Sunday, December 26, 2010


Our lives are filled with many days, which are filled with many moments. We look at our lives and we see good days, bad days, and days that are just marking time. Each of those days, like Christmas day, like this very day, are filled with moments, good moments and bad moments.

I’m a golfer, well I’m not a golfer so much as I play golf, badly. When I play golf, I enjoy the fraternal time, I enjoy the time outside, I enjoy moments of the golf. A round of my golf is generally comprised of about 100 swings at the little white ball. Fifty of those swings are reasonably satisfactory, forty of those swings make me wonder why I play golf, and ten of those swings are sweet, solid and pure. Those swings, when the ball flies straight and true, are the reason I love to play golf.

Thus is life, comprised of moments of great joy that can erase the bad and raise the mundane.

Christmas day, a holiday centered on the family and the birth of hope, is an intense study in this cycle of life. It is filled with the mundane, the cooking, the cleaning, and the putting up. It is nicked by bad moments of arguments, ill memories, missed gifts and the emotional trash we all get to carry.

The day is also painted and frozen in time with moments of pure bliss like watching your baby grandson walk through the living room banging together two pieces of a cardboard box like cymbals. Those moments, many or few, raise the day.

Marty was just coming out of her room for the day as my sister and her family made it to our home. My sister, Martha, was wearing a necklace that was a small replica of a string of multi-colored Christmas lights that lit up and blinked off and on. As she bent down to greet Marty and kiss her on her cheek Marty noticed the necklace and commented on the lights. Martha asked Marty if she had a necklace like that to which Marty said no. Martha looked at Marty, lifted the necklace from her neck, gently placed it around Marty’s and said, “You do now.” Marty wore the necklace the rest of the day; Martha raised the level of the day.

As lunch time approached Marty and I sat at the dinner table and watched as our children worked to prepare the Christmas meal for my whole family. There was a lot of cooking, some cleaning, some hustling, some bustling as our kids stepped up to feed my parents, my sister’s family and my brother. They were dealing with the reality of the day; we had the gift of being able to watch the ebb and flow of the moments of the day.

As Marty and I sat at the table our daughter-in-law, who is almost six foot tall and wonderfully slender walked out of the bedroom carrying our grandson, his smooth alabaster skin matched with the alabaster skin of Sarah, his blue almond shaped eyes sparkling as he shook off his nap. It was a beautiful young mother clutching and holding her perfect apple-cheeked child. It clearly was a moment above the mundane amidst the chaos of the day.

Tonight as we watched a football game after the carnage of the day, after all of the presents, the food, the visiting, the cleaning, I sat, half watching the game, the other half listening to Marty hum as she watched the game and then hearing Sarah, as she sat beside her start to hum just slightly, the two of them humming almost in perfect sync without any mind of the other; another moment that overwhelmed the mundane, that conquered the any bad parts of the day.

Days like today have the potential to be nothing more than a torrent of overwhelming stimuli. Days like today have the potential to push Marty to exhaustion. Days like today have the potential to push every anxiety button I have. Today, though, was one of those special days that was raised past the turmoil and pushed past the mundane to a level of contentment and bliss. It’s a whole lot easier to find the great moments when you are looking for them and when you have lots of help.

Friday, December 24, 2010

Changing Expectations of Christmas

It’s Christmas, that most wonderful time of the year, so it’s prime time for me to get my fretting and angst going full speed. It’s the perfect time to set unrealistic expectations and make false assumptions.

For holidays when I was gainfully employed I worried about getting time off, I worried about getting called in, I worried about who we were going to spend the holiday with, I worried about people liking the gifts I had chosen, I worried about getting and paying for the gifts; all really important stuff if your life is normal.

Our new life dictates an entirely different set of concerns. Today, with Marty, I’m mostly focused on how she feels, to the point where she accuses me of being just a tad bit hyper vigilant. Yes, that pretty well paints my picture; I’m on point like a German short hair.

The new Christmas worry, dictated by the strokes, is will we get through the holiday without a medical issue, will we make it through the celebration without an anxiety driven meltdown by me or a real medical crisis by Marty. The holidays, especially the primo holidays like Thanksgiving and Christmas, are just ripe for me to obsess about Marty’s health, especially since we actually have things we really want to do. When you then realize the doctors’ are not available it ratchets up the anxiety meter even higher.

I also find myself worrying about fulfilling our family’s expectations by being at all or some of the family functions. We want to be with them enjoying family warmth but we never know what might keep us from making a trip or hosting an event, this is when the whole living day to day thing gets harder.

I also worry about meeting our own expectations desires. We both want to be a part of the celebration in as many ways as practical without exhausting both of us. I love taking Marty places and doing things with her and I think she really enjoys being in the thick of the holiday chaos, but it takes a lot of energy for both of us and there is a fine line between exhausting and enjoyment.

Since the strokes we have missed some holiday celebrations, we have missed some birthdays, we have missed part of the ebb and flow of life. Since the strokes we have needed to adjust our expectations but it is especially hard this time of year to make that adjustment. Feeling separate from the happiness of special times is one of the hazards of our life, it just is. We don’t choose it, we just live through it remembering there are many days in a life and real happiness comes when most of those days are good.

It really does come down to setting appropriate expectations. It really does come down to establishing reasonable preconceived notions of how things “should be.” Take for instance this recent conversation I had with Marty while sitting watching some inane television show. It’s a perfect example of expectations gone awry.

Without looking at her, I say, “Marty, I really love you.”

“I love you too, a lot.”

“I love you more than you love me, “I answered, playing the I love you more game, fully expecting, fully assuming she would come back with the appropriate, “No, I love you more.”

“I bet you do,” she says, never taking her eyes off the TV.

Flummoxed, I just sat there for a minute and started to laugh. “That’s not what you’re supposed to say.”

She laughs a bit and said, “I know.”

You have to watch out for expectations because everything changes, even sweet nothi

Monday, December 13, 2010

We Don't Get to Choose

Wednesdays are movie days for Marty and me. We go early in the afternoon when there is virtually no one else at the theater. For someone who has worked all their life going to the movies in the early afternoon in the middle of the week is positively decadent, but then I’m a real bon vivant.

This week the movie choice was “Love and Other Drugs” a decent sort of romantic kind of comedy thing starring Jake Gyllenhaal and one really hot Anne Hathaway. The plot follows a shallow pharmaceutical salesman (Gyllenhaal) who meets weird Maggie (hot Hathaway). They have a lot of naked sex, eventually fall in love and break up because Maggie has stage 1 Parkinson’s. The line that got me was when she said, “I will always need you more than you need me.” It felt so familiar.

Gyllenhaal’s character, Randall, is faced with the most basic of questions, will I stay or will I go. Maggie bullies Randall into leaving and eventually he leaves Maggie to the natural course of the Parkinson’s. Randall is just like most a lot of us who are faced with a partner and catastrophic illness, we ask ourselves do I leave or do I stay.

I would be lying if I didn’t admit to thinking about bugging out from time to time. I have plotted; I have calculated how I could do it and still feel like a human being. I could find a great retirement home for Marty; I could get her set up, then leave, just go and never look back except to call the kids from time to time.

The overall feeling of anxiety and stress for caregivers is at times overwhelming. The worst part is that care giving is never-ending and the only true end is the worst end, death. The concept that cures are not forthcoming and that Marty will never really be better than she is right now, has always been the most difficult part for me to accept. I can do anything for a finite period of time, forever is a difficult concept when you are talking about caring for someone who cannot care for themselves.

I’m not entirely sure why leaving or staying was never a real choice for me. I’m not amazing, I’m not particularly benevolent or selfless, I’m not a natural caregiver, I’m none of those things. It has always felt like staying and taking care of Marty was the only right thing to do, it was the only thing I could do. Staying was not just the right choice, it was the only choice.

I remember wondering why Marty’s father did not put her mother into a nursing home after her health continued to decline. Marty asked him. He said it just wasn’t the right thing to do. Marty thought he was afraid of loneliness and facing the reality of his wife’s situation. I know it’s because he never really had a choice, it was what he had to do because he loved her, because it was what he promised her when they married, that he would care for her even when it got hard. I didn’t understand before, I do now.

There are millions of people today who provide some level of care for their spouse, their child, their parent, their partner or their relative. I can guarantee that almost all of them have at one time or another said, “screw it, I’m out of here,” and then in spite of it all stayed, not because they were saints but because it’s just what so many every day people do, it speaks well of the human condition.

Every time I have ever thought about ditching the whole thing I see Marty, I see her sitting in her wheelchair or laying in her bed and what I see is my wife who I love and I know loves me even when I want to run. What I see is a woman, who has had so much of the best parts of her taken away, yet she still smiles, she still laughs, she still loves the people around her, she still corrects me and completes my sentences, she still really loves me and she really needs me to be better than I am. When I think about it, when I think about the line in the movie about her needing me more than I need her, I’m not sure. I suspect the cold truth is I need her every bit as much as she needs me and I’m happy with the choices I’ve made.

Tuesday, December 7, 2010

Finding Graceful

Marty and I watched and listened as the trio gently played their strings. The classical music filled the lobby and the three college students, fixated on their instruments, entertained the frail, broken audience in the sub acute care center. The crowd was largely old and mostly very ill or recovering from being very ill. I sat there in the faux living room and thought about how our somewhat inauspicious introduction to sub-acute care had not necessarily belied the physical and spiritual grace we would find there.

Our first day there had come after a tough stay at a very crowded hospital. When they came to move Marty from the hospital to the new facility we were not suspecting or even looking for grace, we were both simply afraid.

Marty and I were in her hospital room when Big John, a huge man with an irrepressible smile, came and quickly and effortlessly scooped Marty out of her bed and into her wheelchair. I had seen how difficult it was to move Marty at this stage and held my breath, trying to help, trying to stay out of Big John’s way. His smoothness and his grace for such a big man were perfect.

As we made the move from the hospital to sub acute care fear, concern, and emotional exhaustion just flooded both of us. I was afraid of what I did not know, I was afraid because Marty was afraid..

As it turns out Marty’s room wasn’t ready so we had to sit out in a small living room area. The television was on, the sun was coming through the windows but all I could focus on was the overriding, oppressive, sweaty fear. Marty was cold, it was January, so I wrapped her in a blanket and sat as close to her as humanly possible.
It was the start of a three month stay there and a six month ordeal to get her home.

Over the next days and week we found a rhythm and got to know the nursing assistants who were the caregivers, the people on the front line caring for Marty. Knowing the people, knowing the routine didn’t completely dispel the fear, but the routine and rhythm began to help. I spent almost all of my time there with Marty; she was so vulnerable, completely unable to advocate for herself, so I stayed with her or one of our children stayed with her. Marty did not spend one night alone there; someone from her family was always with her. It’s good to have remarkable children.

As I watched the caregivers come in and help care for Marty I caught on quickly to the fact that the more you engaged them, the more they began to see Marty as Marty and not just a patient. We developed a rapport as through their actions they started training me in how I would care for Marty.

Back to the music. What struck me that day as I listened to those artists play their instruments is how similar their artistry was to the caregivers who helped care for Marty. As they moved Marty, as they turned her to bathe her or dress her, as they secured her to help her stand and move to the wheelchair, the best among them were doing it with as much grace and artistry as the musicians playing their instruments.

What I saw in the days, weeks and months at the sub acute care wasn’t always perfect, the lack of perfection drives the need to be there to help advocate for the most vulnerable. What I saw were constant little acts of grace and heroism each day.

I saw the old man come each day to be with his wife who clearly had been hit with a devastating stroke. He was there in the morning before I got there and still there on the days I would leave. His stamina, his desire to be there for his wife was simply astounding.

I saw the really large nursing assistant who came each day when we were there to help clean and dress Marty. I watched as this woman who didn’t appear to be particularly tender talk to Marty in quiet tones as she rolled her back and forth to first put on her shirt and then her pants. To see this woman you would never think of the word grace, to watch her care for Marty it’s what I still think today.

Those men and women who come to your room every day, the men and women who see so many Martys in their career are the people you count on to care for you or your loved ones. Those men and women, when they are good, ply their trade like a practiced cellist, moving with grace, passion and tenderness as the music they make with their work stays running through our minds even today. It makes you want to be graceful.