Rules Redux

11. Never, ever sit in a so-called "soccer chair" unless you have a friend or family member nearby (at all times) who can help extricate you from that low-slung seat. Especially if you're at a party where the music will drown out your feeble calls for help.

Rockin' Out to "Camp Rock"

I'm sitting here listening to the "Camp Rock" CD play for the 48th consecutive time on continuous loop, with Emily's spirited vocals joining Mitchie and the gang from the shower. This CD travels all over the house with her--yes, even into the bathroom--because a moment without "Camp Rock" is a moment my 8-year-old can't have back.

It is the background  foregound music when we're baking, playing a game, cleaning, eating, or falling asleep. And Emily's indefatigable voice is right there, belting out every note with even more gusto than the teen pop stars she idolizes.

The tunes are upbeat and catchy and the lyrics come straight from the "be-true-to-yourself"  Disney playbook. Having survived a hardcore Teletubbies obsession with Nick that nearly tore our family apart, there are definitely worse addictions than "Camp Rock."

My only complaint is that I can't join in.

I'm learning how to be satisfied with just listening, but it's been a long time getting to this point. I was never an enormous vocal talent but have always felt the power of music as one way of unleashing a wide variety of emotions. And I never realized how much I would miss that outlet until it was closed off for me.

In the early weeks and months as my speech deteriorated, I couldn't even bear to listen. I cringed as I sat in church through hymns and anthems, unable to keep up or carry a tune. I silenced the radio in the car. I avoided the TV room when the kids were watching Disney movies.

But eventually I realized that I couldn't live a music-free life. I make do with singing along in my head and focus on enjoying the amazing vocal gymnastics others can do.

Where does music fit into your life? Do you go weeks without turning on the radio? Do you experience shortness of breath when you can't find your iPod? Do you have instant total recall of an event or a person with just the title of a song or the name of an artist? What memories are inextricably linked to the soundtrack of your life? 

A sampling of my most vivid musical memories include these gems:
 
...holding my sister hostage one summer at my grandma's house, while I sat on grandma's teal couch (with silver threads running through it) and Renée sat on the floor, me brushing her hair only as long as she kept playing her 45 of Eric Carmen's "Never Gonna Fall in Love Again"
...shrieking the lyrics to Survivor's "The Search is Over" with my friend Abigail as we went up and down the rows detasseling corn (a rare instance of public [non-choir] singing I can  only attribute to heat delirium and boredom)
...trying to sing along to my 45 of Billy Joel's "It's Still Rock and Roll to Me" but struggling with some of the lyrics until finally I broke down and begged Brent to tell me, but he would only tell me on one condition--that I would write out what I thought the lyrics were first so he could ridicule me mercilessly for weeks (I did it. And he did it.)
...singing and dancing along with a big group of girlfriends to "Paradise by the Dashboard Light" and "Mony, Mony" at too many college parties
...riding the metro and listening to my Walkman, lip-synching along to the awesome mix tapes Jim sent me every couple of weeks during my semester in Paris
...singing 2-month-old Baby Emily to sleep by the Christmas tree with Celine Dion's Christmas CD
...my favorite singing of all: performing the Aladdin "A Whole New World" theme song duet with 4-year-old Nick every night at bedtime for months on end

Even now, a few notes of a song can transport me back to a specific place, a moment, a boyfriend, a roommate. Billy Joel's "The Longest Time" and the Police's "Every Breath You Take." Chris DeBurgh's "The Lady in Red." Anything by Whitesnake or Van Halen. Orleans' "Still the One." Styx's "Babe." Bryan Adams' "Everything I Do." Eric Clapton's "Wonderful Tonight." Mike and the Mechanics' "The Living Years." All have an immediate association for me the instant I hear them. (You know who you are!)

And it pains me that even in the privacy of the shower or when I'm alone in the car, I can't join in with the radio. Even in the shelter of a group-sing of "Happy Birthday" or the hymns at church, I can't join in. I can't follow a simple melody, and I can't even mouth the words quickly enough to keep up.

Is this the worse thing ever to happen to me as a result of ALS? Obviously not. But it's another example of the many ways ALS steals a little piece of its victims at a time, leaving us less and less of our former selves and the simple pleasures we once enjoyed.

So, I watch Emily's face as she rocks out to "Camp Rock" and focus on taking pleasure in her ability to unleash her emotions. Simon Cowell would definitely find her lacking, but with her utter enthusiasm and infectious grin, she's definitely my Idol.

Slap, Scratch, Repeat...

We attended a great end-of-the year baseball party at a beautiful house on a lake tonight. (Thanks to Collin's grandma for opening her home to us!) We spent our night with the team's terrific coaches and parents, and everyone enjoyed fun activities, a cookout, a bonfire, s'mores, and a funny awards presentation.

We did not enjoy the presence of roughly 8 million mosquitoes.

Yes, the mosquitoes were thick and vicious, with at least six somewhere on our bodies at any given moment. Even though we coated ourselves in layer after layer of repellant, they attacked our feet, ankles, legs, arms, hands, necks, faces, backs, scalps--any exposed skin, and much that wasn't exposed.

And as I kept flapping my hands in front of my face and futilely slapping wherever I felt a bite, I also kept giving silent thanks that I'm still able to bat away mosquitoes.

Many of my fellow ALS patients are not as fortunate.

Why Did the ALS Patient
Cross the Road?

a) To get to the other side.
b) To get another EMG! (duh)
c) To get some new motor neurons.
d) To get to the 2008 ALS Walk4Life on Sept. 13 (register here).
e) To get to the "buy one, get one free" medical supplies sale!
f) To get a margarita. Or two.
g) To get in line for the cure. 
h) To keep people (who weren't even there when I started crossing) waiting as I hobble slowly with my cane...shuffle-thump, shuffle-thump...taking my good ol' sweet time...dragging my toes a little...chuckling to myself that I'm making you late for work or dinner or your child's T-ball game or whatever...and just generally enjoying the heck out of the fact that I can exploit my terminal illness to bring misery to others as well! 
i) To get from the parking lot into the store.

(I'll give you a hint: If you think there's even a teeny-tiny chance that the answer is "h," please take a few minutes to skim my website!)

While I would certainly cross the road for any of "a" through "g" (especially "f" and "g"), today I happened to be crossing the road to get from the parking lot to the store (boring old "i").

Anyway, while 99 percent of drivers are kind, gracious, and patient as I try to "hurry" across (I truly am going as fast as I can without falling), there is that 1 percent that just scares the hell out of me.

These drivers--who are nowhere in sight as I step out into the traffic lane because I wait until it is absolutely clear--come whipping around the corner from two aisles over, edge closer and closer as I'm crossing, and finally nip at my heels as I barely step out of the lane in which they are now rocketing past.

What they can't tell is, I'm in a hurry too. I'm in a hurry to cram my whole life into perhaps just a few more years. I'm in a hurry to impart every life lesson, every family story, every nugget of wisdom I've ever acquired to my kids. I'm in a hurry to bake 10,000 cookies, do 500 craft projects, and help with 2,500 homework assignments. I'm in a hurry to bestow a million kisses and receive a million hugs. Today, I'm just in a hurry to get in out of the heat and to get t-shirts for my kids for a 1980s-themed party this weekend.

So, for the vast, vast majority who smile and wave me across and wait patiently until I am completely clear of the traffic lane, I offer you my deepest thanks.

But, for those who are in a huge hurry and bulldoze me, or other disabled slowpokes like me, out of the way, please consider that inside we just may be in an even greater hurry than you. Or, if it helps, consider that we have friends who are 6’9” and solid muscle…

Rules of the Game

I broke a rule today.

I was running late this morning and trying to make up a little time in the shower when I briefly let go of the safety bar to wash and rinse my hair with both hands. I made a conscious decision to blow off one of my rules--foregoing my usual one-armed, slowpoke method in favor of the much faster two-handed approach. As I tipped my head back to let the water cascade over my hair, I started to slip.

****! ****! (I'll leave the exact words I yelped to your imagination...)
 
My left arm flew out and I managed to catch my elbow and forearm over the bar. Heart pounding, weak-kneed, I somehow managed to save myself. A really close call.

But I (re-)learned a valuable lesson: taking a shortcut to try to speed up any process almost always means I end up taking longer--especially when I need to go get an ice pack, clean up blood, or worse. (Luckily, in this case, I just took longer than usual because I was shaken up.)

Following is a sampling of the other 1,001 rules I've established to try to navigate an increasingly dangerous world, given my physical limitations. Some are hard to remember; others are born of mistakes I'll only make once.

1. Never ever take a step backward, unless you are holding on to something stable and strong (like your handsome husband J).

2. If you are standing up and feel a sneeze coming on, grab hold of anything sturdy. Fast! If nothing sturdy is nearby, double over forward to get lower to the ground, so you won't have as far to fall.

3. Always sit down when putting a top on or taking one off. Balance is a tricky thing when you're lost inside a shirt.

4. Never carry a sharp knife across the kitchen. Always walk around the perimeter, skimming the knife an inch or two above the counter. (And never bring a knife to a gun fight.)

5. Smile, smile, smile! At everyone. Everywhere. A smile helps counteract whatever else they see.

6. Always dry your hands thoroughly after washing them. If you're in a public restroom where the towel dispenser is empty, dry your hands on your pants. Never try to use your cane with a wet hand. Handprints on your pants are way preferable to floor-tile-prints on your face.

7. When ordering a fountain drink, always ask for a small soda--even if it's not the most economical option. Anything larger than small is too heavy to lift without your wrist collapsing. (And since most small drinks are at least 44 ounces, you'll never be thirsty, anyway.)

8. If you must put something in or pull something out of the hot oven, stand  to the side of the oven and hold onto the counter. Avoid leaning in over the oven door. (You already have nightmares about ALS personified as the malevolent witch from "Hansel and Gretel," where she's putting her foot in the middle of your back and pushing you into the oven. No sense making that horrible dream come true.)

9. Always make sure you have a way to get back up before you squat or sit on the floor. You don't want to be caught where you must crawl 20 feet or more to get to a solid piece of furniture where you can push or pull yourself up. If you must crawl, throwing in a break-dancing move can really ease the tension for onlookers.

10. When opening the hatch on the van, pop the handle (gently!) and insert the handle of your cane under the edge of the door. Move carefully to the side of the van, getting your body clear of the side edge of the door. Leaning against the side of the van, use the cane to lever the door open. Do not trap your fingers between the door and door frame ever, ever again.

HAPPY BIRTHDAY, JIM!
Happy birthday to you,
Happy birthday to you,
Happy birthday dear Superman,
Happy birthday to you!
We love you "big much!"

Say What?

Okay, folks. I need your help! After nearly four years, I still don't know what to say about my ALS in many situations.

I've been asked if I've had a stroke. I've been asked if I'm hearing impaired. I've been asked if I have MS. People are curious about my speech, my gait, my painstaking movements, or other outward signs of an unidentifiable disability. No one ever asks if I have ALS, though--I kind of feel like confetti and streamers should fall on the first person who does--so I'm just not sure how to respond. I should be used to this by now, right?

Anyway, here's my latest example.

I went to Kohl's a few days ago, and I was moving very gingerly at the checkout counter because I can lose my balance so easily. As I unloaded items from the shopping cart, I was cautiously shifting the weight from the cart to me to the counter in stages, careful not to throw off my equilibrium. 

"Gingerly," "cautiously," "careful"--all polite words that soften the truth: I was slow. Slow, slow, slow. Slow unloading my cart, slow moving forward along the counter, and slow filling in the amount on my check (having written out the rest in the car before I went in because I hate being that person).

After my transaction was complete, and all of my items had been loaded into one enormous bag, I braced myself as I slid the bag off the counter--inadvertently grimacing as I did so.

"Is something the matter, ma'am?" the sales lady asked, frowning perplexedly. I'm not sure, but it's possible she had already noticed how slowly I was moving.

"No, I'm fine," I smiled.

"Oh, do you just have some aches and pains, then?" she pressed on.

"No, actually," I sighed, biting my bottom lip. Here we go again. "I uh...I have a terminal illness--do you know of ALS, Lou Gehrig's disease?"

That got an immediate reaction. She nodded mutely, her face a mixture of fear and pity, and drew back as if she could catch it from just being in close proximity.

I immediately felt like I should apologize or comfort her. Why? I don't know. I guess because of all the answers she might have gotten, she certainly wasn't expecting that one. And while I want to raise awareness, I don't want to bum people out.

Some of my friends and family think that's ridiculous--that I'm worried about leaving a nosy sales lady in a down mood when I'm the one with ALS.  And I do get their point.

But I also feel very much like I'm representing the ALS community in that situation. And while I think there's value in letting her know that an ordinary mom with a pile of summer clothes for her kids can have ALS, I don't want her to be left feeling slightly repulsed. That won't help engender support for our cause or our community.

So, how about it, readers? Any ideas for me? How can I raise awareness without blurting out a truth that will make people recoil?

Good Fortune

An unexpected event will soon make your life more exciting.

"Are you thinking what I'm thinking?!" Emily enthused after reading my fortune tonight at dinner. She leaned in to touch her forehead against mine, a gigantic grin lighting her face, her cheeks scrunching her dancing eyes into half-moons. "I think it means a cure for ALS!"

“Water in My Eyes”

Zacky stands uncertainly next to the ottoman, a serious look on his face. I lift my arms and reach for him, sensing he’s not going to ask me to put on his favorite “tee-vwee” show.

“What’s going on, bud?” I ask

 He climbs up on my lap, slips his left arm around my neck, and nestles his head on my shoulder.

“Are you sure ALS always makes people die?” he asks.

Damn.

I’m sooo not ready for this, not prepared for my baby to be asking the tough questions that are as much a part of this disease as slurred speech or an unsteady gait. I’ve fielded these questions from Nick and Em for years, and while they sometimes surprise me with an out-of-the-blue question or comment, I’ve grown used to forming answers suitable for an 8- and 10-year-old.

But Zacky is 4½. So young. So innocent.

The ALS conversations with Nick and Em began when they were not much older than Zacky is now, but I’m woefully out of practice (and those conversations unfolded over many months). While Zacky and I have talked about the mechanics of ALS—weak muscles, a funny-sounding voice, lots of things I can’t do—only recently has he branched out to related topics. And, until now, we hadn’t touched on death.

He has asked whether our friend Jim and I are the only ones who have ALS. (“No, there are lots and lots of people with ALS.”) He has asked how I know I have ALS.  (“I went to see special doctors over and over and had a whole bunch of tests done to see why my muscles aren’t working right. They figured out I have ALS.”) He has asked whether I had ALS when I was a little girl. (“Nope, I was healthy and strong like you. I could play tag and jump off the deck and ride bikes and sing like you, and I could do cartwheels like Emily and play baseball like Nick.” He raised his eyebrows, impressed that I could do cartwheels.) He has asked how I got ALS. (“We don't know. Nobody knows. Lots of very smart people are trying to figure that out.”) He has asked whether ALS hurts. (“A little bit sometimes.” And more than you’ll ever know.)

But this...this is uncharted territory for us. I don’t even know how or when he learned that ALS is fatal. And once I answer, there’s no going back.

“Yes, honey, right now ALS always makes people die. But there are lots of very smart people who are working very hard every day to make some kind of medicine that will help people who have ALS get better.” I pause to let that much sink in.

He thinks about that for a moment. “But what if you are sitting on the couch and you die?”

Okay. “Listen, Zacky. This is very important for you to know: ALS doesn’t work like that. Yes, I have ALS, and yes, right now ALS ‘always makes people die.’ But ALS will not make me die tomorrow, or next week, or before our vacation or anytime soon.
 
And here’s what I really want you to know and remember: my ALS is going very sloooooooooooooooooooooooooooooooooo ooooooooooooooooooooooooooooooooooooooooooooow,” I say, dragging out the “slow” as long as I can until I run out of breath. Halfway through, he starts giggling; then, as my voice continues to hold longer and longer, his giggles become a full belly laugh. Good. If we can laugh about ALS, we’ll be okay.

“And remember,” I continue, “I can still do lots of things with you. We can play games and bake cookies together, we can go to the movies and the park, we can snuggle up and read a book together... We are lucky we can still do lots and lots of stuff together, right?” He nods vigorously. It’s true. We are incredibly lucky…even at the same time that we are incredibly unlucky.

In the kitchen, my cell phone buzzes, triggering another round of questions.

“What if you die, and someone calls your cell phone, Mommy? Who will answer it?” Zacky asks.

“Well, if I—”

 “And what if you die, and Daddy still has to go to work?” he continues. “Who will take care of me?”

Okay. Forget the cell phone.

He rubs and rubs his eyes with little balled fists. I pull him closer, murmuring some soothing sounds as I kiss his hair and try to swallow past the lump in my throat.

He pulls away a bit as he keeps rubbing. “It’s okay, Mom,” he protests. “I'm not crying. Some water is just coming in my eyes.”

And now some water is coming in my eyes. I pull in a deep breath and focus on Argentina on the world map hanging on the wall beside my chair. If I concentrate hard enough on Argentina, maybe I’ll forget to cry. Argentina. Argentina. Argentina.

“Oh, honey,” I whisper. “You have sooo many people who love you sooo much. You will always have people who love you who will help take care of you. Grandma and Pop. Aunt Kelly and Aunt Kris—”

“And Aunt ‘Née? And Aunt Kimberwy?” he asks in his sweet little voice, where l’s are still pronounced as w’s and syllables sometimes get dropped. How can such a little boy, a boy whose speech skills are still developing, have such heartbreakingly advanced questions?

“Yes, and all of your uncles, and our friends and neighbors…lots and lots of people will help and will make sure you are safe and happy. They will make sure you do your homework, if you are in school and you have any; they will make sure you get good food to eat; they will make sure you have lots of fun and play outside; and they will make sure you get to bed on time. And they will take very, very good care of you always. And Nick and Em will help, too.”

“But what if they forget, and I get left at home all alone?” Zacky persists.

“Has that happened to you before? Have you ever been left home alone?” I ask.

“No,” he admits.

“And it won’t happen,” I state emphatically. “Our family and friends will make sure that never happens, and I know they will take very good care of you.

“But right now, that’s still my job, and I hope it will be for a long time. Because do you remember what I said about my ALS?”

“It’s going slow?” he guesses.

“No. It’s going slooooooooooooooooooooooooooooooooooo oooooooooooooooooooooooooooooooooooow,” I remind him, to renewed giggles. “And I will tell you that every day if you want me to,” I add.

“No, you don’t have to,” he says. “Mommy, I think I’m feeling better now. Can I watch some tee-vwee?”

As I flip on the TV, I let out a long breath.

He moves on to his favorite show, but I can’t shift gears so quickly. I'm frustrated at my failure to control the message for him, the way we did for Nick and Em. How did he learn ALS is fatal?

With them, we were able to share the full scope of ALS more gradually, doling out facts bit by bit in answer to increasingly sophisticated questions. And really, now that I think about it, that’s what’s happening here with Zacky. It’s just culminating in the whole story coming out much earlier.  

It's one of the disadvantages of the age disparity—that the youngest grows up faster, even as I try my hardest to keep him my baby. (It weighs much more heavily when we’re talking about ALS, though, versus Zacky’s prodigious skills at Star Wars Lego on the PlayStation.)

But as much as I would have preferred to wait to have this conversation, Zacky seems to have bounced back fairly well. He sings along to the “Franklin” theme song: “Hey, it’s Franklin/Coming over to play…Growing a little/Every day…”