His sister, Marina, has the ginormous distraction of boys and friends and fashion and high school.
And then there’s my Aubrey. The middle one. Squashed between his special-needs brother and a teenage sister who currently regards him as a sixty-five-pound pain in the ass. My most sensitive and sentient child.
At his parent-teacher conference this year, his teacher told me: “Aubrey’s an old soul.” Which broke my heart. For old souls are wiser souls. Wise to what’s going on around them.
Indeed, Aubrey was the first (and so far only) of my children to ask directly about my condition.
Aubrey was the first to offer to help me without prompting. When my walking began to falter, he would step beside me so I could put my hand on his neck for balance.
He checks on me often, popping his head out our back door, hollering to me parked out in the Chickee hut writing, “You okay, Mom?”
Perhaps this is his old soul. Or perhaps it is the fact he’s seen me in some pretty pitiful states.
Like the time, a few weeks after I got back from the Yukon, I went to pick him up from school. A new opportunity I treasured since leaving work. I was early that day, so I went inside to use the bathroom. I was walking down a little-used hallway when I slipped and fell, ker-plunk, flat on my back.
I wriggled like a beetle, unable to get up. Wondering what to do.
Then Aubrey and another boy happened to walk by.
“Mom!” he said, running to my side, but not before glancing at the other boy to see if he was watching.
For the first time, I felt my condition embarrassed my son.
The other boy walked off, and Aubrey started trying to hoist me up, grabbing me under the armpits, tugging me toward my feet.
“Whoa, Nellie! Slow down,” I said. “Let me catch my breath.”
His hazel eyes were flung wide. “Don’t worry,” I said. “I am fine. Ready?”
He tried again and nearly toppled over. I laughed, so he started too.
“Okay. Help me turn over on all fours and crawl to the door. I can grab the door handle.”
When I reached the door, I directed him to grab the top of the back of my pants and pull. “It’s okay. Give me a big wedgie!”
It worked. I got up. I went to the bathroom and walked out of school with my son by my side, my arm draped around his neck for balance.
A few days later, as I exited school with Aubrey, some woman walked up to me and blurted out, “What happened to you?”
If Aubrey had been not been standing there, I would have replied, “What happened to your face?”
Because it hurt. How must I look, I wondered, if that woman spoke to me like that?
Soon after, I sat down and wrote an e-mail to Aubrey’s and Wesley’s teachers. I knew they had seen me stumble and slur. I didn’t want them to misunderstand. I told them I didn’t have a drinking problem. I had a disease.
Then I stopped picking my kids up from school. Dad took over. One more favor asked. One more thing I couldn’t do.
One thing I never thought I’d miss so much.
Now, six months later, I worried I was disappointing Aubrey again.
I have always made a big to-do about birthdays. I buy two or three colors of streamers, and the night before John and I string them from the center chandelier to all corners of our Florida room—the tropical equivalent of a den. The child awakes to a canopy of color.
This year, I could no longer zip myself over to Party City. And I forgot to remind John.
Aubrey awoke to the same old house.
Then there was the cake. I always bought special cakes, covered in silky fondant or glazed in ganache. Or made my own, not nearly as fancy, but not for lack of effort.
Last year, I got out my Wilton icing tips and icing bags and piped a fancy trim on a homemade cake.
Aubrey’s party was at a local water park in full Florida sun. By lunchtime, the piping was dripping off the cake like sweat. Aubrey and the gaggle of ten-year-olds ended up ravaging it with spoons.
This year, I couldn’t manage a cake. So Steph stepped in and took Aubrey to the grocery store. He chose a Smurf cake. Yes, Smurfs. A bastion of blue icing. Stephanie made him a steak dinner as I napped with Gracie.
In the evening, we gathered for cake and presents. A few days before, I had upgraded to another iPhone and wrapped up my old one for Aubrey. Marina had gotten a new phone for her eleventh birthday, some cheapo model. I reasoned old was okay, since Aubrey was getting a much nicer phone than his sister had.
We sang “Happy Birthday” and ate blue cake, the liter of dye leaving everyone looking cyanotic with blue lips.
Aubrey opened the phone, in its original packing box. He loved it. Immediately began plugging in everyone’s numbers and texting away.
Hmmm. Still no complaints? Perhaps I was the only one who missed traditions so.
About an hour later, Aubrey came to me in the Chickee hut. “Look, there’s a scratch. Is this your old phone?”
“Yes.”
“Marina didn’t get a used phone!”
“Marina didn’t get an iPhone. Quit complaining.”
He sauntered off into the house and texted me: “Thank you.”
The next day, while at a friend’s house, he texted me: “Are you ok?”
“Yes,” I replied.
Then he texted me symbols. “Eye-heart-u.”
“Eye-heart-u too my son.”
Helping Hands
Sweet Gracie, our gold-eyed girl.
While my children, thankfully, went on with their normal lives, my dog knew something was wrong with me. She grew more and more antsy through my long period of nesting that spring, until she finally ate the strap off my bikini top. She had chewed shoes before (preferring the supple Italian leather ones), but not clothing.
I used to place my breast-milk-stained shirt in the crib with my babies. The scent seemed to comfort them. I wondered if Gracie chewing my clothing might be the same thing.
No bother. I did not miss the bathing suit.
I chose to appreciate the gesture. For Gracie, and her antics, comforted me. She was often my sole companion in the Chickee hut, usually curled at my feet. Or chasing lizards and jumping at squirrels, which was just as nice.
When I napped in the afternoon, she hopped on the bed and licked my face. I know. Gross. But I loved it.
Sometimes she curled around my head on the pillow, her long tongue slinking down the sides of my face. More often, she plopped down atop my chest for a full frontal lick-fest.
Thwack! Thwack! pounded her tail on the mattress as she licked, no end in sight, her sixty pounds making it hard for me to breathe.
“Help!” I’d called out, and as I opened my mouth, in darted her tongue.
Eeeeewwwww! Gross! Even I have standards.
Once, in her excitement, Gracie moved up for a better lick and put her paw on my throat. Now I really couldn’t breathe, and I was too weak to push her off.
“Help!” I squeaked. “Help!”
Aubrey tottered in. “Gracie! You killin’ Mommy?” he said, tugging her off me by her collar.
He exited the room to return to his regularly scheduled activity. Gracie hopped right back on the bed.
“Off! Off!” I told her, before giving up and letting the dog lie.
Early each evening, usually before bedtime for the children, John walks me step by step to our bedroom.
He takes off my clothing piece by piece.
He puts me on the toilet.
Brushes my teeth.
Lays me in the bed.
“Is there anything else you need?”
“Just bring in Gracie,” I tell him.
She hops on the bed with me. She curls around the pillow and slinks her tongue across my face. I think of Wesley, and how she doe
s the same for him. She puts us both to sleep.
Once, in the middle of the night, I awoke alone in the guest room at the north end of our house, far away from the other bedrooms.
I had to use the bathroom, but needed help to get out of bed. I called out in the darkness: “Hello! Hello!”
No response.
I waited for our noisy air conditioner to cycle off and tried again. “Hello! Hello!” I called out, my weak voice rising with the pressure in my bladder.
No response. No one awoke.
“Hello! Hello! Help! Help!”
In came Gracie, probably from Wesley’s bed. She looked at me, head cocked quizzically. Then began barking loudly, right outside Marina’s bedroom door.
Marina awoke and got John to help me.
“Just like Lassie!” I said on the toilet.
She started following me, underfoot at the most inopportune moments, like when John helped me to the bathroom.
“Hurry! Hurry!” I said, trying to avoid an accident.
And there was Gracie, right in the way, scampering into the tiny bathroom alongside the two of us.
“Gracie! Out!” John hollered, annoyed.
On various occasions, our sixty-pound girl has nearly knocked me over, jumping on me or sideswiping me while I tried to stand.
“We should get rid of the dog,” John said one day in anger.
“Over my dead body,” I replied.
Gracie goes nuts when the kids jump in the pool, barking, leaping into trees, tugging off the bark. We had to wrap some trunks in chicken wire.
But Gracie never ever jumps in the pool—except once.
John was giving Aubrey a whale ride, our name for Aubrey clinging to his back while John swims deep underwater. The two stayed under the water, gliding along the bottom, an unusually long time. Gracie musta thought they were drowning.
She jumped in and swam toward them.
Then John and Aubrey surfaced, and Gracie climbed right out.
Lassie!
Poor John. Parent. Caregiver. Dog walker. Tired soul. Each morn, he wipes paw prints off our upholstery, muttering about the damn dog.
I’ve heard of husbands emotionally abandoning their sick wives. Not John. I think he feels my pain as much as I do, my frustration at all the little things I cannot do. Things like pulling myself up from a toilet or lifting my own feet.
Now John has to do them for me.
He has help. Believe me, when you can’t put on your own shoes, you aren’t shy about asking for assistance. My friend Jane Smith, who planned my retirement party from the Post and bought my iPad, set up an entire schedule of helpers on WhatFriendsDo.com.
But sometimes, like with Gracie, that help made it harder on John. There were friends in and out of the house all day—running errands, bringing meals—but I had trouble communicating my wishes, or even thanking them.
I couldn’t get out of my chair, for one thing. Fortunately, we have an open-door policy. We’ve always been one of those houses where the door is unlocked all day and neighborhood kids, relatives, and do-gooders just walk right in.
Which was a blessing, since I was so often out in my backyard Chickee. And I couldn’t answer the door, even if I wanted to. Couldn’t turn the knob. Couldn’t really be social, even when people sat with me. Too hard with my lazy tongue. Too tiring.
I sent John out to buy a bunch of marsala cooking wine. I wanted to give my favorite recipe—Shrimp Onassis, which called for marsala—to each person who cooked for us.
“Here is the secret ingredient, marsala, which transforms the recipe. Just as your kindness has transformed this day for me,” I had John write in the thank-you notes.
It was hard on him. He was coming home from work and having to chase kids, greet edible gift–bringers (many of whom he’d never met), and hand them wine, when half the time he couldn’t locate it or remember what to write.
All while I was texting him I had to pee, so he needed to walk me to the bathroom . . . right now.
And Wesley, God love him, but he was TALKING LIKE THIS THE WHOLE TIME, and not having a conversation, just talking round and round about whatever was on his mind.
“Can I take a picture of Gracie? Do you like lizards? Did you see the book I drew? It’s the ugly duckling. See, he’s crying. But over here, his mom found him, and he’s happy now.”
Thank goodness for Yvette, our amazing housekeeper. Wesley loved Yvette. They could talk Piglet and Lilo & Stitch for hours. I think Wesley watched that movie ten times in a row.
Actually, it wasn’t the movie. It was the ad for the movie on the on-demand channel. He watched the ad a hundred times, until Stephanie rented the movie for him one night.
Delight.
Meanwhile, the food piled up. Everyone was so generous, bringing enough for eight. But Marina was often away with friends. Aubrey and Wesley were picky boys. And my appetite was down to half of what it once was, maybe less.
That left John. The man can eat, but not for seven and a half.
“Tell them thank you, but we’re fine for now,” John told me, when we discussed the frequent food drops.
“You say it,” I grumped. “I can barely talk.”
The frustration culminated in a meltdown. Of course I have them. My mind is untouched by ALS. I get furious sometimes.
Like when we didn’t have the proper wine bags to put the damn gift wines in.
John stopped chasing Gracie at that one and looked at me. “Did you miss your medication?”
At my first appointment with the neurologist, I had asked for an antidepressant. I was prescribed 10 mg of Lexapro a day, the smallest amount. After my diagnosis, the doctor doubled the dosage to 20 mg. We called it my “happy pill.”
“Yes,” I said, realizing what had happened.
Like Road Runner, John darted to the medicine cabinet.
He placed the chalky pill toward the back of my tongue. As usual, it stuck and dissolved there, gagging me. No muscle to push it down.
Bitter, then bitter again, swooshing back into my mouth. I gestured to John to bring the water cup close. Real close, where I could put my lips around the straw, no hands. The only way I could drink.
The only way to swallow the bitter pill that helps make me happy.
Recently I switched to liquid Lexapro, no longer able to swallow a pill. It’s no less bitter, but I would gargle garlic if it helped me feel better.
Is there a stigma to admitting depression? To admitting that I have moments of anger and despair? If so, I choose to ignore it, because my mind is healthy.
It is like running a marathon. Even trained, the marathon is grueling. But you can complete it.
Even on antidepressants, ALS is devastating. But I can complete it.
For the depression comes less frequently now. Since my diagnosis. Since acceptance. It swoops in like a butterfly, landing silently as they do on the bushes near the Chickee hut. I watch it flutter, admiring the complexity. I feel its weight for a moment, then it’s gone.
That kind of sadness has a beauty. It lets me know I am alive.
And that I still care.
Hospice
The months visiting my mother in the hospital never left me. The nights I spent lying awake in her room, looking, thinking, feeling. Watching as the nurses checked medication and vitals. Listening to the whirring of the IV drips, their alarms BB-RRRing-ing in the night. Smelling the feeding-tube liquid, a milky-looking substance with a scent all its own.
And it ain’t like pot roast.
Dad visited three or four times a day. He endured the brunt of Mom’s frustration and confusion. Her fear. At one juncture, Mom just shot birds at Dad, who had shown nothing but absolute care for her. She would not even watch TV.
Dad was so strained, I wondered when he would snap. Then he had to tackle end-of-li
fe issues, uncertain what Mom would want.
Those images, those moments, those smells, will stay with me forever. In the following months, I lived them over and over again. This was not the butterfly of depression, swooping down to my shoulder and then flying away. This was not self-pity.
What I saw in the hospital gave me a clear-eyed view of myself. It made me vow not to put my loved ones through the same. I did not want John to agonize over whether to cease medical intervention. I would not run my family into the ground with endless hospital stays.
If I had to die, I decided, I would die as gracefully as possible.
I talked and talked with John, making sure he understood my wishes. Chief among them that I never languish in a hospital.
Unlike my mother’s illness, there was no hope of recovery from ALS.
I had the necessary legal documents drawn up. No hospital. No ventilator. No artificial feeding. No measures to prolong life when at the hairy edge of death.
Easier for me.
Easier for my family.
Not giving up, but accepting.
And who knew better how to honor that spirit than hospice? Hospice services offer palliative care. They comfort the dying, instead of treating them.
“Sign me up!” I told John.
No, I’ll sign myself up while I still can, I thought. Better they shall hear my wishes in my own words, before I can talk no more.
I contacted Hospice of Palm Beach County. The hospice intake nurse came to our house. A friend took our children to the movies. Stephanie and her husband Don joined John and me. We opened a bottle of red wine.
“Am I doing the right thing?” I asked Steph and Don.
They are both respiratory therapists and have worked in hospitals. Don’s job was helping manage gravely ill people on life-support ventilators. He often saw families maintaining a loved one after realistic hope of recovery was gone.
“Absolutely,” Don told me. “You are doing the right thing.”
Stephanie had seen patients passing into death in the hospital. “The last place anyone should die,” she said.
Until I Say Good-Bye Page 19
