The Cards

It’s a little dangerous when I start organizing, I never seem to finish.  I didn’t get very far because I’m easily distracted from tasks that kinda suck.  Mostly I was side tracked by a treasure trove of old cards, cards from about ten years ago, cards to Marty in the aftermath of her ruptured aneurysm.  

When Marty was in ICU at Zale Lipshy Hospital in Dallas people would send cards to our son’s address in Dallas or our home in Waco and friend Sue would truck them up to Dallas when she visited.  The cards were from all over, friends from church, Marty’s high school and college friends, strangers from other churches, little kids from Sunday school, from our own kids and our family.  I saved all of those cards, bundled them up together and stuck them in a filing cabinet.

I would sit by Marty’s hospital bed where she lay in a coma with tubes coming from all parts of her body, draining fluids, breathing for her and feeding her.  I would sit there and read her the cards and read her the notes inside the cards, often several times.  It was a way to stabilize the chaos in my head, a way to drown out the constant hum of the respiratory equipment and the tones of the machines measuring Marty’s life forces and maybe a way to reach into Marty’s consciousness.

Reading those cards kept me connected and reminded me of the love and caring of others. I read the cards to Marty hoping somewhere somehow she heard their message….we love you, we are praying for you, wake up, get up, recover.

After Marty regained consciousness I once again read her all of the cards she had received.  I sat by her bed, amazed she was finally awake.  I read each card aloud, to my miracle of a wife who was still missing the left front part of her skull, had matted dirty hair from lying on her back for six weeks and still had way too many tubes coming from all parts of her body.  

I read the cards to her, each word, several times, sometimes multiple times during the day.  I wanted her to feel what I had felt when I first read her the cards.  I wanted her to feel the connection to people outside of our new world that was centered in a medical center; I wanted her to hear the encouragement and pleas of her friends, old and new, to move, to recover, to get well.  I wanted her to know how many people loved her and the cards helped with a very simple message, you have been laid low but you have not been forgotten. 

I read her the encouraging words from Jane Ann, the words of love from my brother John, the words of comfort from Sherry, the words of prayer from complete strangers from a friend’s church, I read her the simple words from children.  

We read them over and over again as Marty came back to life.  We read them as she went to a regular room, we read them as she sat up in a wheelchair for the first time in weeks, we read them as Erin cut off her dirty, matted hair.  I took the cards to comprehensive rehab and read them to Marty as she started getting stronger and the miracle of her recovery continued.  I read the new ones Amelia and Joe and Ellen and Luan, I read the old ones again and every time she would listen and ask, “Now who sent that?”  It was proof she was recovering.

I’m a big connectional guy.  I hate to feel isolated and away, I need, and I mean need, to feel close to the world, to my people.  The cards did that for me and they weren’t even meant for me, they were for Marty, the woman fighting for her life.  

For Marty, they meant something even more, they reminded her of who she was, in a strange kind of way they brought her back to her world, to her friends and to her family.  From very simple words, from very simple cards, from very thoughtful remarks she was reconnected to life.  

Of course I read through the cards again instead of focusing on the reorganizing task ahead.  It’s strange that these simple pieces of cardboard still carry power today.  I will let Marty hold them and read them again and then file them away one more time.  

The cards and the words and the people who sent them are our treasure.

An Undetermined Amount of Time -- The 2nd One -- Part IV

 The 2nd One -- Part I -- Back Again

The 2nd One -- Part II -- Pneumonia 

The 2nd One -- Part III -- I'm Pissed 

I remember sitting in the waiting area of our new temporary home, St. Catherine Center, a sub-acute care center in Waco.  It was adjacent to the hospital we had just left and was king of a way station for people too sick to go home, but not acute enough to be in the hospital.  

I remember waiting for her room; they were running a little behind in getting it ready.   I remember how cold she seemed sitting pale and hunched over in her wheelchair as I pulled a blanket tight around her shoulders and rolled her chair into the sun.  We both felt completely lost, afraid and alone.

It was the middle of January, 2006, and we had just moved from the hospital where Marty had stayed for about two weeks as the result of her 2^nd stroke and a mortal fight with pneumonia.  We had just recovered from her disconcerting overnight warehousing in a surgical recovery area and I had just recovered from being massively angry and guilty from not being able to protect my very vulnerable wife from the overcrowding at the hospital.  We were now in a new environment and I clearly remember wishing I was smarter and more capable than I was.

We sat there for what seemed an eternity, alone, cold and pathetic.  It really probably wasn’t that long before a pleasant certified nursing assistant came and took us to Marty’s semi-private room that was to be Marty’s home, my home for an undetermined amount of time.  I hated, I still hate, undetermined amounts of time.

The room was gray, of course.  There were a couple of windows, a hospital bed, a phone, a television and a single overstuffed chair that folded out into the single most uncomfortable sleeping device known to man.  

Marty was exhausted from sitting in her wheelchair for the transfer from the hospital.  She was still incredibly weak and seemed so frail and it was the first time she had sat in her chair for an extended period of time.  A couple of attendants carefully moved her to her new bed and she slept.  I fretted, I paced, I stressed, sitting alone in the room with Marty while we waited for the physical therapist to come and evaluate her to determine our next steps.  

The therapist eventually arrived and I felt like I was being evaluated as she pushed and prodded and bent Marty, it felt kind of like a trial. I wish I knew then what I know now, I could have been a better advocate, but back then I was hoping against hope that Marty would walk again, she would be able to care for herself again, she would regain some of what she was before the 2^nd stroke.  I was naive and didn’t understand where life had taken us.

Marty rested for a couple of days and started taking antibiotics for a urinary tract infection.  I slept at night next to her in the bed from hell.  Marty never slept alone at St. Catherine’s or for that matter anywhere.  She was just too vulnerable, people with brain injuries need an advocate, I eventually became a good one, but that was much later.

Our kids did the most remarkable thing any 20 something’s could do; they regularly and willingly spent the night with their mother and gave their father respite.  As I look back at what Matt and Erin did, what they willingly did for their mother, for me, I’m amazed.   We all were spending the night stealing and stacking plastic encased pillows on an awful bed without any privacy watching over your very brittle mother.  One word and I hope they know, amazing. 

The hours we spent at St. Catherine’s morphed into days and the days folded into weeks.  I was with Marty most of the time.   The embarrassing upside to this is that I saw every episode of Dawson’s Creek. When I wasn’t there our children were, or my family, my father even took a turn encouraging Marty on the arm bike.  The week days were filled with therapy.  

Physical and Occupation therapy were done a simultaneously in a large room filled with tables, mats, poles, crutches, slings and other broken people trying to heal.  They worked with Marty sitting, trying to get her to touch their hand as they moved it around her, that helped her balance.  They put her in a swing and pushed her back and forth to work on her equilibrium.  They had her use an arm bike and they slowly started training me, showing me what I could do and what I shouldn’t do.

I was like a father watching his young child playing baseball for the first time.  I encouraged, was discouraged, I was proud and at times a bit embarrassed by Marty’s inability to stay awake and focused on the assigned tasks; it was like trying to get your child in the outfield to quit the daisy hunting.  I didn’t know, I didn’t understand how much Marty needed to sleep, to rest, to recover.  It took me three years to understand how hard and exhausting everything was for Marty.

I went with Marty everyday for speech therapy.  Again, cheering her on, hoping she would remember things from the day before, and hoping that the electrodes fixed to her throat would help her to do something as basic, as simple, as swallowing liquid without choking.  Therapy was the same thing every day of the week, the work didn’t seem much but it exhausted Marty every day.

One of the things I didn’t understand from the first stroke was the adverse affect strokes have on swallowing.  It makes sense because her whole left side had been affected  and because of  that swallowing regular fluids or regular food would cause chocking or aspiration.  Stroke patients, based on the results of swallow studies, x-rays while eating barium coated food, get either regular food, soft mechanical, or pureed; all self explanatory. 

Marty ate pureed food and drank thickened fluids, the texture of the food helped with the swallowing and choking.  The food looked awful.  There would be the brown food, the green food and the orange food.  The drinks were all as thick as honey, the water looked like paste.  Marty ate and drank and never complained, not one time, not one day.  She ate for survival and she drank whatever I put in front of her.  I think one of the most remarkable parts of Marty’s recovery was her ability to eat things that were to the eye, inedible.

The undetermined amount of time felt like an eternity, a stay at the Hotel California.  When the therapy began to wane because Marty wasn’t making enough progress, because they knew Marty wasn’t going to physically progress much more, time virtually stopped. That was when the speech pathologist first mentioned Pate Rehab in Dallas.

On our last afternoon at St. Catherine’s, in the blowing April wind, I helped Marty into a van taking her to Pate Rehab center in Dallas.  We started on the next step in our journey; I packed for an undetermined amount of time.

The First One -- Summer of Recovery

The summer of 2005 was different. I wasn't employed but I was working, I was full of anxiety and working extremely hard, working for Marty. When we came home in June I was terrified. I didn't know what I needed to do or how to do it. Daughter Erin helped get me organized with all of Marty's medication -- there was a lot. Friends offered varying degrees of support but I knew Marty and I had to do this ourselves.

Marty kept going to speech therapy to work on her short term memory. I would go with her and sit with her during the sessions and try not to answer the questions for her. I still don't understand why I would get so anxious if she didn't know an answer or couldn't remember the three things she was asked to remember. It was like when the kids were playing Little League baseball, I didn't want them to feel bad about striking out but By God they needed to hit the ball. I didn't want Marty to feel bad about forgetting the three things -- but it seemed such a simple thing. But, it's only simple if your brain hasn't been assaulted.

Marty's memory got better and better, the therapy really did help. She did not have any swallowing issues, hell, I didn't even know about strokes and swallowing issues until so much later.

Marty was clearly weak and her affect, her personality, which had always been pretty hot and volatile, was now very flat. She didn't seem overly sad, but she didn't get really happy anymore, it was just pretty flat. The vasospasms had burned out some of her anger and passion. Remarkably I found I missed that.

In July we finally went back to Zale-Lipshy in Dallas for the doctors to make Marty's head round again. Since April she had been missing the front left part of her forehead. In July they gave it back to her. It sounds so simple, yet we are talking about messing with another person’s skull. It's okay if we are talking about your skull - but this was my wife's skull.

The surgery went well and again we came home. I wished they had told me about some of the after effects of the anesthesia. When we got home Marty's level of confusion was amplified, her cognition simply was not very good. I was more than a little distressed, I was horrified. We had worked so hard for so long to get back to a base level and now it seemed we had taken a giant step back.

I remember sitting in the bathroom crying, I was just emotionally exhausted, I really didn't think I could do any of this any more, when Marty shuffles in and pats me on the shoulder and said, "It's going to be okay". The woman with the stitches in her head, the woman who should have died, this woman crawled out of her bed and came to comfort the man who was supposed to be giving comfort. She may have lost part of her fire but she didn't lose her love. I know I have told this story countless times, but it was a moment of epiphany for me.
As the Texas summer melted all of us Marty continued her recovery. We stayed with Speech Therapy, her memory got better and Marty slowly became more and more independent. We had Marty's 51st birthday party in August. It was a meaningful celebration; not just of her birth but her continued life. She sang with her all female chorus and enjoyed the company of friends and family and I cried. Somewhere in all of this I became a real titty baby -- I couldn't stop the water works at even the dumbest of things.

We got through the summer and the fall. Marty's independence and stubbornness about things increased. She wanted to drive herself where she needed to go, I eventually relented after going on a couple of white knuckle test drives (I don't ride with anyone well), she wanted to go to lunch with friends alone, she wanted to eat when she was ready and she wanted to control her own medicines. All of this was my Marty, all good signs of recovery.

In December we went to a Psychologist for cognitive testing. The results showed her IQ had been damaged but she could still be reasonably independent though it was also clear she would not work again. Marty's once dynamic personality was different, she was much quieter and internal; I had to carry pretty much all of the conversations. This was hard for her kids, it was hard for her friends, it just wasn't the same Marty, but she was alive, walking and caring for herself.

At Christmas we went to the panhandle of Texas to be with Marty's Mother for her 80th birthday and to celebrate Christmas. We then went to the mountains in New Mexico to snow ski.

Somewhere alarm bells should have sounded in my head. I really should have thought better than to take Marty to the mountains where the air is thin. We had to cut our trip short and come down early because it was just too much for her and she simply felt lousy. We came down, spent the night in Dalhart and then drove home to Waco. Then on January 3, 2006, on our 30th wedding anniversary our world exploded again.

The First One -- Part IV -- Home Again

To paraphrase the great sage, poet and all around good gal, Amy Winehouse, "They tried to put us into Rehab and we said, yes, yes, yes". From my perspective comprehensive rehab was the next step to getting better and going home. It was a new vista with new concepts, ideas, terms and goals. It was a foreign land but a land we wanted to visit.

It just happened one day; as suddenly as we went to Dallas we were back in Waco at Hillcrest Comprehensive Rehab. We met a new Doctor, a new Physicians Assistant, new nurses, new therapists and new social workers. It was new.

In any comp. rehab program the patient has to be able to work, participate in therapy for three hours a day. As I understand it this is a Medicare requirement and frankly one that makes sense. Rehab, therapy is hard; it requires a lot of focus, willingness to extend oneself and a strong desire and belief in healing. It can work wonders. I was very concerned about Marty's ability to be able to withstand the rigor of the program. She wasn't very strong, she hadn't been out of ICU that long and she had just started to do even the most rudimentary things like, sit up. But away we went with all of her tubes and such.

The first couple of days proved out my concerns. The trip from Dallas to Waco exhausted her and starting therapy was slow and largely unsatisfactory, but the therapists were patient and in spite of my own insecurities Marty began to grow stronger and more capable almost daily.

There are several kinds of seminal moments in this particular part of our trial that kind of stick out for me:

• Marty's good friend Sue had the courage to take me aside and say we needed to cover Marty's head. I understand it was disconcerting for the uninitiated to see her with the big "divot" in her forehead and being a guy I never thought about it. I brought one of my caps from home, a guy's hat. One of the nurses, just kind of out of the blue brought Marty a woman's pink cap. She liked that better, and then our other Gail and Sue brought Marty a couple of caps, one of which said, "Under Construction". We still have them.

• I walked into rehab one day, a big day as it turns out and I saw my Marty, with the help of a PT, walking down the hall. She walked about 50 feet. She was wearing her pink hat and support hose; maybe the most beautiful thing I have ever seen.

• After they took out the catheter Marty would not stay in bed. If she needed to go the bathroom she would not wait for help. They set the alarm on the bed and Marty immediately figured out how to turn it off. Marty also managed to pull out all of her other tubes, she was tired of them. First she took out the tracheotomy, and then she removed the PIC line in her arm. I found them both on the floor at different times. Marty was back.

• Marty's return was never exemplified more than when she escaped. She had been hospitalized at Hillcrest several years before for minor surgery. She remembered going down and out to smoke. It was her routine and she by God wanted to smoke. One afternoon when I was out, right after therapy finished for the day she managed to wheel herself onto the staff elevator. She didn't have the wherewithal to go down, so she went up, she just knew if she could get outside she could smoke. They found her pretty quickly on one of the upper floors.

• Marty quickly moved from exhausted and bed bound to mad bored and she was really hard to keep entertained. Weekends in rehab, when there is no rehab are torture. The kids came down, friends and family came in, but it just sucked.

June 8, 2005 we went home, 66 days after Marty should have died, after Marty should have been completely disabled, we walked to the car, got into the car and drove home. I had to take lessons on how to handle Marty's newly discovered diabetes, we talked with Social workers about support, and we knew we had one more surgery left, the one to make her head round again, to replace the bone plate. Regardless of how scared I was of my new role and responsibility, on June 8 we walked into our home again.

Post Script --

Now the question -- still on my bathroom wall is a calendar. It's a rather ugly calendar; it has the front cover of the Saturday Evening Post from the 1920's. Some waif like woman with a flapper's kind of hat, and the calendar is stuck on April of 2005. I have not been able to bring myself to take it down. Within the next weeks we are going to remodel that bathroom. I don't know if I can take the calendar down and leave it down and I don't know why.