9:54 a.m. After briefly checking on the kids, I arrive in the kitchen
to the scattered remnants of breakfast: Lucky Charms strewn on the floor (just the cereal, of course, not one wasted marshmallow
piece!), two bowls with a few bloated cereal pieces floating in milk, two empty cups, the cereal box, and several wadded up
napkins on the table. Amazingly, the milk seems to have made it back into the fridge.
I pour a new cup of coffee and start
my slowpoke method of tidying up the kitchen. I slide all the dishes to one end of the table, and, standing in one place,
I turn at the waist to move items from the table to the counter. Next, I walk around the end of the counter and position myself
between the dirty dishes and the sink. Again, standing rooted, I move the cups and bowls into the sink. With my unsteady gait,
this approach limits the amount of sticky milk I slosh onto the floor. Whatever works,
After loading the dishes into the
dishwasher, I throw the napkins away in the garbage can I have come to adore—for
the fact that it doesn’t have a foot-pedal-controlled lid. (Despite glossy
ads that promise “easy access” and “convenient hands-free operation,” the foot-pedal technology is
extremely dangerous for the balance-impaired.) I love my can’s magnetic lid!
I scrub the counters and grab the
broom and dustpan to sweep up the debris under the table. As I’m emptying the dustpan into the garbage, Nick wanders
into the kitchen, still in pajamas.
“Can I have some breakfast?”
“Sure,” I answer, sneaking
a guilty peek at the microwave clock. 10:16 a.m. I wonder how many other kids are just now eating breakfast? Well, I’m doing the best I can, I tell myself. If he were starving,
he could have gotten some cereal with Emily and Zachary.
“Can I have waffles?”
“Coming right up!”
I pop three waffles into the toaster
and get the butter, syrup, and a plate ready. I grab a glass out of the cabinet, pull the milk out of the fridge, and pour
it without spilling a drop. Hooray—more evidence that this is, indeed, a good
10:18 a.m. I’m glancing nervously at the toaster. Any second…any second now… I’m trying to prepare myself. Even though I know it’s going
to pop, the actual moment it does pop will trigger my hyperactive startle reflex.
As I wait, I instinctively start to reach for a Cutco knife for the waffles (gotta use a ridiculously sharp knife for everything
now), but stop when I realize the toaster still hasn’t popped. Stupid. I
shake my head at my near-miss.
POP! I jump, as expected. But with
empty hands, my over-reaction is harmless.
Now I carefully pull the knife from the block and get a fork out
of the drawer. I butter the waffles, then grip the knife tightly and exert all my wrist strength to cut through them. Hmm…another
event for “Survivor: ALS.” Haven’t heard of it? No, of course not. It’s my imaginary version
of the reality TV franchise that I have yet to pitch to Mark Burnett.
Truth be told, I’m hooked
on his show (I know, I know—but even I need my guilty pleasures!), and I find myself especially riveted by the physical
challenges. Perhaps I’m living vicariously through the contestants’ feats, imagining what it would feel like to
complete these tasks of exertion and endurance that are so far beyond my reach now.
Anyway, it’s become a running
commentary in my head, adding ideas to the unwritten list for my ALS version of “Survivor.” Instead of eating
bugs, we could line up all of our pills and supplements and race to swallow them successfully. (Trust me—this is much
tougher than it sounds.) Another event would require us to race to untie 10 pairs of double-knotted tennis shoes, using only
a nail file to aid us in prying apart those pesky knots.
In a test of endurance, we would
sit in wheelchairs without footrests (the kind I too frequently am offered when I consent to riding), and with our caregivers
pushing us, exert all of our leg strength to try to keep our feet up off the ground the longest.
But right now, I’m amusing
myself with my latest immunity challenge idea: I’m visualizing a series of plates starting with something easy like
Jell-o, and serving up progressively tougher and tougher foods to cut through—with
the final platter holding an entire turkey that must be carved!
Okay, maybe not. Anyway.
“There you go, kiddo,”
I say, setting the plate on the counter by the glass of milk. Nick moves them to the table and I sit beside him with my cup
of coffee, a notepad and a pencil.
“What’re you doing?”
Nick asks through a mouthful of waffles.
“Don’t talk with your
mouth full,” I reply automatically, then answer, “I’m making a to-do list of what I need to get done around
“Oh.” Nick perks up.
“Did you put ‘go to Target to look for Pokémon cards’ on your list?”
Emily overhears the word ‘Pokémon’
and appears instantaneously. “Yeah, Mom, don’t you remember you said we could go to Target today and get some
Pokémon cards with our own money? Yesterday you said we could go if we cleaned our rooms, and we did,” she frowns, as
if she expects me to renege.
Damn. I forgot about the Target brib—I mean, deal. But they
are definitely right; I did make that deal.
“I’m juuust writing that down now,” I say, as if it had already been on my mind. “But before we get to
that, I need to do a little cleaning up, and we need to have lunch.”
Lunch, right. Nick’s still finishing breakfast. We have gotten
so far off schedule this summer! I am ashamed at my inability to get moving earlier
and get more done.
11:30 a.m. Okay, the kids are cleaned up, their teeth are brushed,
they’re dressed, and they are itching to head out. Lunch can wait.
So, it looks like I am going somewhere today after all. I make a quick trip to the powder room mirror to confirm what I already know—ick! This is definitely not my “fairest-of-them-all” look.
Why does it matter? With the clock
ticking on a terminal illness, do I really have time for vanity? Shouldn’t my energy be focused on something besides
hair and make-up?
But actually, appearance matters
a lot—especially now. People make judgments about how others look all the time. You’ve done it, I’ve done
it. And it seems like I’m always reading about some new study that says tall people or blonde people or thin people
(or tall, blonde, thin people!) make more money than their less-attractive counterparts at the same point on their career
path. Wonder how they’d compare to heavy red-heads who limp and lurch and slur
Whether the studies are accurate
or not, I know I gain confidence when I feel good about how I look. And now that my awkward gait and slurred speech call unwanted
and decidedly negative attention to me, I really
want to counter any preconceptions by looking my best.
Here’s the thing: It’s
hard for me to get up my nerve to ask a salesperson for help. Just knowing they’ll hear the slow, nasal, garbled voice
I detest, knowing that they’ll see the oddly exaggerated strain of my throat and jaw muscles working so hard to project
that ugly voice…well, it’s hard to set myself up for the inevitable shrinking away or outright rejection. Indeed,
the reactions I’ve gotten when I have broken down and asked for help only
serve to reinforce the notion that appearance matters waaay more than we want it
But if I can give a bright smile
and feel like my clothes and hair project a reasonably attractive 30-year-older—er,
fine, 36-year-old!—I feel much more confident about seeking assistance. And I’m much more likely to be met
with a caring, if curious, response.
So, it’s back to the drawing
12:10 p.m. Hair? Check. Make-up? Check. Cute clothes (well, as
cute as they get in these sizes)? Check. Cane? Check. Pre-written check (all but the amount) so I don’t suffer the performance
anxiety I always feel at the checkout counter? Check. (No pun intended.)
Okay, we’re off!
The older kids hop into the van,
rapidly discussing names of Pokémon cards they are hoping to find in the new packs. I follow Zachary around the van, let him
climb up into his car seat, and strain to fasten the 5-point harness.
With Zachary safely situated, I
turn my attention to getting myself into the van. I open the driver’s door, grasp the door frame and the armrest in
the door, and swing my right leg like a pendulum. On the third swing, I’ve gained enough momentum to swing my foot up
and onto the floor of the van. Once one foot is in, it’s smooth sailing!
[Lest you fear encountering me on
the road, let me assure you that: 1) my doctor has cleared me to continue driving; 2) driving requires very little of the
muscles that cause me the most trouble—the fine motor groups of my hands, and the quads and hamstrings that allow me
to lift my feet high off the ground or push up from a squat; 3) driving requires excellent reflexes, and thankfully, I still
have those, in spades; 4) being seated while driving eliminates any concern about my greatest weakness—my loss of balance.
Still not comfortable? Look around
this website. It’s pretty apparent I love my kids, right? I would never put them at risk. Jim would never put them at
risk. If one of us had even the slightest doubt about my driving, I wouldn’t
12:30 p.m. In the Target parking lot, I carefully park in the farthest
of the disabled parking spaces. I’ve given in to the idea that I can conserve my strength by taking advantage of one
of the few perks that come with ALS: a disabled parking placard. (Lucky me.) But, just in case there are people out shopping
today who are more disabled than I am, I leave the closer spaces for them.
I grab a cart out of the nearby
cart-return stall, and push it right up alongside the van. The only way I take
Zachary anywhere these days is if I can move him straight from the van into a cart or stroller. I cannot risk him getting
loose in a parking lot. I shudder at a particularly frightening memory, then slam the door firmly shut on that part of my
Here’s the toughest thing
about driving: pinching the release buttons on Zachary’s carseat belts. I finally manage to disentangle him, squeezing
with all my might with as many overlapping fingers as can fit on the buttons, and he rewards me with a huge smile. “You
did it, Mommy!” he beams.
The older kids leap out of the van
and stick close to me as we cross into the store. We made it!
12:55 p.m. Where are the
damn Pokémon cards? More than ever, I cannot stand stores that rotate
their product placement, forcing you to cruise through more aisles in the hopes you’ll see something you can’t
live without. This is surely a violation of the Americans with Disabilities Act, I
grumble to myself.
So far, we’ve broken down
and asked two salespeople about the new location of the trading cards, but all we’ve gotten are vague non-answers. So
we’re left to search on our own.
Briefly giving up on the Pokémon
cards, I remind the kids that they will need new backpacks for school. We head over to the back-to-school displays, and I
am drawn in by the crisp, new notebooks and folders, the dizzying assortment of pens, the magnets, the mini dry-erase boards,
and other locker tchotchkes. I love the promise of a new school year!
While the kids dig through the backpacks,
I lean heavily on the cart. It’s easier for me to keep moving than to stand around. Zachary pushes my arm to try to
remove me from his personal space. Good luck with that, kid.
1:20 p.m. Having selected backpacks, an array of pencils they just
had to have, and some folders to organize the mounds of paperwork a new school
year brings, we’re back on the trail of the Pokémon cards. We’ve circled the entire store. And my strength is
1:25 p.m. Aha! We finally stumble upon the elusive cards, tucked
into the corner of an obscure shelf in the summer overstock aisle. As the kids flip eagerly through the packs, I glance around
for somewhere to sit.
Wouldn’t it be nice if there were chairs sprinkled liberally through the store, every few aisles? Right. Most people coming into Target are intent on getting out again as quickly as
possible. Not me, though. I’d love to sit and relax for a few minutes.
I briefly consider the feasibility
of carrying a folding chair-in-a-bag on my back everywhere I go, so I can pull it out and sit down at a moment’s notice…then
shudder as I realize the implications of this daydream. The dreaded walker. For all intents and purposes, that’s what
I’m describing—a portable seat that would go everywhere with me.
I picture my late grandmother, her
fluffy white hair, her tissue-paper-thin skin, her stooped form hunched over her walker. I can’t come to grips with
this yet, can’t shake this image of a walker—a veritable nursing home on wheels.
A cane I can handle. I joke around,
flip it up to play air guitar, playfully jab at Jim as if to trip him, pretend I’m going to launch it like a javelin.
I’ve even thrust it between closing elevator doors to much applause from the bystanders who were distressed at the possibility
of having to wait another three minutes for an empty elevator car.
But a walker?
Am I ready for a walker? Physically,
there’s no question. Mentally? I hear Jack Nicholson’s voice echoing in my head: “You can’t handle the truth!”
I take a deep breath and straighten
up to my full height.
“Okay, kids, we need to get
a move on. Pick whichever packs you’re getting, put the other ones back, and let’s go.” Fast.
1:37 p.m. We arrive at the checkout lane, and with my pre-written
check, I’m ready to go. The cashier scans the items, gives me the total, and takes my check and driver’s license.
She studies my license briefly,
and comments, “You have a birthday coming up!”
“Yep!” I smile.
“I do, too. Mine’s 20
days after yours!” she says.
I nod politely. Oh, I hate chit-chat! I silently protest. It exposes my icky speech!
“I hate birthdays!” she continues, as she waits for the cash register to churn out my receipt. “Don’t
you just hate birthdays?”
I smile wryly. “Oh no, not
at all—I’m just glad I’m still having them! It’s so much
better than the alternative,” I reply, slurred speech and all.
She’s nonplussed by my response.
(Or by my voice—I never can tell.)
As we exit the store, I think about
my upcoming birthday and my thoughts drift to a recent conversation with Nick.
“Mom, you’re going to
be 37, right?” he had asked.
“Well, Lou Gehrig was 37 when
“Yes, he was,” I had
struggled to hide a very inappropriate smile. Stupid, stupid pseudo-bulbar affect!
Why do you make me smile and laugh when I least feel like smiling or laughing? Something like 90 percent of our communication
is non-verbal, yet my facial expressions cannot be trusted to express my true emotions. With ALS, my words are all you can trust. “Do you think I might—”
“Die?” he had finished
tentatively, searching my face for any hint of pain. He has many questions, but is hesitant about asking them for fear of
hurting my feelings. “I just wondered... if he was 37 when he died, maybe you would die when you’re 37, too.”
“Well, I could. But that’s
not very likely. So far, I’ve been very lucky that my ALS seems to be moving pretty slowly. I can’t promise you
I won’t die in the next year, because I could be in a car accident or something like that.” I had looked straight
into his clear, blue eyes. “But I won’t die from ALS in the next year.”
It had been a little risky to make
such a definitive statement, but I will fight with everything I’ve got to make sure it holds true.
1:48 p.m. I load the bags and the kids
into the van, expertly swing my foot up onto the floor of the driver’s seat, clamber the rest of the way in, and head