Monday, December 24, 2012

Making Memories

I remember coming back to our rental home in the Texas Tech ghetto in the summer of 1974 after a weekend of water skiing and drinking.  Marty was sitting on the front porch of the house I rented with three other guys, waiting, for me.

I remember sitting in the garage of that same house, Marty and I were sitting on the floor, legs touching, talking quietly as we watched, listened and smelled the summer rain.  I remember being aware of growing close.

I remember the very early summer morning, in Paris (Texas), watching as they wheeled Marty away to the delivery room to give birth to our first child, a son.  I remember how long the wait seemed and how intolerably dumb it was that I had to sit in the waiting room.

I remember watching as my daughter was born in Muenster (again, Texas) and seeing this perfectly round head with dark hair capture my heart as she took her first breath.  This time I was there to see Marty perform a miracle.

I remember sitting in our church, standing to sing a hymn and putting my hand over Marty’s as we both rested our hands on the pew in front of us.

I remember singing along with Pluto and Goofy and the gang as we made one more road trip to west Texas.  

I remember standing at the top of the ski slope with Marty; she was dressed in the bright red ski suit that Erin would wear when she became an adult.  I remember looking at the sky, the snow, our children and being very simply, happy.

I have often worried if our time of making good memories was over.  I have worried that the strokes, which have permeated every facet of our lives, would simply take over and color any and all memories I might have after the strokes.  I have worried that the only memories we were making were the memories of illness and fighting for survival.

Then, I close my eyes, I think, I remember.

Then I remember seeing Marty standing and dancing on a set of steps they used at rehab after her first stroke.  I was amazed because I wasn’t sure Marty would ever be what she was before.  She smiled as she stood there, supported by her therapist and I, once again, I was captured by this woman.

Then I remember sitting with this woman on our boat dock, looking out over the water, no wind to ruffle the lake, the water still, flat, shimmering, the setting sun casting orange and red shades through the fragments of clouds.

Then I remember seeing her clutching and nuzzling our first grandchild after his baptism, I remember her kissing his head.   I remember her holding her second grandchild and smiling and then taking the third in her arm for the first time.

Then I remember gliding along a small dance floor.  Marty sat straight in her wheelchair and said she wanted to dance, so we danced, in a fashion, we danced at our daughter’s wedding.

Then I remember her sitting at the front of our church with Jimmie’s face next to her reciting the charge at the Christmas service.  Jimmie would speak, Marty would speak, and I remember, every word, every phrase.

Then I remember her broken smile, her stubborn laugh at our stupid behavior, her questions, her statements, her requests, her courage, her determination, her patience, her love for her children and her love for me.  

Then I remember her saying, “I love you”.

Then I know our good memories are still being built.

Tuesday, December 11, 2012

Better is Better

She’s better, she’s pretty much back to normal, for her, I would say we are back to baseline.  Better is indeed better.

It took a few days, it took some angst on my part, it took first rate care on the part of all who care for Marty, it took a lot of gator aid, Diet Coke, soup, Ginger Ale, cranberry juice and Imodium, but we got there last Saturday night, about three days post hospital.  That’s when Marty got back to her normal hypertensive self.

The week of the relatively simple illness was so reminiscent of the bad old days when I was constantly aware of Marty’s mortality and how close we walked to that line and how easy it was to cross that line.  The feelings of anxiety, fear, uncertainty came rushing back quicker than I thought they would.  The thoughts of how do we survive this quickly took over the living of our life from the moment she vomited.

It has made me realize and appreciate how smooth our life has been over the last months.  Certainly life has not been without trial and fear, but it’s been supremely manageable, it’s been almost normal, in our own perverted way.  The low blood pressure, the low oxygen, the illness itself brought back the fretting, the fear and the insecurity of the past medical crises. 

It’s funny, when we are in the hospital, even for a few hours, I generally don’t feel the anxiety I do at our home.  A very surreal sense of calm and confidence suppresses the fear and anxiety churning in my chest and head.  I sit there and provide data to the doctors and nurses, I repeat myself over and over again, I tell our story, I tell Marty’s story, I give her a face, I’m doing something, it calms me.
I know the security the hospital provides is mostly an allusion.  Bad things do and will happen in hospitals.  I’m not sure why I feel more secure there.

I suspect the ability to run blood tests, check urine and perform x-rays and other diagnostics often provide me with some clarity and maybe a false sense of security.  The tests are positive actions that provide concrete data; I like concrete data, even if the data turns out to be…. I don’t know what’s wrong.  Ultimately, the diagnostics help provide more transparency to what is going on with Marty.  I like knowing.

I also suspect that in some small way being in the hospital alleviates part of the burden of making decisions regarding the criticality of issues.  While you can’t leave all of the decisions to the nurses, they help a lot with perspective, like “I’ve seen this a lot, not to worry” or “It’s a good thing you’re here”.

I get that the hospital signifies, for most people, for Marty who hates being hospitalized, a level of illness, a degree of sickness, a level of criticality that is beyond the ordinary fever, cough or puking.  I get that the hospital is populated with sick people and all kinds of nasty viruses, bacteria and medical mishaps and mistakes.  I get all of that.

It’s just that sometimes being in the care of attentive professionals, having technology at hand offers a level of reassurance we (I) simply can’t find at home.  As much as I hate it, as odd as it is, the hospital offers a perverted level of emotional and mental level of comfort.

Marty is better, she is back to where we were, she is feeling well, eating, drinking and a little hypertensive.  Better is better and as the days of better mount we once again move away from medical crisis mode and the bad old days kind of recede into the back of my mind, still there, not forgotten, but repressed enough to sit comfortably in the living room with my Marty and laugh at high brow television like Duck Dynasty.

Saturday, December 1, 2012

She's Sick

It’s been 34 months since we last spent the night in Providence Hospital, an enviable streak for the chronically broken among us.  

We busted the streak Wednesday.

Caregiver Nykkie came in that morning about 7 a.m. and rousted me from a deep sleep, from a sleep aided by one of the few mornings cold enough in central Texas to cool down my sheets.  It had been a good sleep.
Nykkie gently poked my bare shoulder and said, “I’m sorry, but I don’t think Marty feels good.”
It’s a lot like waking and looking at the clock and realizing you have over slept and you have 15 minutes to get to that important meeting, you get up putting your pants on and running, all of the sudden wide awake, all of the sudden moving from sleep to wide awake.  It’s an awful way to start the day.

Nykkie told me Marty had been vomiting and her blood pressure and oxygen levels were well below what is considered normal for Marty.  Puking in your sleep is not a good thing, puking for Marty leads down way treacherous paths like aspiration and dehydration.

I walked briskly down the hall pulling on my shirt from the night before, following Nykkie.  We got to Marty’s room, she was laying in her bed, pale, pallid, clearly ill.    This is an easy decision, “Let’s take her to the emergency room, now,” I said.

Nykkie, who had already, by 7 a.m., cleaned up the products of Marty’s illness,  moved quickly to get Marty dressed so she could get in a cold van and make the five minute ride to Providence Hospital.  I started the van to let it warm up, brushed my teeth, tried to tame my bed head and chased Maggie the dog down after she snuck out while I started the van.  Nykkie suggested a cap for my still untamed hair, I transferred Marty to her wheel chair and we were actually in an ER exam room with a nurse by about 7:45 a.m...

While we were waiting for the triage nurse in the ER I asked Marty is she was afraid.  I think that’s more for me than for her, I think in my own perverted way I’m looking for reassurance from the sick. 
She said, “Yes.”

I asked, “Why?” with my best reassuring tremble.

“I don’t want to admitted.”  She doesn’t want to be in the hospital.

I reassured her that it even if we had to stay in the hospital it probably wouldn’t be too long.  My hope.

Once in the ER we did X-rays, blood tests, urine tests, catheters, IV fluids and oxygen.  The chest X-ray was clear, the white count was elevated, her blood pressure was scary low.  Marty threw up once more for good measure before we made it back to the ER, but that stopped and mostly she slept through all of the needles and tubes.

Ultimately the tentative diagnosis was a stomach virus, the 24 hour kind that is perfectly miserable to everyone involved but extremely debilitating for someone in Marty’s condition.  She was very dehydrated from the puking and pooping and once they started IV fluids she started to perk up just a little bit.

By noon, sure enough we were up in a room on the 4th floor, where the nurses flocked around her to get her checked in and Nykkie and I went into our standard hospital mode.  She went to the house to give Maggie a needed outside potty break and to get our hospital supplies; me, I gave Marty’s story to everyone that darkened our door.

Marty ate, she drank, she was given copious amounts of IV fluids and eventually her blood pressure started to even out to a normal range for a normal person.  It took several hours.

Great and Wise stopped by that evening to reassure all of us that this seemed pretty simple.  He felt good that it would be just short stay; I told him I wasn’t counting this against our 34 month non hospital streak.  

Renea came that evening to relieve her Nykkie, her sister.  I went home about 8 p.m. confidant my bride was in good hands.  We had met the night nurse and Renea, always right and always in charge, who never takes anything off anyone is the perfect person to represent Marty.

By 7 a.m. Great and Wise was back again to spring us.  We left without incident about noon, a 30 hour stay.

Since coming home Marty still feels, to quote her, “Crappy.”  We have struggled with her energy, her blood pressure and her nausea.  I have had to call Great and Wise once to get him to talk me down from the anxiety wall I was climbing.  In my mind, we ain’t done with this yet.

My experience tells me to do this one step at a time and just deal with what is in front of us, don’t try and make plans for longer than what is right in front of us, don’t try and deal with what we don’t know, don’t bury anyone yet, don’t start the eulogies.  I struggle with this many days, the hospital simply amps up the negative wave.  I know in my head not to imagine the worst; my stomach and my heart are hard to drag along.  I tend to fall back to the bad old days of endless worry about what is coming.

I don’t know what is next, I hope this turns soon and we get back to our baseline.  The best we can do is make Marty comfortable and watch and care for her in ways that make sense.  One step at a time, I keep saying it, one step at a time.

Wednesday, November 14, 2012


It’s a contest, a test, a test of endurance.

Chronic illness is the supreme test of what a human can stand, what they can endure and still live a satisfactory life.  There is nothing fancy about it, nothing heroic about it; it’s persevering through the awful, hanging in through the grim, being dogged in living, and ultimately enduring what life brings.

Years ago one of our good friends father contracted cancer.  Our friend, as he watched his father endure chemotherapy,  said that it was a contest between which would kill him sooner, the disease or the cure.  It was a matter of enduring, out lasting the healing poison.

I watch Marty, I see how she quietly endures with dignity all of the pain and the indignities that come as a result of the strokes.  I watch and see how she fights against the disease and the disability, I see how much she wants to be something else, I see her resigned to endure.

I see Marty, I see Marty who once thrived and reveled in autonomy, independence and privacy.  I see Marty, I see Marty who was controlling, who was intellectually curious, who strived to know more and do more.  I see her tirelessly endure the loss of those things she so loved about herself.  Losing the best part of ourselves is always the worst.

Marty endures.  She endures the invasion of her privacy, she endures the fear of losing herself, she endures the pain in her head and in her hand, she endures the poking, prodding, pushing, rolling and doctoring, she simply, quietly, resolutely endures.  

She puts up with, she endures, my incessant nagging to cough, to sit straight, to swallow, to look at this, to look at that, to respond.  She endures me, my impatience, my micro managing, my controlling nature, my short comings.  She endures her own self-consciousness and the eyes of those outside our sphere; she endures her self-doubt, her fear and her sorrow.  

We both endure the restrictions, the monotony punctuated with the occasional crises.  We both endure the loss of what once was, what might have been, what should have been.  We endure, we endure together.

You don’t survive; you don’t endure because that’s what you choose.  You survive because there are no other choices.  Some things, some events leave you no other choice but to put your head down and take one more step.  That’s the way it is at our house, there are no other choices, we are not capable of quitting, so enduring is the only other option.

I know the disease or caring for those with the illness can eventually wear you down, I know there are times Marty feels she cannot continue this marathon.  I know when one more thing breaks or one more infection comes, or one more rash appears both of us want to throw our hands in the air and scream “I’m crying Uncle, I’m not running the race anymore; I quit.”

Quitting, giving up, crying uncle, it’s not our nature, it’s not human nature, it’s not what we as humans do.  We endure; we take another step in a long line of steps.

Enduring, hanging in there, can, slowly, inexorably, over time, grind on you to the point you simply want the point of pain to go away, however it can.  The constancy, the every day, every week always there nature of a chronic illness can quietly invade and conquer any resolve you might have and start to infect you like a disease.  The repetition of the pain and angst can wear you down and make you someone you don’t recognize and don’t want to be.  

You have to resort to the whole concept of eating the elephant one bite at a time.  All you can do is one more hour, then one more day.  Endurance is not about seeing the end of the race; it’s about taking the next step, running to the next curve, topping the next hill.  

I am amazed by Marty, I am amazed by her capacity to live and smile and endure, every day.  Her life is not what she planned, she would not have wanted to be in an endurance contest…..but she is and she endures with grace.

Saturday, October 20, 2012

Last Ride to Dalhart

We waited for the call, knowing it would come soon.  Thursday, Marty’s brother Jerry, called and said their mother, Jean, had passed away early that morning in her sleep.  Jean had been sick for a long time; Jean had a long trip home.

I waited for a while and told Marty about her Mom as we ate lunch. She knew it was coming, we had talked about what was going on, still the news clearly startled her.  The reality and the overall sadness of the loss of her mother came over her all at once.  We talked for a while, slowly and quietly.   Marty said she recognized it was time but it was really, really sad, her mother was gone.

For a lot of reasons we decided to have the funeral quickly, on Saturday.  We immediately started getting things in gear for the trek to the wilds of west Texas one last time.  It normally takes me a few days to get everything and everyone ready for the odyssey.  There’s a lot of stuff to pack and get together and we needed to arrange for one of her caregivers to go with us.

We have really great people helping Marty, we are lucky.  After rearranging her life, Nikkie, the mother of four and keeper of Marty, said she would go, said she wanted to go, said she wanted to be with Marty as we buried Marty’s mother, her last parent.  

By 10 a.m. the next day, Friday, Marty was cocooned in her pillows and we were driving from the dark dirt and oak trees of central Texas to the red dirt and flat expansive plains of the panhandle of Texas, 500 miles.

Jean’s passing represents our last family tie to this remote Texas community that has been such a large part of our life.  It’s sad to think about but I suspect this is the last trip Marty will make to her hometown.  I can hear doors closing.

As we drove north through Decatur, Bowie, Wichita Falls, Okalaunion, Chillocothe, Vernon, Quanah, Childress, Memphis, Clarendon, Claude, Amarillo, Dumas Marty and I talked about how each of these towns provoked a memory of past journeys (at least when Marty was awake).  

We have driven this road countless times, at all times of the day or night, through all kinds of weather.  We have looked for alternate routes, we have gone other ways, but there is just one really good way and that’s the way we drove this time, Hwy 287 across northern Texas.

We drive through Wichita Falls that actually has a real water fall, man made of course.  This has always been our first stop on our way up from Waco, assuming everyone had been asleep for the first three hours of the trip.  We stop for gas, a bathroom, and a sandwich.  

We then turn west and pass the electric generating station at Oklaunion and move into the town with the best name on our trip, Chillocothe.  We have stopped there more than once either going or coming at the Dairy Queen.  There are a bunch of Dairy Queens in Texas and I personally like Dairy Queen, they have good tacos.   Marty and the kids didn’t think too highly of DQ.  They allowed me one Dairy Queen stop per trip.

After Chillocothe you blow through Vernon where there is a dead Gibson’s department store.  Gibson’s was the precursor to Wal-Mart but it died, probably because of Wal-Mart.  You make a big right hand turn (there aren’t that many turns) in Vernon past the golf course over a dry river bed.

Quanah comes next.  Quanah is named after Chief Quanah Parker, a legend in Texas.  They have a huge arrow stuck in the ground at their football field.  We spent the night one time in Quanah at the one motel they had at the time.  It looks pretty run down now.  For those of you that are members of the mile-high club you have nothing and Marty and me, we are members of the Quanah club, I bet there aren’t that many of us.

After Quanah comes the biggest city between Wichita Falls and Amarillo, Childress, it‘s like 5/8 of the way to Dalhart from Waco.  We have spent several nights in Childress and often stopped there for gas and a bathroom.  Childress is also where the elevation apparently changes because on each trip when Erin, our daughter, was younger, would start to get car sick and need to puke.  She had something screwy with her Eustachian tubes and almost always got sick at least once on the trip, Childress was the starting point.

After Childress you have to drive through Estelline on your way to Memphis.  Watch your speed in Estelline; it’s kind of a speed trap.  We stopped there once at a picnic area with the youth from our church on our way to New Mexico.  

You then drive through Memphis which also was a favorite Dairy Queen stop.  It was in Memphis that you began to feel like you were going to make it because you were less than 200 miles from Dalhart.  

You then proceed through a little community called Lelia Lake.  I once told Erin when she was really impressionable a story about how a young lady, Lelia, drove her horse drawn buggy into a nearby playa lake and drowned.  I said she was running away from her father, Judge Clarendon, because he hated her lover.  After she died they named the lake, Lelia Lake.  I also told Erin kidney beans were chicken kidneys, she believed that too for a long time.

Clarendon, probably not named for the fictitious Judge Clarendon, is full of memories.  Marty and got stuck there in an ice storm the Christmas after her first stroke; it was our first trip after the first one and before the second one.  We spent the entire day in little Clarendon and drove all of the streets.  It too has a great Dairy Queen where Marty slipped and fell and there is a Pizza Hut where we discovered that David, the 17 year old son of family friends, had his tongue pierced.  You could see the stud glinting in the sun when he opened his mouth to eat the pizza.  His Mom was a bit perturbed.

Down the road is Claude and just past Claude I always started to drive a little faster because the destination was drawing closer.  In the daytime you can tell you are getting close to Amarillo because you can look across the flatter than flat plains and see the trucks driving down I-40 heading east and west.

I have always loved Amarillo.  It’s a nice size and is the home of the Big Tex Steak House, a huge helium reserve and the Jesus Christ is Lord truck stop.

Years ago we tried to spend the night there on a late night trip but had trouble finding a motel because of a Jehovah’s Witness convention (true story).  After trying several spots one man finally referred us to the Amarillo Seven Inn in downtown Amarillo.  Marty cautioned against it, but I was tired and ready to sleep.  We pulled up and paid the guy standing behind the bullet proof glass as our son Matt said, “We are definitely going to lose our hood ornament.”

I think the room was like $35 and when we got it unlocked and shoved the sticky door open it was a dark, dingy, skanky room.  I said, trying to be optimistic “Not too bad.”  Marty and Erin took one look at the plastic lawn furniture they used for chairs and in unison said, “I’m not staying here”, and went back and sat in our car to protect our hood ornament.  We left and drove into the early morning hours.

You turn north in Amarillo on one of two paths, one takes you through Dumas, an easy but slower drive.   Dumas has a Braum’s Ice Cream where Marty’s Dad always had to stop for a restroom break, yeah right, it was an ice cream break.

You could drive faster on the other path and it took you through Boy’s Ranch and through shallow canyons where you could see Saddle Mountain and the floating mesa a local wealthy eccentric, Stanley Marsh, had created by erecting a light blue fence just under the flat top of the mesa.

For year’s Matt, our son, called mesas, a “mesa yonder”, because that’s what he heard his Papa say, “See that mesa over yonder.”

This time we drove through Dumas and past the Braum’s without stopping.  We pulled into Dalhart about 7 p.m. on Friday.  Marty’s brother Jerry, his wife LuAnn and their daughter Kelly greeted us as we checked into the Holiday Inn Express, the best over night spot in Dalhart.  We ate at the Bar H, I fretted over Marty and how tired she must have been, our kids came in from Dallas and I suspect we will talk about times past.   

I know I have too often focused too much of my attention on the destination.  When you look back at the journeys they were really pretty cool.  

I’m not sure when we will pass this way again.