“You never know a man until you live with him.” During the past 10 months, I’ve come to a different conclusion. “You never know a man until he is diagnosed with a progressive, incurable, neurological disease.” May 16, 2008 is exactly one year since my husband, Lou, and I were told that he has Parkinson’s Disease.
It started out innocently enough. One evening, about four years ago, Lou was embroiled in a heated discussion with his teenage daughter. In a moment of insanity on his part, he actually tried to have a rational conversation with her about her spending habits. Her illogical and self-serving remarks angered and upset him.
During this exchange, I noticed Lou’s right hand shaking “like a leaf.” That’s an expression that I never thought I’d use on a daily basis. I didn’t think too much about it. After all, who among us hasn’t been reduced to having some type of physical, visceral reaction in the face of an argument with a teenage offspring?
Now when I think back to that day, and that argument, I see imaginary molecules of dopamine flying out of his brain into oblivion.
In the year leading up to the diagnosis, I noticed that if Lou became emotional at all, his hand or his pointer finger would exhibit a tremor − nothing huge, nothing that stopped him from doing anything he needed to do, nothing that kept him from performing surgery.
At my insistence, my husband called a neurologist friend of his to discuss these weird little symptoms. He told Lou that it was probably nothing, but to make an appointment with a neurologist who specializes in “movement disorders.” Movement disorders − a euphemism that was new to us, so much easier to actually hear than “Parkinson’s Disease.”
Alessandro DiRocco, an Italian Jew, was the person who put Lou through his paces on that hazy, hot and humid mid-May day. The guy saw us at five p.m. in his dingy, cubicle of an office in downtown New York. We were there until seven. Some things you never forget. I remember that Alex (we count him as a friend now) looked as if he needed a shave, and that he had tears in his eyes when he said the words “Parkinson’s Disease” − and even more tears in his eyes when he told Lou that he could never operate again.
The irony of the whole situation was surreal. The good news? Alex told us that Lou has a normal life expectancy and with new treatments he may very well have a good quality of life for a very long time.
Meanwhile, I flashed back to an incident that had happened years earlier. Lou had operated on a young woman. She had a slew of complications (or as he used to call them, “miseries”). He stayed by her bedside for countless hours, slept in a chair in her room several nights and kept her alive by his incredible talent and tenacity. I remember the day that she died. I was with Lou while he called her family.
I will never forget how he wrote her mother’s telephone number on the leg of his scrubs. I don’t recall the words that he used to deliver the horrific news, but I do remember falling in love with him all over again. When he got off the phone, I held him while he wept.
Lou and I cried a river that night in May when we were on the receiving end of devastating news. I cried because my young (53), virile, handsome husband had been put though a battery of exercises, like some kind of trick pony, and the result was Parkinson’s. I cried out of sheer terror. We held one another and we hugged Alex, and he wept right along with us.
The cell phone was ringing, but I couldn’t bring myself to answer it. Who wants to ever deliver this kind of news? But the family knew that we had “the” appointment, so the calls kept coming. Our son-in-law, Ezekiel, had a really tough time with hearing the words I had to say. He thought that the appointment had been unnecessary in the first place − that Lou was just stressed and exhausted. He thought that I was overreacting − as usual. I wish that Zeke had been right. I wished we were all laughing about how nutty Mom is.
When we left Alex’s office, the sky opened with a huge downpour. Lou ran across the busy Manhattan street, barely looking, before he crossed (as per usual) to hail us a taxi. How could someone like him, in the prime of life, a risk taker, a brilliant man, a loving husband, father, grandfather, be stricken with something like this? I couldn’t bring myself to take my foot off the sidewalk. Lou came back and held my hand. I wondered if some day soon I would need to hold his hand while he crossed even the quietest of streets. Unimaginable.
Once the initial shock passed, Lou took up golf, Tai Chi, rowing, yoga and piano lessons. He has a suntan − not the kind of color he used to get from five days of vacation, interrupted by 1,000 phone calls from panicked residents and sick patients (he never turned off the cell – not even when he was in the movies or the shower) − but deep, healthy color from hours in the outdoors rowing a boat or hitting some balls over the net.
He’s dropped a pant-size; he’s eating better and exercising daily. When anyone asks, he says that he feels “great.” His days are busy with consulting work and helping me with anything and everything and with spending time with our granddaughter. She and he are delighted that Saba is available for a daily “swim” in the hot tub or to drive her to pre-school. The other day, she marched her three-year-old self into our house singing “where is Saba… where is Saba” to the tune of “Brother John.” Nothing could have tickled him more.
And, Lou wants to spend some time in Israel learning something. He’s not sure if it’s studying at Pardes or taking an Ulpan, but he just wants to soak up some of Jerusalem now that he has the time.
He wants to become a really good golfer. He reads everything he can get his hands on about golf, watches the Golf Channel and takes practice swings in the living room. I relish being a “golf widow.” Anything that makes him happy and keeps him moving makes me feel great.
Lou’s overriding reaction to this whole situation goes something like this. “Everyone has a load to bear and this is mine.” He believes that new medications and treatments are on the horizon and that he will someday benefit from them. He believes that Michael J. Fox is working overtime and raising a fortune to do it. My reaction? If he’s okay with that, then I’m okay with it too. And I make fruit shakes. Yes, I am the “blender queen.”
Overall, I handle this situation through fruit shakes. I make several a day – heavy on the blueberries. Any time I have the opportunity to get some anti-oxidants into his body, I seize the moment. I also ply my husband with fava beans – a food high in natural dopamine. Our friends are amazed by how many ways there are to cook a fava bean.
Who knows what the years ahead hold for any of us. Right now, I feel blessed. Lou is feeling well. We’re spending time together. We have disability insurance. G-d willing, we’re going to visit Israel for Her 60th birthday. I hope to see him running around the backyard with our granddaughter this spring and I pray that he’ll shoot a few pars and birdies this summer.
Now I feel as if I know my husband on a new level. I see him in yet another new light. He’s brave and strong and full of good grace. And since May, this song pops into my head at least once a day. Spiral Staircase captures how the diagnosis of Parkinson’s Disease makes me feel about Lou. “Oh, I love you more today than yesterday, But not as much as tomorrow. I love you more today than yesterday. But, darling, not as much as tomorrow.”