Four Times Around

Tommy holds two hands in the air. Two fingers on each hand are raised. He uses one hand to draw a circle in front of him, as if he were twirling a lasso. He draws that circle twice. His face shines with sweat and he is smiling.

“Four times around,” I say. “That’s two miles!”

He nods, “yes.”

My husband’s first attempt, to walk around the park for exercise instead of riding his bike, is a success. This shouldn’t surprise me; he used to be a runner.

“Half marathons,” he said back in 1996 when we first met. He was 61, muscled with no visible fat, divorced, and a bachelor for 15 years. I was 58, separated from my husband of 30 years, and on the lookout for a second.

Just a few months after our first hellos and a sweet romance, little by little, Tommy moved in with me. His exercise gear came first. Dozens of T-shirts, imprinted with running event logos, scooted my Gap T’s along the closet rod.

I relinquished one dresser drawer, then two, for his shorts, tank tops, and tube socks. And when his well-worn running shoes jumbled onto the closet floor, my high heels and sandals adjusted.

Once my divorce was final, Tommy and I married, and his workout stuff claimed permanent residency. Several years later he stopped running. Plantar fascia, or some other pain in the bottom of his foot ended it. To keep in shape, he switched to an elliptical machine at the local Y. And, when weather permitted, rode his Schwinn.

I’m happy to see my husband continue to be active today. He has Primary progressive aphasia (PPA), a degeneration of the frontal lobe of the brain that affects speech. In some cases, the illness impacts physical condition. Perhaps Tommy’s allegiance to fitness has deflected this symptom.

Because he communicates by gestures, nods, and words on note pads, when he rides his bike, I insist on him carrying his cellphone, notepad and golf-sized pencil. This way, if he were to have an accident, he could communicate to a passerby and get help.

I thought I was doing well protecting my husband, but a few nights ago, I changed my mind. Tommy and I happened to be undressing for bed at the same time. Usually, I turn in two hours before him. But because we returned home late from a Passover dinner, he joined me upstairs.

He pulled off his sweater and an old running event logo T-shirt he uses as an undershirt. When he started to shuck his slacks, I saw it. Tommy’s body, still slim as the day we met, now bore a black and blue bruise. It was imprinted on his left thigh and resembled a drawing of a map of Italy. Long, wide at one point, then narrowing.

“Tommy, what happened?” I asked. I ran my hand over the surface of the bruise, as if I were stroking a kitten. “Does it hurt?”

He shook his head “no.”

“When did this happen?” No answer. This bruise could’ve been on my husband’s thigh for days or weeks.

“Are you sure it doesn’t hurt? I’ll call the doctor in the morning,” I said.

A head shake, “no.”

“Did it happen at the Y? Did you fall off the elliptical?”

Another head shake.

“Did you fall off your bike?”

A nod, “yes.” Bingo.

“When?” I sat down on the edge of the bed.

He took a pad and pencil from his nightstand -- we have these all over the house -- and wrote, “2.”

“Two days ago? Why didn’t you tell me?”

A shrug as he replaced the pad and pencil.

To me, the bruise appeared to be more ominous then a tumble off a bike.

“Were you hit by a car?” My heart was pounding.

Head shake, “no.”

Before I could continue, he got into his side of the bed, turned his back to me, and pulled the covers over his head.

“Honey,” I said, loud enough to penetrate his shield. “You have to take a break from bike riding until that bruise heals.” I meant forever. “If you want exercise, how about walking around the park? Once around is half a mile.”

This day, when Tommy returned from the park and triumphantly acted out his lasso routine, I breathed easier. After all, how much trouble can a fat-free former runner, banned bicyclist, and current walker get into as he strides four times around?

Unpacking

My suitcase lies open and empty on the bed in our spare bedroom. Clothing, all black, to make wardrobe accessories easier, are in small stacks surrounding the bag.

It’s been a year since my last trip to Boston to see my daughter Faith, and it was 16 months ago when I travelled to the West Coast to visit my other daughter, Jill. There was a point I’d fly to either coast three times a year. Often enough, I figured, so my grandchildren would know me in the flesh, not merely as an iChat image.

“Honey,” was how my trips typically began with my husband. “I miss my kids.”

Tommy, a stepfather who believed three times a year was more than enough, would need coaxing. While I’d be content to shadow my family, he’d need a break from that togetherness. If the target was Boston, my husband would agree to join me because he liked the city’s easy public transport that allowed us to tour on our own.

L.A. was another story. “Sun, golf,” I’d offer.

“No, I’ll stay home and take care of the dog,” he’d say. I knew Tommy didn’t like the city’s sprawl, and since neither he nor I were brave enough to risk its roads in a rental, he hated being dependent on others for sightseeing.

But, the three-times-a-year timetable, and my husband’s voiced responses to any trips, dissolved after his condition worsened. Today, Tommy can barely get a word out, communicating with clues written on post-it notes.

“You’ve got to find some way to travel,” Jill had said. “It’s been over a year since you’ve been here. Look into home health agencies.”

I did, and was relieved when Tommy didn’t object to an aide taking over for me one day a week. With her in place, I started to make plans for a four-day trip to Los Angeles.

Along with the aide, I enlisted our dog walker/house sitter to sleep over for the nights I’d be gone. Because she’d be at her job during the day, I asked two of my cousins to take Tommy to lunch a few times. My ex-husband said he’d visit on one of Tommy’s unscheduled days. Neighbors volunteered to pop in and out. All were instructed to call me after their shifts, to let me know Tommy and the dog were okay, and to convey post-it note questions.

I was covered. I bought airline tickets. I placed the suitcase and black wardrobe on the bed, and added a bathing suit and sandals.

Several days before I was to fly ORD to LAX, I called my daughter. “I’m worried,” I said, “Tommy sometimes gags when he eats. I think it’s a side affect of his condition. Something about the part of the brain that screws up his speech messes with swallowing.”

“Mom, when did that start?” Jill asked.

I was embarrassed. “Actually, a few weeks ago,” I said. “When I see it happening, I tell him to take small bites, put the fork down between mouthfuls. But now...”

My daughter interrupted, “Mom, you can’t let him eat alone when you’re gone.”

I called the home health agency. “Can you send aides to monitor his mealtimes?” I asked.

“All set,” I told my daughter.

Then, I thought about it. I imagined Tommy confused in that whirlpool of caregivers. I worried -- even with all those overseers in place -- would one remind him to take his daily medications, especially the thyroid pills? Would another ask him to smile, as I do every morning, to be sure he’s inserted his dental bridge? Would another check the kitchen sink to make sure he’s turned off the faucets, and the front door to confirm he’s removed his keys from the lock? And would his meal companions be vigilant?

And what if he was frightened and wanted me home?

“Canceling,” I texted Jill.

“What happened?” she asked in the phone call that followed.

“I can’t leave him,” I said.

“I thought you had your team in place.”

“I don’t know what I was thinking,” I said. “He could never handle it.”

I could never handle it. I couldn’t relax in my bathing suit at poolside. I couldn’t enjoy my grandsons’ faces or antics. I couldn’t devour time with my daughter. My head would be back in Chicago, worrying about my husband. I’d startle at the ping of a text or ring of a cell, wondering if the news would calm or scare me.

The empty suitcase remains on the bed. Instead of returning the clothing to closets and dresser drawers, I’m plucking them one by one for my daily wardrobe. Eventually, only the empty suitcase will remain. And, for now, me.

Easy Rider

I’m standing in the kitchen looking out the back window towards the garage. My husband has just removed his Schwinn from where it rests in the corner. He crowns his head with a bicycle helmet and adjusts the strap. Then, he releases the kickstand, mounts, and pedals off. He has left the garage door open.

I’m not upset at this gaffe because he is wearing his helmet and has remembered to take with his cellphone, notepad, and golf-sized pencil. They are gone from the counter where he usually keeps them. A good sign.

I’m vigilant this morning because yesterday, when I was unaware, he rode off, leaving the helmet on a hook in the garage, and the phone, pad, and pencil on the counter. And, instead of protective covering, he was wearing a baseball cap topped with AM/FM radio headphones.

When he returned from that bareback ride, he entered the house and was still adjusting the volume on his headphones when I blocked his path. I stretched my arms to grab his two shoulders. “Take them off and look at me,” I said. “You can’t hear when you have them on.”

I didn’t say this, but I thought, Isn’t it enough you can’t talk, why do you want to squelch another of your senses? I didn’t voice this because we avoid discussing his condition - Primary progressive aphasia, a degeneration of the frontal lobe of the brain that affects speech.

I reached up to remove one of his ears pads. He did the same on the other. “Honey,” I said, looking straight at him so he couldn’t miss my words. “You cannot, must not, wear these earphones when you’re riding your bike. It’s against the law.” I don’t know if this is true. In Tommy’s case, it should be.

“You have to wear your helmet and take with your cellphone and notepad.” He nodded yes, and started to put the radio earphones back on his head. "Remember, honey," I said, “if you should run into any problems on your ride, you need the notepad to tell someone to use your cellphone to call me." He put two thumbs up. He got it; I think.

Today, with all evidence showing he has heeded my words, I use the remote to close the garage door and head for the couch. I need a break. As I sink into the cushions, I recall the first time I saw Tommy on his bike. He wasn’t wearing a helmet back then, but we were merely neighbors, not yet a couple. If I registered any problem with this risk, I must’ve have kept it to myself.

The year was 1996 and I was separated from my husband of 30 years and had recently moved into a new townhouse on Henderson Street in Chicago. In the mornings, Tommy and I would wave, him on his bike, me walking my dog.

In the evenings, his wave turned into a pause at my gate to pet the dog. We’d chat a bit. Soon, we became a twosome, and then after my divorce, a married couple.

Throughout our 14 year marriage, Tommy continued to ride that old bike, until one day, when the garage door was left open, it was stolen. We replaced it with the Schwinn, and added the helmet, lock, bell, and basket.

I wish I could send Tommy on the road as he was when we first met: a helmet-less, happy-go-lucky, assured rider. But I can’t, and I don’t. I insist on the helmet, the cellphone, the pad, and the pencil.

These days, once he pedals off and clears the driveway -- protected in the gear I count on -- I make sure I close the garage door. Everything inside remains safe.

The Artist Prefers to Work Alone

“What about here?” I am holding Tommy’s latest Paint By Number in my hands and stretching to reach a spot on the kitchen wall above the TV.

My husband raises two thumbs up, his catch-all for yes, okay, great, and perfect. We agree, “The “Ice Cardinal,” a painting of a red bird, white and blue tree limbs, framed in black metal, will look great in this spot.

From a distance, the painting looks colorful, novel. Close inspection reveals this effort -- Tommy’s latest -- does not match the perfection of the 15 other Paint By Numbers he has completed over the years.

No matter. I’m impressed with “The Ice Cardinal,” because I had thought his Paint By Number days were over. My husband’s condition, Primary progressive aphasia, a degeneration of the frontal lobe of the brain, has erased most of his speech and chipped away at concentration.

Once an avid reader of Ruth Rendell mysteries, Tommy left the last book untouched on the coffee table. Crossword puzzles no longer are attempted. And, an older Paint By Number had stood unfinished on its easel.

A few weeks ago, I thought of a way to help my husband restart that abandoned artwork. Without asking Tommy, I arranged a visit from an art therapist.

Their first session together appeared successful. Tommy, on a post-it note to the therapist, was able to admit his stalled painting was “a mess.” I envied her ease in getting my husband to confess this feeling, for he never revealed it to me. And, fearing it was due to his handicap, I never asked.

I envisioned a long relationship, teacher and student, using creativity to compensate for losses. “The mess” was tossed out, and in time for lesson number two, I bought a new Paint By Number, “The Ice Cardinal.”

On the morning of the second session, I opened the door to the art therapist. My husband lay prone on his couch, as if he were a corpse. She took a seat on the couch opposite him, pulled out a notebook, and began to ask questions that would lead to a plan for ongoing sessions. Looking at Tommy’s body language, I suspected she, and I, were in for disappointment.

She soldiered on, and when my husband didn’t show any reaction, closed her notebook and walked upstairs to the the spare bedroom turned studio. Tommy rose and followed. In less than a half hour, they were back downstairs. The art therapist gathered her purse and coat, Tommy headed back to the couch.

“See you next week,” I said, as I closed the door behind her. I looked at my husband, motionless on the couch and doubted my words.

Tommy’s arms were folded across his body. “How was your lesson?” I asked. No response. “Do you want to continue?”

Arms unfolded, two thumbs down.

“Not even one more try?”

He repeated the gesture.

“Okay,” I sighed.

I called her and said, “It’s not you, it’s me. I was overly ambitious. Tommy just isn’t into art therapy.”

“Perhaps an hour?” she said. “We were too rushed.”

“No, one of the affects of his illness is impatience.” What I didn’t add was, “especially for art therapy that wasn’t his idea in the first place.”

I’m not sure why Tommy gave up on the painting he had labelled “a mess.” And, he can’t explain why he rejected the art therapist. Or why, after she left the house, he rose from the couch, and went back upstairs to work on “The Ice Cardinal.” Alone.

Perhaps my husband was saying he didn’t want his wife to try and light his path with her bright ideas. And, he didn’t want a therapist to assist, no matter her expertise.

When Tommy was first doing Paint By Numbers, he likely enjoyed it because it was something he could do by himself, on his own schedule. As the degeneration progressed, perhaps he became frustrated when the last painting didn’t compare to earlier ones.

So, maybe it was stubbornness that pushed Tommy back to the easel. He would show us. “The Ice Cardinal,” which he completed a bit at a time, has found its place on the kitchen wall. Soon, we’ll have to scout a location for “Goldfinches,” his current Paint By Number.

Every night now, while Tommy is downstairs on his couch, in his prone position watching television and flipping channels, I slip upstairs to his studio and peek at this painting’s progress. From the doorway, I see the beginning of a yellow bird, green leaves, blue sky. No need for closer inspection. I raise two thumbs up, and retreat.

Now, May I Shoot the Messenger?

Early in 2009, I wanted to write a novel. The plot was outlined in my head: A woman, unhappy in her marriage, would abandon her husband and run away to New York.

At the time, my imaginary plot mirrored my life. I fantasized about leaving a note for Tommy, telling him I’d get in touch when settled. I didn’t think he would care.

I never did write the novel, nor run away. Instead, I made an appointment with my therapist.

“My husband is a jerk,” I told Sarah. “When we first married, he’d write me love letters, hide post-it notes with ‘love you wifey’ in my gym bag. Now, nothing.”

Sarah sat across from me in her small office. I sank into the cushions of her couch, and into my own self-pity, as I had done in other sad, or puzzling times in my life.

“He doesn’t care about me,” I whined. “He never asks about my day. I'll say, ‘how was the Y? How was golf?’ But me? It’s like I don’t exist.”

I continued, “And he bursts out with these stupid comments. He shouts at the television set. ‘You’re an actor,’ he’ll say to a commercial. ‘You’re fat!’ he throws at Oprah.’ I’ve tried to reason with him, but it’s no use, he just repeats the same dumb thing the next time a housewife selling soap or Oprah appears on the screen.”

Sarah listened. She didn’t nod, pitying my plight. She didn't agree my husband was a jerk. She didn’t encourage my escape. “Do you want to live alone?” she asked.

I pictured Tommy on his own. He’d probably survive. Before we married in 1998, he’d been a bachelor for 15 years. He knew how to cook, clean, take care of himself. But I couldn’t stand being alone. After my first husband walked out of our 30-year marriage, all I wanted was to be part of a couple again.

Sarah’s question lingered. I thought about the early years of my marriage to Tommy. Our compatibility, our comfortable evenings at home -- my husband on the couch working on the crossword puzzle, me opposite reading a newspaper. We were happy together.

“No,” I told Sarah, as I reached for the box of Kleenex. “I don’t want to live alone.”

As my sessions with Sarah continued, something was happening with Tommy. He was having trouble speaking. I asked him if he saw the words in his head. He nodded. “But you can’t get them out of your mouth?” Another yes. He could start the crossword puzzle, but could not finish it. Some people thought his garbled language meant he was drunk.

“Perhaps he should see a neurologist,” Sarah said, when I described his latest behavior.

His internist agreed. Over several months late in 2009, Tommy had blood tests, an EEG, a neuropsychometric test, and a brain SPECT scan.

“Don’t shoot the messenger,” was how the neurologist put it. He turned to me, as if Tommy was already unable to understand what was coming. “I suspect your husband has Primary progressive aphasia. It’s a dementia that affects the frontal lobe, the brain’s language center. There is no cure and the experimental drugs can cause hallucinations or other side affects."

He went on talking, about follow-up visits for Tommy, a support group for me. We rose from our chairs and left the office, hand in hand. As we walked to the subway, I turned to Tommy and asked, “Are you okay?”

“I don’t have dementia,” he said. “I know, honey, I know,” I said, squeezing his hand.

As soon as we arrived home, I looked up the symptoms associated with the illness. They matched every complaint I had unleashed in Sarah's office, plus some I had never got around to disclosing. I learned it typically started early, often in one’s 60’s, and was slow moving. Tommy must have had it for years before the speech problems surfaced.

Once I knew the diagnosis and symptoms, my anger towards my husband evaporated. I no longer wanted to write the novel, or run away. I ended therapy. I understood my husband was not responsible for his behavior. He could do nothing to stop his actions. I became empathetic and compassionate.

Today, three years after the diagnosis, Tommy can barely speak. Primary progressive aphasia has completed its task. Post-it notes once holding sentiments of love, are now used for clues when I get stumped. I value these written words as much as I did the love notes.

Our marriage is happy and as companionable as his illness allows. Today, when we watch television together, on couches that face each other, my husband no longer yells at the commercials, or at Oprah.