It's Just A Cold

I’m not sure everyone who cares for the chronically ill experience the same feeling, the same impact. I know I do, but there may be others who handle things better.  I just know, for me, it takes very little to color life darkly.  The small stuff, a lousy cold, can suck the life out of a good time.

Marty got a cold.  It changed my view.  Marty sneezed, coughed and wheezed; it colored my every waking and sleeping minute.  It still does, it still will until the last dribble, until the last cough is clear.  

It doesn’t have to make sense.  It doesn’t have to be reasonable.  It is real, just as real as the seasonal color changes.  The change in her cough colors everything I see and how I feel on a minute to minute basis.  It’s just plain crazy to let something so small change not only my perspective on the present but my memories of the past.  Crazy clearly is my life.

Marty’s cold came the day before Christmas.  It kept us from Christmas Eve services with our children and grandchildren.  Given the report of the chaos of those moments maybe the cold spared us anxiety.  I would have liked to have had that anxiety with my kids; Marty would have liked to have had that anxiety.

The cold wasn’t the flu, it wasn’t with high fever or the oft times accompanying low blood pressure or low oxygen levels.  It was a cold; a hacking, sneezing, snot dribbling cold.  It was something simple, but something that changed my perspective on holidays, present and past.

Christmas day was full; Marty rested the best she could given the blowing, sneezing and running.  The family was there, the house was brimming with people, with food, with warmth; with all of the good things of Christmas.  We sang Noah’s prayer, we ate, we laughed, we traded gifts, it was the red and green and bright lights of Christmas.  

But, by the end of the day, when it started to get quiet, when family filtered out the door and the day started to wind down, the color of the day, for me, grew darker as I grew more tense and more worried and more focused on the dark side of my life with Marty.  

By the end of the day I had carefully and artfully taken what had been a comfortable Christmas and convinced myself that we had never had a good holiday, that there had never been a worry free Christmas and that I was destined to miss out on the pure joy of any special time because of some cough or sneeze or wheeze.  I completely colored our entire life with dark shades.

Normal for most is treating the cold, accept the cold, deal with the snot, deal with the cough, lie down for a day and move on.  We don’t deal in normal; at least I don’t see any of this as normal.  I see it, right or wrong, as the potential precursor for something much worse than a cold.  How’s that for optimism and Christmas joy.  A cold is the harbinger of a funeral.  

At the dark of that Christmas night I pitied myself into a party.  My daughter tried.  She reasoned with me, “Mom is stronger, healthier and better able to withstand a cold, we know more than we used to, this is just a cold, we know what to do.”

Doesn’t matter, didn’t matter, I let the perceived magnitude of a moment in time color reality and erase years of reality.

We came home from the lake the next day a day earlier than we had planned.  Marty got a bit better during the day but she still labored under the cold and all of the coughing and sneezing stressed her lungs to the point she was wheezing too much.  But she got better and just like Erin tried to tell me, Marty is stronger and we do know better how to handle things.

It took me days to gain the perspective to see what I had talked myself into, the tricks I had played with my own head.  It took me days and sweating with Gretchen the fitness muse to finally say, I over reacted; I maximized and let the moment take over not only our present but our past.  I wish I was smarter, I wish I could see the truth in real time.

We’ve been to Great and Wise, he had a cold over Christmas too.  Marty is over the cold and God willing will avoid the flu making the rounds.  We did take the flu shot, I hope you did too.  

By the way, I did get the same cold and just like Marty, I got over it, just like a normal person does.

It Snowed at Pendaries

It was Christmas 1994.  We were in a small village in the Sangre de Cristo Mountains of New Mexico with Marty’s family.  Her parents had a wonderful home there that often served as respite from the Texas heat and flat geography.  This Christmas, in Penderies, there was snow on the ground and it was ice cold.  

I remember the crisp, clean cold; I remember the marvelous house in the mountains with the huge balcony overlooking a deep, long valley.   I remember being with Marty’s parents, I remember being with Marty’s brother and his family, I remember our family.  I remember an almost impossibly idyllic Christmas with family and the small mountain community of full time and part time residents.  I wish I could remember the details.

Our kids were barely or not quiet teenagers, a wonderful, horrible age.  We made them pay homage to our music, Ann Murray, John Denver, Linda Ronstadt and Peter, Paul and Mary during the 13 hour drive from the flatlands of Waco Texas.  Our son complained and pouted about the aural assault but we just played it and Marty intentionally turned the music loud enough to penetrate his earphones.

When we got there we skied, we talked, we played games, we ate, we played in the snow and we rode thin plastic sleds down some of the steep snow covered dirt roads and trails.  It was pristine; it smelled of fires burning pine logs, ice and clear air.   You could hear the crows; you could see the squirrels chasing their tails and you could feel the ice crystals in the air. 

Marty and I loved being in the mountains even when the thin air made it hard to climb stairs or walk very fast.  It was far away from the flat semi arid land of Texas, it was away from work, from reality and our family fit into the environment like a comfortable pair of slippers.  

Being with her family, who really were a lot of fun, watching her then 65 year old father riding a three feet long sled made of purple plastic down a steep grade covered with snow and piling into a snow bank, was a great time in a life of great times.

That Christmas Eve in Penderies Village was one of those seminal moments you carry with you your whole life. 

This small New Mexico village has a small log non-denominational chapel, yes, a log chapel, for the residents.  It is rustic and tiny with only about eight pews in it and a very small chancel area.  The heat was spare and there was no electricity.  I remember the cold, the kerosene lanterns casting a slight, pale, shadowy light along the walls of the chapel.  

Marty always loved Christmas Eve candle light services at our church and on the odd years we weren’t home she missed that fellowship, she missed the carols, the homily, the singing of “Oh Holy Night”.  On this Christmas Eve we were 8,000 feet above and 700 miles from that church.  She had long ago planned to bring a little Presbyterian fellowship to the little chapel in the mountains.

Marty lifted an order of worship for Christmas Eve from our church and adapted it to a short, small service.  She recruited, i.e. assigned, all of us, all of her family, to roles in the service.  She brought a key board, she made sure we could use the chapel, she got word out to the residents of the village and she led us in our own Christmas Eve service.

We read scripture, we read prayers, we led prayers, and we sang songs, with family, with strangers in a small chapel in the mountains.  Marty, me, our children, Marty’s parents, Marty’s brother and his wife and their children, we all read, we all participated, we all worshiped, led worship and recognized Christmas in a way I had never experienced. 

I don’t remember exactly how I felt as I sat in that chapel, as we all sat with each other and a small room full of complete strangers.  I know I was probably too distracted to enjoy the full impact of the service and how memorable and touching the service would be.  

As the service ended and as we slowly left I took Marty’s mother’s hand and arm and helped her walk down the steep wooden icy steps of the chapel.  She was wearing a long, full length, over stuffed parka holding it tight against the cold mountain air.  She didn’t say much but I knew she filled with pride and love over what she had just seen her little family do in front of God and everyone else in Penderies Village.  

We didn’t know it but she was one day away from the emergency room, we were one day away from Marty and I beginning to see our own future, we were one day away from breaking the aura of that special night.

Christmas day was peaceful.  Christmas night Marty, her father and I drove her mother Jean, into the small Las Vegas, New Mexico hospital.  Jean was dizzy, sick to her stomach and having a hard time getting her breath.  The mountain air was taking a physical toll on Jean.

Marty and I sat in the emergency room waiting area completely unaccustomed to the idea of the hospital emergency room.  We didn’t know, we couldn’t know, that our future held many nights sitting in emergency rooms waiting to find out the fate of people we loved.

Jean was okay that night, she simply needed supplemental oxygen, but it was really a clear early warning that we were on the cusp of dealing with her overall frailty.  The trip to the hospital, her illness abruptly pulled the curtain closed on a sweet, gentle holiday, a Christmas I wish I could remember better than I do, a Christmas I wish Marty could help me connect to even though it was years ago.

I wish I could really feel, both tactilely and emotionally, all of the details of that Eve, of that entire holiday.  I wish I could remember how it felt to have Marty sitting next to me, how Marty felt, what it really looked like as our family sat together, worshiped together, prayed together, and lived in those precious moments together.  I wish I knew then how important it was to feel, to grasp and truly remember each of those moments.  

I remember the big feelings, I long for the details.  I didn’t think I would have to always keep the details because I had Marty to do that, I had Marty to full embrace and remember the moment.  Life changes, hopefully we learn to capture, engage and caress the moment.  I try harder now.

An Old Video Tape

Our son and his wife celebrated their 8^th wedding anniversary this weekend and I had the distinct honor of hosting my almost two year old grandson while they took some needed respite from parenthood.  Noah was the perfect house guest and in the eyes of his Grandpa is really very close to perfect.  When he looks at you with his almond shaped clear blue eyes and takes your hand and says, “Come on Pa,” what are you going to do?

You are going to go to the zoo early in the day to avoid the oppressive Texas heat, you are going to take him to the grocery store for snacks you think he will like, you are going to go to the park and slide down the slide that is just barely wide enough for your behind and you are going to revel in him clapping his hands saying, “Yeah” and “More.”

I’m not sure why, maybe I just needed to sit down and breathe and was burned out on  “Dora the Explorer” but on his last day here I popped in an old VHS Christmas tape (yes, I still have a VCR) Marty and I made with the kids way back when.  We made the tape to send to family and close friends for Christmas of 1994, its one step more narcissistic than the Christmas letter.  

The tape was originally my idea, just something different the Christmas letter to bring our faces to people we would not be seeing for the holidays.   Marty, took a good idea and made it better by adding humor, wit and sharpness to the family production.  She often made my ideas better; I just refused to believe it at the time.

The tape has the four of us parodying our lives at the time.  We have the typical 15 year old boy learning to drive with his mother wearing a crash helmet, the 12 year old girl constantly on the phone and me lip syncing Silent Night with Matt, Erin and Marty as my back-up singers.  Family and friends watched it, family and friends smiled and laughed.  It typified life with Marty, just a little bit over the top.

I wanted Noah to watch it because it was one of the  tapes I knew we had with Marty on it, the Marty before she was sick, the Grandma I want Noah and Lily and the baby to be named later to know.  I wanted Noah to see Grandma when she could walk, talk clearly and laugh easily. 

 

I know he recognized me because he pointed and said “Pa”.  I know he didn’t recognize his peach fuzzed 15 year old father to be, I don’t think he made the connection with Grandma, with Marty, she was too different for his two year old mind.

I watched this little eight minute tape with Noah and watched as my wife talked and laughed on the television.  I watched as she nuzzled her face next to mine and snickered at the idea of making this video and generally acted silly.  

My tears surprised me.  I have seen this video before; it’s a prized possession because of what it contains, my wife smiling, my wife laughing, my wife.  The tears welled, a small catch in the throat, pressure, then tears gently rolled down my cheeks.  The depth of my emotion surprised me a bit.

 

I wiped the tears, watched the video as Noah ran circles around me. Watching the snippets of our past helps me understand where we have been and reminds me of the imperfect but rich lives we had.  Watching Noah, he of the smooth, alabaster skin, of the easy smile, of the blue eyes reminds me of the blessings of our present and how Marty’s life, her essence will continue.

Watching and remembering the tracks of our lives always leaves me feeling, deeply.  Watching Marty as she was makes me wish I had been better at living in the moment back then.  Watching the past makes me regret the time wasted with minutia.  Being aware of what “used to be” pushes me to spend my time enjoying the simple pleasures of being with the people we love.  Noah didn’t recognize Marty in the video, but I did, and those memories make every day with her important.

Moments

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.

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