man who faced adversity with grace, courage, and enormous strength.

We are thrilled to be in Cincinnati and looking forward to what will surely be a moving tribute--and an enormous boost to raising awareness about ALS and Gehrig's heroic battle.

Cookies 4 a Cure Is Back!
Nick and Emily will kick off this year's Cookies 4 a Cure booth at the Grayslake Farmers' Market Wednesday, July 1, from 3:00 to 7:00 p.m.

They started their two-day bake-a-thon yesterday and will work furiously today to get everything ready for their 2009 debut.

Nick is concerned that the lousy economy may hurt sales, so dig the change out from under the couch cushions (thanks for that tip, Kelly!) or check under the seat of your car, and if you're in the neighborhood, come on out and buy a cookie! You'll be glad you did! (And you'll be back on July 15 and August 12...)

A Kiss Is Just a Kiss (Or Not!)
Zacky has really wanted to go the movie “Up,” and since the weather was chilly and overcast today (what’s new?), we decided this afternoon was as good a time as any. 

Zacky was a real sweetheart, rubbing my arm when he heard me sniffle during the movie and whispering, “It’s okay, Mom, I think there will be a happy part at the ending.” 

He was right, of course, and we all ended up thoroughly enjoying the movie (though Jim and I agreed that kids’ movies are some of the saddest movies we ever see).

On our way home, the sun broke through the clouds, and the kids began clamoring for a trip to the park. Jim and I looked at each other, with one of the themes of the movie fresh in our minds—that the ordinary moments are often the most memorable ones. Why not?

So we made an impromptu stop. The kids immediately started up a game of tag, but Jim and I—sitting on a nearby park bench—soon noticed that Zacky’s 5-year-old legs put him at a severe disadvantage.

I nudged Jim. “Go play with them,” I suggested. “Nick won’t be so cocky if you’re in the game!”

Sure enough, the game grew considerably livelier—and louder—with Jim in the mix. He ran down Nick, he lifted Zack up to the monkey bars to get Emily, and he threw up obstacles for Nick and Em that helped even the playing field for Zack. With all the laughter, good-natured taunts, and squeals, I was itching to get in the game.

So I did.

I waited for Zacky to be “It” again, and called him over to the park bench where I was soaking up a few precious rays. 

“What?” he panted, pushing up his damp bangs.

“Touch my arm so I’m It, and then I’ll ask Dad for a kiss and get him!” I whispered conspiratorially.

Needless-to-say, he loooved that idea! He surreptitiously brushed my arm, then ran off again.

“Honey, will you give me a kiss?” I immediately called to Jim, all innocence and sweetness.

Jim, of course, had seen the whole thing (it’s not like I can hide!), but he gamely played along. He swooped in for a kiss, as I playfully tapped him on the shoulder.

Zacky, gasping for breath through his peals of laughter, squealed as he jumped up and down, “Dad, you're It! We tricked you!” 

An ordinary moment, but one I will hold in my heart forever.