Softie

Tommy and I are on a subway platform in the Loop waiting for the Blue Line to take us home. I’m leaning on a metal column and peering down the track to spot the headlights of the next westward bound train.

My husband has positioned himself on the opposite side and selected his own pillar for support. His eyes are riveted on a pair of musicians a few feet from me. The male plays a guitar and the woman sings -- a Spanish song, quite lovely and a nice respite from the clang of trains and chatter of waiting passengers.

An open guitar case is at their feet. Some paper bills are already strewn inside from earlier donors, and perhaps the duo has seeded the case to encourage more.

I leave my train-watching to focus on my husband. I stare as his hand reaches into his pocket. I knew this would be coming. His eyes are misting as he pulls out his wallet and extracts a bill, which I’m hoping is one dollar. He  drops it into the guitar case and the duo nods a gracias in his direction.

“Musicians are okay,” I had told him earlier. “But the panhandlers on the corner are scam artists.” I believe this is true, for I’ve seen one on crutches suddenly able-bodied and sauntering from his spot near our house.

My husband obeys this rule. As long as he can drop a bill into a musician’s case, he’s a happy philanthropist.

Since I didn’t know Tommy in his younger days, I can’t attest to his generosity back then. But, because he’s always been frugal, I’m assuming he wasn’t so quick on the draw with street musicians and beggars.

I could be wrong, but I think the new largess is part of his current condition.The frontal lobe of the brain affects emotions and ever since his began to deteriorate, he’s become a softie. Along with his charity, he’s a weeper at sad and happy television shows, and bar mitzvahs and weddings.

When my husband begins to tear up, the celebration hosts are touched. “Such a sensitive man,” I imagine they whisper to one another.

I’ve done a lot of reading about Tommy’s condition and am relieved to learn he has not taken on another emotion that is sometimes linked to the illness: rage. If anything, he has become kinder (witness the charity), more sentimental (the tears), and softer. 

Because he can no longer speak, he doesn't send irritating comments to television commercials, obese strangers, or other innocent targets as I once complained about. I understand now those slurs were the beginning of his brain’s degeneration -- inappropriate responses are a classic symptom. I haven’t explored if these barbs are still in his head; I prefer to think he no longer holds them.

Today in the subway, I say to Tommy, “Honey, please show me what you gave the musicians.”  He opens his wallet and points to a dollar bill. “Good,” I say. “Now be sure to tuck your wallet deep in your pocket."  He does, then pats it for emphasis.

At the end of the line, when we have descended the stairs, a panhandler is at the stoplight near the expressway. He is holding a sign, “Homeless. Need Food” and is limping toward cars that are stopped and waiting for the light to change.

I turn to look at my husband. I see his hand reach for his pocket. “Tommy,” I say. He looks at me, nods his head, and drops his arm at his side. I take his hand in mine as we cross at the Walk sign. My husband glances back and watches the guy continue to hobble dramatically along the cars.

“Fake,” I remind Tommy. He nods his head in agreement. When we reach the other side, I look back and send a silent suggestion to the grifter, Should’ve hummed a few bars.

   

Grateful He’s A Tightwad

I’m in the audience of a medical conference on Frontotemporal degeneration (FTD) and Primary Progressive Aphasia (PPA), little-known illnesses to most, sadly familiar to me. The auditorium is filled with caregivers, and members of the healthcare field.

Every since my husband was diagnosed in 2009, I’ve become well-versed on the PPA version of the condition. But I figure there’s always more to learn, so here I sit hoping to catch news of some miracle cure.

I listen to speaker after speaker. Yes, awareness is building. Yes, research continues. But, no, no hope yet for reversal of Tommy’s loss of speech. I slump in my seat, discouraged.

A speaker steps on stage to introduce the topic of bvFTD. My attention sharpens; this version is new to me. I learn that the “bv” that precedes FTD stands for “behavior variant.” Those burdened with those added initials, “can experience excessive spending with a lack of awareness of its implications,” she says.

Then, hands are raised in the audience, microphones are passed, and the horror stories begin -- of loved ones’ shoplifting, impulsive buying, and falling prey to Internet swindlers.

“I came home and there was a boat in my driveway,” says one caregiver who has risen to her feet.

The microphone goes to a man who volunteers, “She bought a new car, never discussed it with me.”

I overhear a woman seated in my row who says to someone on her right, “My husband sent money to Nigerian scammers, and when I stopped it, they started harassing me.”

And there was more: sweepstakes, mail orders, contests, door-to-door salespeople, lotteries; all spilled out as examples of bvFTD misery.

“My God,” I say too loudly. To myself, I think, even if my husband could still talk, or use computers, he’d never get bvFTD because he’s a tightwad.

As I lean back in the cushioned seat, I recall a scene that supports my logic.

“I like it,” Tommy had said as he stared at the new Timex I fastened on his wrist.

“You do?” I said. I stood back, hands on hips, and studied him as he twisted it upright so its white face was easily visible.

I was pleased at my husband’s reaction because this watch, which I had purchased at Nordstrom’s for $65, replaced the Pulsar he had worn for 40 years.

Throughout our marriage, I tried to get Tommy to give up that elderly timepiece. But, he always insisted on new batteries or fresh bands to keep it alive.

“Nope, this is dead,” was the last repairer’s diagnosis. 

“Please let me buy you another,” I had said to Tommy. “I promise not to spend a lot.”

The Pulsar wasn’t the only long-held possession I’ve attempted to pry from my husband’s hands, and replace with a newer version. I’m still unsuccessful with his balding brown leather wallet.

“Look, Honey,” I say whenever we pass a display of billfolds. “This looks just like your old one. It’s not expensive. How about it?”

He’ll shake his head “no,” put a hand on his pants’ leg to verify I haven’t pick-pocketed it, and pull my elbow to move me along.

Naturally, our differing views on spending money showed up early in our marriage. Although Tommy and I both grew up in households with little cash, my father was careless with money. I caught that gene and in my marriage to my first husband, a doctor, my lineage had a field day.

As for Tommy, paychecks were parceled out for necessities. He skipped college, and went into the Air Force to help support his widowed mother.  After the military, he worked to pay rent, utilities, his YMCA membership, and to build up a small savings account. No car, no credit cards, no up-to-the-minute fashions, no travels.

When we wed, I tried to spoil him with a joint checking account, credit card, and a few doodads that I was happy to bestow on my penny-pinching husband. And while Tommy enjoyed these gifts, he never became infected with my loose-spending ways.

Now, as I sit in the auditorium, riveted by tales of depleted savings, unwanted merchandise, and giant credit card bills, I feel sympathy for those who cope with the wreckage left in bvFTD’s wake.

For myself, I admit to new gratitude. True, no miracle cure awaits my husband, But his frugality, thus far, has kept us both from drowning.

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.