Monday, April 25, 2011

Simple Conversations

For us the Easter weekend passed unmarked but not unnoticed, there were no Easter eggs, bonnets, white gloves, church, or the Toccata. Marty did get some ham for lunch, on her sandwich. Instead of the usual Easter trappings we passed the weekend at the lake, fishing, talking, and to quote Marty, “just being present in the moment.” It was good.

It was a simple weekend with simple outcomes, nothing profound, nothing earth changing, simply living for the day. In our world simple times are often the very best of times. Simple lets you breathe, lets you listen, lets you feel your life and lets you be “present in the moment.”

The wind was blowing much too hard to get out on the boat so Marty and I found ourselves sitting on our boat dock fishing and talking and enjoying the sound of the water as it fought against the wind. Our kids gave Marty a rod and reel for her last birthday and we finally got to christen it. The rod and reel is pink, it’s small, it’s ultra-light, it’s pink, yes, it’s pink and Marty likes it just fine and as it turns out it’s a fish catching machine.

We caught white bass, black bass, crappie and catfish. We sat on our dock sheltered from the sun, with the wind blowing hard across the water. The wind kept the air from becoming too hot for April and pushed against the water creating waves which kept the fishing bobber bobbing constantly

Marty and I sat, fished and talked about life, about our life before and after the stroke, we talked about our kids, our grandson, our two expected grandchildren (I’m still shooting for one named Larry Bob) and how much we enjoyed being at the lake together. I was writing our last blog post about her 2nd stroke so I recounted to her all of the tales of both strokes. She’s heard them all before but she forgets which is okay because I repeat myself all of the time.

We moved from talking about life and living to death and dying and then to all of the things that have changed and what we have lost because of the strokes and even found some things we have gained because of our renewed need for each other.

While we were watching the waves move past, the tips of our fishing poles move up and down with the rhythm of the water and the wind Marty said, “I wish I could have a conversation again.”

This is not news to me, it’s a part of her she really misses, it’s a part of her I really miss, but it’s a part of her that’s not altogether gone.

“Like what we are doing right now?” I replied, trying to point out that we were having a great conversation.

“Well, you’re doing most of the talking,” she said, looking at me.

That’s the change, I never really carried our talks, I never really was the conversationalist in our partnership, Marty was.

“Okay, I got that,” I said, “But we are having a great conversation and you are a part of that and I love it.”

She paused, looked at me, checked the bobber on the end of her line and said, “Yes I am too.”

The conversation slowed as we sat and talked quietly as we watched the sinking sun slid just over the horizon and cast a colorful orange and blue hue across the sky. Simple moments often make life time memories. This was a memory for our life.

Sunday, April 24, 2011

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

I've been working on a chronological series of posts about Marty's two strokes.  These are links to previous posts on the 2nd stroke.  Thanks to all for reading and following.

The 2nd One -- Part I --
The 2nd One -- Part II -- Pneumonia

When they came and got her it was a surprise, we weren’t expecting the move. They came after visiting hours and it was dumb luck that I was there at the time. They moved her from ICU to a surgical recovery area which was really no more than a hallway because there was no room in the inn and they desperately needed the room in the ICU. Apparently the hospital is a very popular place at the first of the year.

Marty had been in the ICU for about ten days. We were just a few days removed from pneumonia, an allergic reaction to antibiotics and precipitously low blood pressure. She had started to recover as much as one can from the assault of a stroke and it was time to move to a regular room.

Instead, they moved Marty and her hospital bed to the corner of a little alcove in the recovery area just outside of the operating rooms in front of a nurse’s station; it was like she was in a darkened hall. She had two companion patients, two sleeping men right beside her with just barely enough room to pass between the beds. . The nurse saw he pissy side of Marty’s husband. It wasn’t her fault, she clearly drew the short straw and was charged with caring for these three displaced patients, but I needed an outlet for all of the angst, anger and emotional trauma of the last two weeks and I had found it, Providence Hospital.

Marty, even in her drug and stroke haze, could see me seething. She mouthed and whispered the words, “It’s okay, I’m okay here,” as she tried to assuage my roiling anger. I kept saying to the nurse, “This is simply not acceptable, this is third world, this is absurd,” thinking if I could phrase the complaint just right she would correct this idiocy. I apparently didn’t find the right phrase.

I am a wonderful complainer and crusader when necessary. I found it necessary and was in the administration office of Providence Hospital at first light the following day. I started with the nursing manager in pursuit of a goal to talk with the CEO of the hospital. As I said, I found a focus for all of this pent up rage and fear I had been collecting for two weeks and I was a man on a mission.

I started at the bottom and ended up, not with the CEO, but with the Chief Operating Officer, Otis. By the time I met Otis the COO we were in Marty’s regular hospital room, out of the surgery holding area. Otis came by Marty’s room and tried to explain to a distraught husband why this good hospital would shuffle a patient away for storage as they had my wife.

As I talked to Otis, extracting my pound of flesh, I realized most of my anger of the night before was initiated by a feeling of failure, a failure to protect and care for Marty. I knew I was doing everything I could to help her yet I couldn’t make sure she didn’t spend the night in the hall with three strangers. I felt like I had failed, I felt incapable of doing the one job I had in this deal, ensure Marty’s comfort and safety. The hospital’s overcrowding had removed one more level of my control.

All of us are imbued with the instinct to protect. Whether it’s to care for your spouse or protect your child or watch over an aged parent, our instinct it to stand in front of our most vulnerable and ward off danger. I was following my instinct; I was frustrated in my most basic need and instinct to care for Marty. She wasn’t in any real danger, but the move and how it was handled pricked the very essence of my maleness.

In retrospect I realize the people in the hospital were truly between a rock and a hard place. They had done a lousy job of communicating and preparing, but it was cold and flu season and the place was full of flu and elective surgeries which had been put off in celebration of the holidays. In retrospect I know I hadn’t failed Marty and any sense of control over our situation was really no more than a relic of our past, the time before the strokes. The truth is control in the medical milieu is nothing more than a hope and rarely a reality.

That day I did what I needed to do, purge the emotional bile in my system. Marty was safe, or as safe as one can get in any hospital recovering from a near death experience. Her words, “I’m okay here,” suggested her perspective was much better than mine, I just couldn’t hear anyone at the time.

We stayed in that room one night and in the afternoon of the next day Big John came to pick Marty up and start us on the next part of our journey, St. Catherine’s Sub-Acute Care Center.

Thursday, April 14, 2011

Large and In Charge

Marty was always in charge in some form or fashion. I think she would have said she covered up part of her insecurities by being the smartest person in the room and in charge. She was well read, researched, verbal and in control. Almost every dispute we ever had was about control and trusting the other to be in control, so I have to confess to the same proclivities.

Marty was never a particularly trusting soul. She was always little bit skeptical of people, their motives and their willingness to help, until she really got to know you and until you had proven yourself trustworthy. She trusted herself, a lot of the time she trusted me, but not completely. I understand, total trust, total belief that you can sit and there will be something under you when you sit does not come easy for most of us. For Marty, it’s critical.

When we help Marty move from one chair to another we help pull her up, pivot her on her right leg and then slowly begin moving her down to a sitting position. As Marty bends at the waist and knee and as the helper supports her, she sits, blindly, in whatever chair is there. Most of the time she doesn’t look back, she doesn’t reach back to check for a perch, she simply trusts that there will be something under her when she sits.

Mostly, she has to trust me, believe that I will care for, believe that I will not abandon her, believe that I will do what is in her best interest. That’s a pretty tall order for Marty and I want to emphasize the words “has to”, I think it pains her essence, but she has no choice but to trust me and the others who are here to support her.

I’m often reminded of the old team building, trust building exercise where one person stands on a chair and must fall backward without looking into arms of the group, hoping, the group will catch you. If you were to get dropped once, if you were to feel yourself falling through the waiting arms at all, the trust is busted.

This is Marty’s life, everyday, numerous times, with a wide variety of people; let her slip once, let her feel precarious at all in moving and her trust, which must be a constant, is shaken. This extends to me, the caregivers, the nurses, the doctors, everyone who interacts with her who she must rely on, believe in and trust.

Before the strokes when Marty went to the doctor, because of her background working in the medical community, there was always a question of who was the most knowledgeable about her particular situation. She did a lot of work understanding medical issues, she knew and felt much more comfortable working with medicine, not letting medicine direct her or her care. She could be an awful patient, but she was an immaculately informed and educated patient.

Today, I do the research, I ask the questions, Marty must trust that I will ask the right questions and be immaculately informed and educated. She must trust that her wonderful doctor, Great and Wise, knows what he is doing. Every now and then I can see in her eyes how really hard it is for her to let go, how that informed skepticism is still omnipresent.

I have to trust him too, and while he is a wonderful doctor, this is my very vulnerable wife we are talking about and I’ve never been very comfortable standing on the chair and falling backwards without looking and constantly checking. This is where I Marty teaches me.

At some point in time in your life you have to learn to trust the people who surround you. It helps if you can surround yourself with kind, loving, intelligent people. It’s not necessary to have blind trust but you have to have the courage to trust that the people who love you and care for you won’t pull the chair out from under you when you sit. It’s not an easy thing, especially when you’re used to being in charge.

Monday, April 11, 2011

The Naivety of Hope

Hope is one of those integral pieces of humanity that drives us forward. Our hopes, our aspirations help make this an amazing country; I believe it’s what has pushed our country to greatness. Our country’s success, wealth and power have less to do with capitalism, democracy, personal freedom, or wealth of natural resources than the simple act of hope. It’s all about a wealth of national hope and optimism, hope is the driving force to our success.

Now, I base none of these brilliant assertions on research, facts or statistics, why bother with facts when we are talking about dreams. Why else would salt of the earth blue collar workers worry about spreading wealth when they don’t have wealth? Why would someone who doesn’t own a business, like Joe “the I’m not really a plumber but I can dream can’t I” Whizbutt , object to a higher tax for people netting a million dollars a year? Because they hope, we hope, we dream that some day that rich person will be us and we are already protecting our perceived wealth, or at least the potential for that wealth. Hope doesn’t have to be realistic to be powerful.

Hope for a better life brought the early settlers to this country, hope drove people west, hope gave rise to a new experiment in democratic government and hope brought the country through the dark times of a civil war, a depression, and multiple world conflicts. Hope pushes us to new worlds and the stars and sometimes to decisions that are really counter to our own best interests.

Hope of riches brought us a mass produced car, hope of discovery brought us the stars, and hope of a new intellectual frontier brought us the information age. Without hope in the dynamics of this country would there be a Bill Gates, Steve Jobs, Warren Buffett or George Soros? I believe it was the undying hope and optimism in our freedom of creation that brought our country innovation and wealth beyond compare.

Hope is what keeps critical illness from taking over your mind. Hope helped us moved AIDS from a death sentence, hope keeps the parents of the child with cystic fibrosis pounding on their child’s back to help them fill their lungs, hope keeps the cancer patient going back to chemo even though it makes them deathly ill. Hope is real miracle of any medicine.

I understand hope, even unreasonable naïve hope. I’ve had it, I have it, I hope to always live with it. Hope drove me through the dark days of the ICU, our unknown future and multiple trips to rehab, hope of better days kept me sane; hope of progress against the insurmountable kept me from giving up on recovery. Hope for Marty and I means accepting a new life.

I suppose all of this hopey stuff makes me a little naïve, but that’s just fine with me. I have tried it the other way, I have tried to be cynical, I have tried to be suspicious of everyone’s intentions, I have tried to find the failure in ideas, it just doesn’t work for me, it’s now who I am. I would rather be a little naïve, a little abused by life and people than to lose my optimism, my hope, my aspirations.

I’m not sure where we heard it but when Marty was in rehab from the second stroke her mantra became, “I’m better today than I was yesterday and I’ll be better tomorrow than I am today.” A simple call to hope, a simple declaration of moving forward, those words are still repeated from time to time in our house and they still hold true even these many years after her last stroke. It’s our constant hope.

Saturday, April 2, 2011

Death Did Not Become Her

This is the day, the day six years ago she should have died, most do. She should have gone but decided through miracles and sheer will to stay and to continue to be. She was changed, she was hurt, but she continued in my life, in our lives. She continues today to make me better than I was before April 2, 2005.

I don’t go past this day, without remembering, remembering the day, the times, the fears, tears, the outright denial and the ultimate victory. I wonder if that is wrong.

I remember she sat in the blue leather chair our big yellow cat ,Bubba, had used as a scratching post the first day we had it in our house, the scratches leaving small but noticeable scars on the chair to this day. It’s funny what is stuck in your mind’s eye. She sat in the chair holding her head, first with her elbows on her knees, her head held between her two hands, then sitting back with her head leaning back against the chair, moaning.

Her words, “This is the worst headache I have ever had,” a recognizable harbinger of something deadly. If you feel it, if you hear it, the hospital is the only place to go. Don’t wait, don’t be a hero, don’t tough it out, get help quickly or you will pass.

The memories of that day six years ago are clear and omnipresent regardless of the day, but those feelings of fear and chaos are exposed like a raw, naked nerve on this anniversary, April 2. The police, the ambulance, the young red haired doctor with cowboy boots, my complete lack of understanding and feeling of futility, Marty’s confusion, the calls to the children, the hurried shower, the ride to Dallas, the Parkland ER, McDonalds at midnight, the surgery, the realization of the severity, the exhaustion, the love of family, the loneliness, the night, the fear of the unknown, the relief of survival, and ultimately a drug induced sleep.

Matt, Erin, Sarah and I all rejoiced the simple victory of surviving April 2 and moving into April 3. The trauma to that magnificent organ, the brain, was so foreign, so frightening it was impossible to absorb. My ignorance, my denial of the future saved me at the time. If I had understood or could have foreseen the following days, weeks and months I would have been completely washed away by the tidal wave of reality.

I listened to the doctors day after day not completely understanding the miracle that was Marty. It wasn’t until much later that I began to understand how, through the art of medicine and the tenacity of Marty, she had survived against the odds to stay, to be, to live a few more days. It never occurred to me at the time we were living a miracle.

On this day I remember the fear and the pain, but I also recognize the miracle and the magnificence of Marty’s survival. On this day I recall how close we were to losing and celebrate Marty’s victory and recovery. On this day I am thankful for the six more years we have had, on this day, in spite of the frailty of the human body we can do nothing but rejoice at the strength and determination of the human. On this day, in spite of all, Marty still is, and for that I smile.