A Day in the Life...

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Part One: My Morning Routine

8:05 a.m. I open my eyes and strain to see the clock on the nightstand: 8:05 a.m. I drop my head back onto the pillow and close my eyes, my mind grasping at the dream that lies just beyond its reach. It was a good dream. I can’t quite recall it, but I’m left with a vaguely good mood. Gotta love a day that starts on a pleasant note!

 

I slowly stretch my limbs, then squeeze and release my fists. Wimpy. Pathetic. The first sign that—despite my pleasant dreams—my body is still succumbing to the inevitable death march that is ALS. I squeeze my fingers as hard as I can. My fingernails should be digging into my palms, leaving little crescent-shaped indentations in my skin. But when I open my fist, the skin remains smooth and unblemished. I can’t even grip a pen first thing in the morning.

 

Well, I tell myself, good thing I don’t have to! I force my mind to retrace its steps, backing up to the hazy, happy feeling from the elusive dream. There, that’s better. I clumsily jam an extra pillow behind my shoulders to prop myself up a bit. I’ll spend the next half hour trying to distract myself from ALS with the newspaper while I pump some caffeine into my tired veins. I smile at the thought of Jim carefully placing my travel mug of coffee and the newspaper on my nightstand, sports section on top. He knows this is the worst part of my day—physically and, consequently, mentally—and he does everything in his power to make sure my day gets off to a good start.

 

8:30 a.m. I raise myself up on my elbows, twisting to my left while I reach back with my right hand and push against the bed with all my might. I twist to the right, and use my left hand to push off, alternating sides as I try to scoot my behind back near the pillows while I raise my torso the rest of the way to sitting. One at a time, I slide my heavy legs to the edge of the bed and let them drop overboard. Rocking back to gain a bit of momentum, I push off the edge of the bed—not too hard, or I’ll go over on my face!—and straighten up slooowly, groaning. I imagine this is what it feels like to be 85. I’ll never know.

 

8:35 a.m. I grope my way across the room into the bathroom, where I’m greeted by my grab bars on either side of the toilet. I resent their gleaming presence in my bathroom—can’t I get a moment of privacy here?—but in a minute I’ll be grateful when I’m not trapped on the toilet all day.

 

8:40 a.m. I turn on the hot water in the shower and head back to the bed to disentangle myself from my pajamas. I have to sit on the edge of the bed to extricate each leg from my garments one by one. Dropping and stepping out of them would surely be more efficient, but I can’t stand on one foot long enough to lift the other high enough to escape the puddle of fabric on the ground. It’s hard to believe, and I’ve tried this shortcut several times; however, after finding myself toppling before I can get my foot back down, I’ve conceded this one. (Sometimes I persist in trying to do things the “old” way on principle; I just don’t want to give up ground to ALS. But this particular battle is a losing one and not worth bashing my face on the cold, hard tiles of the bathroom floor.)

 

Next comes the first big test for my arms: raising them over my head while lifting off my top. I can gauge a lot about my day from how well this goes. Up, up, up…and I’m out of my shirt in one try; today’s a good day.

 

8:43 a.m. Remember the shower scene in “Psycho” (or, if you haven’t seen that, substitute any horror movie shower scene)? I feel that grip of terror in the pit of my stomach every time I approach the shower. Not because I fear some murderous psychopath lurking nearby, but because I can’t know when the combination of balance and strength required to keep my body upright will become too great. Will it be today? I briefly visualize myself in a puddle of blood on the bathroom floor and wonder how long it would take before the kids got hungry and came looking for me. Since they can fix breakfast for themselves, it probably wouldn’t be until lunchtime. Well, I resolve, it won’t happen today.

 

Once in the shower, I tip  my head back slowly—not too far, because there’s a point not far back where my neck strength gives out and I’ll drop to my knees in severe pain if I reach that point—and allow the water to cascade over my hair. I pump some shampoo into my hand and reach up to wash my hair. When my arms are on the verge of collapse I allow them to dangle uselessly at my sides. One, two, three…I count out a break of about 15 seconds and get back to work. Repeating this pattern several times, I finally have clean and rinsed hair. My arms feel like they will fall off; however, without any more work above my head, they’ll recover.

 

After the uneventful work of washing my face and body, I’m ready to tackle the frightening prospect of shaving my legs. Not for the first time I curse being a woman ALS patient. Marty and Jim don’t have to shave their legs, I grimace. I prop my right foot on the ledge and wedge myself against the shower wall. Now, the trick is to lather up and shave before my slippery left foot slides out from under me.

 

Damn—cramp! I hastily (for me) move my right foot back down to the shower floor just as my left is about to give way. I stretch my left hamstring until the cramp subsides and gingerly resume my precarious position. My right leg responds by pulsating up and down like a jackhammer. Stupid fasciculations. But at least these muscle twitches don’t hurt like the cramps do. I lift and replace my right leg on the ledge. Without further incident, I finish my right leg and switch my stance to start on my left. Slow going, but I’m almost done when an unexpected voice startles me and I fling the razor over my shoulder. Stupid hyper-reflexivity.

 

“Mom? Can we watch some TV?” Emily asks, oblivious to my panic.

 

“Uh, sure,” I reply, stooping to retrieve the pieces of my razor. One irony of ALS is that while my voluntary muscle movements become progressively weaker, my reflex reactions—involuntary muscle movements—are so strong they’ve spun totally out of control. My exaggerated startle reflex has led me to drop dishes, fall off a chair, and jam a mascara wand in my eye. Another issue I’m sure Marty and Jim haven’t faced, I harrumph, but I do grin at the thought of Marty in mascara.

 

 I reassemble the razor’s handle and blade and resume my position and this endless task yet again. It’s become a race to finish before my legs give out. By the time I’m done, I’m wiped out. I turn off the water and reach for my towel. I step carefully out of the shower, exaggerating the lift of each foot to make sure I clear the shower door track. I dry off and grab my wrap, then head back to the bed. I have to rest before tackling Phase Two of the getting-ready process.

 

9:08 a.m. and I’m already out of the shower. Not bad, for me. There are lots of days when I don’t even make it into the shower until 10:00 a.m. or later. I can’t believe there was ever a time in my life when I caught 6:00 a.m. flights out of O’Hare. Did I really run through the airport dragging my wheelie suitcase in my wake, my overstuffed briefcase flopping off my hip? In high heels? Way back in my memory, I can barely recall what that felt like. Sigh. I lose myself in memories of a different life.

 

9:22 a.m. I get to my feet and make my way back to the bathroom where I finally get started on the second leg of the morning triathlon (Hair and Makeup). I can’t blow all my energy here, though. Gotta keep some in reserve for the big finish: Getting Dressed.

 

I plug in the hair dryer and pull my brush out of the drawer. This will be quick. I don’t have any big plans today; no sense wasting my energy on a fabulous hairdo no one will see! I aim the warm air at the hair that frames my face, and half-heartedly curl the ends of my hair around the brush. A few minutes are all I can muster. Good enough. I turn the dryer off, clip the front of my hair up off my face with a small claw, and reach for my toothbrush.

 

Ugh. I can already feel my tension mount in anticipation of this dreadful hygiene task. Gagging, clenching, abdominal muscles cramping—as usual, brushing my teeth leaves me in a sweat. I’ll spare you the graphic details, but trust me: this part of my day is not pretty. And the abdominal cramps hurt.

 

Mercifully finished with my dental routine, I retreat to the bench by the mirror out in the bedroom. I plop heavily and am dismayed to notice the beginnings of a second chin immediately behind the first. I stretch my neck until that ugly newcomer disappears.

 

I quickly (for me) pat on some foundation, then powder lightly. A coat of sheer lip gloss, and I’m done. Good enough for today. (I want to move on quickly before that chin returns!)

 

9:34 a.m. I stand in my closet, staring at my “fat” clothes. After my third pregnancy, I never wanted to see these sizes in my closet again. But there’s not a lot I can do to burn calories when mere walking trips me up! I grab some knit capri pants and a white v-neck top.

 

Back on the bed, I bend forward far enough to hold the waist of my pants low enough to lift my foot into—without leaning so far forward I fall off the bed. Ah, I can’t quite reach. But I can’t just go without pants, either. In desperation, I fling the waistband forward to loop it over my toe. There. My right foot is in, and I lean back, lifting my leg until the pants slide up near my knee to where I can reach them. Lying on my back on the bed, I bend my left leg and thrust my foot into the pants. I swing both legs down hard and fast (for me), creating enough momentum to rock me back to upright…almost. I rock back and forward again, this time with enough to get me past the tipping point. I hike the pants the rest of the way up and fumble to tie the drawstring at the waist. Done. I plop back onto the bed.

 

I can’t reach behind my back without my arms cramping long enough to fasten a bra, so I’m back to the pre-teen approach: fasten it around my waist, spin it, and slide it up. The indignity of this…is much less than it will be to have someone else dress me, I think glumly. I push that thought firmly where it belongs—into the future—and pull my top over my head.

 

I check around the room for anything I may need during the day downstairs. Once I’m down, I don’t come back up until bedtime. Tucking the paper under my elbow, I finally begin my descent.

 

9:52 a.m. and I’m downstairs. Not exactly a world record, but pretty good for me. Is it sad that I feel such a sense of accomplishment over making it downstairs before noon?  I wonder.

 

No, I decide. It’s a wonderful thing that I can still make it downstairs. Period.

 

Part Two: Waffles and Target
 

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, right?

 

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?” he asks.

 

“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?” he asks.

 

“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 day!

 

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 here today.”

 

“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 their words?

 

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 to.

 

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 board.

 

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 do it.]

 

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 mind.

 

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 fading fast.

 

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.

 

“Yep.”

 

“Well, Lou Gehrig was 37 when he died.”

 

“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 for home.

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