Wednesday, July 27, 2011

Subbing for Marty

The call came late in the evening as I stood at our front door and watched as the city repair crew dug up portions of our street to repair the very obvious water leak.  They worked until the very early morning hours to restore our water service.  The only real consequences were no bath for Marty that night and it threw me out of rhythm, and we all know I’m a very rhythmic guy.

Then the call came from my number one son-in-law, a halting, kind of plaintive call asking a simple question before getting to the larger question, he said, “Hey Marty’s Husband, what’s going on?”
Marty’s Husband, “Not much son-in-law, how’s things?”

“Oh, not too hot, your daughter is not doing well; she’s got a really bad headache and has been throwing up.”

“That sucks,” I replied with more fatherly concern than it sounds.

“Yeah,” son-in-law says, “I wonder if you could come up tomorrow to help out with Lily?”

The question itself was simple, straight forward and belied a very simple courage on the part of son-in-law.   He saw a need for his wife, my daughter, and a need for his daughter, my granddaughter, and called seeking help.  I can remember trying to squirrel up the same kind of courage, call and ask for help.  I didn’t do it very well or very often.  My son-in-law clearly loves his family.
My instinct in changes to our rhythm, in any changes to my schedule is to go with the real easy, “Oh, I can’t.”  “Nope,” has always been my unfortunate fall-back position.  My brain ran through the list of things I needed to do in Waco, I needed to pay bills, I needed to exercise, I needed to be with Marty and the damn water was off and she didn’t get her bath.

In the back of my mind came the old arguments Marty and I used to have, she would want to do something different, my instinctual response was no.  Instinct can be limiting and Marty hounded me to not always start with “nope” but to simply think before responding, to think what was really important, to focus on what could be better than just the same old.  

I paused, took a breath, took a mental accounting of what needed to happen for me to leave early the next morning, pushed away from my baser, selfish instincts and said, “Of course I’ll come.” 
Of course I would go; helping with my granddaughter was the priority, not the paying of the bills, not the gym, not the rhythm of life; of course I would go.

As I lay in bed that night I couldn’t help but think how much and how often in many situations like this our family misses Marty being Marty.  It was in her nature to be the matriarch, the Victoria Barkley, of this family.  She would have been right in the middle of helping, maybe to the point of too much.  She probably would have driven up that night, she certainly never would have thought about not going and she would have severely chastised me for even having an inkling of not helping. 

Our new normal mandates that I substitute for Marty, that I try to fill in the gaps the strokes took from our family when they struck Marty.  I know I cannot be Erin’s mother or Matt’s mother, I know I’m a substitute for the real thing.  I’m a pretty good substitute, the spirit is willing, but I am replacement for the real thing none the less.  Marty was a good mother.  She was a different kind of mother, one prone to profanity, one prone to telling dirty jokes, one prone to listening to you cry, one prone to offering the best and most qualified advice.  

I know how much both of our children have missed Marty’s presence, her advice, her confidence and her intimate involvement.  I know there are times in her life, when Erin feels Marty’s absence, Marty’s inability to mother, the most.  

Marty and Erin, mother and daughter, so very much alike and often at each other’s throat, only to be followed by whispering in each other’s ears and laughing out loud.  There is no bond like a mother and daughter and I think a woman wants her mom when she has her first baby, Erin gets her dad.

Marty is painfully aware of her lack of a maternal role.  I’m aware that she feels less than, that she feels guilty, that she feels she is not doing what she was intended to do. Marty’s response to my quick trip to Dallas, “Poor guy, that’s what I should be doing.”  I love that she knows, I hate that she knows.

I did the parental duty and loved doing it but, as always, missed Marty.  I didn’t wish she was pre-stroke Marty to relieve me of my responsibilities, I mostly wished she was okay and functional so she could have the same joy I did as I sat on the couch feeding our precious Lily.   I wished she could truly feel and give voice to the pride in our daughter and her husband in how they are caring for dear Lily.   I wished she could connect and feel the power of holding and feeding the vulnerable and the innocent.  

That’s where we are, the agony and the joy of recovery six years post stroke.  Marty is aware of what’s going on, she’s aware of what she can’t do what she once did.  What I hope Marty knows, what I want her to be aware of, is how much what she has been, how much of what she is today impacts my thinking and my doing.  I want her to know how much of what she was as a mother is being lived out by both her daughter and her son in how they care for their own children.

Thursday, July 21, 2011


“All I want is peace, just some peace and quiet.”  The reply came from our caregiver supreme, Erica.  It was her birthday and I had asked her what she wanted to do for her birthday, “All I want is some peace.”

Linda, an acquaintance, a friend, wrote to me, “I just want some peace.”  Her reply came when I told her we missed her, that we missed her nice, that we missed her humanity.  “All I want is some peace.”  It seems so simple, it seems so reasonable.

It is so simple, so reasonable, but so elusive.  

I can remember waking up in the middle of the night with the stress of the previous work day banging like cymbals in my head.  I know about the incessant  worry of the coming day, the coming decisions, the inevitable conflicts, the tension of working in the business environment, the conflict of dealing with what you wanted to do and what you felt you had to do.  

“Just give me some peace,” is what I begged for every day.

For four months I felt so much relief when my release came through from my corporate prison; I felt I could find that elusive feeling of peace and contentment.  It was a brief respite as the impacts of the strokes rapidly closed in on both Marty and me.

After the strokes, when we first came home and for months after, when it was one infection, one illness, one hospitalization after another the same hunger was there, “just give me some peace, give me some relief from this worry, from this fear.”  

Pre-stroke Marty dealt with the same ache, the same search for peace.  She suffered from the stress, the strain, the constancy of being a mother, a daughter, a wife and a psychologist. 
“I just want to breathe, I need some peace,” she would plead from time to time as the anxiety of everyday life, of being everything to everyone would mount.

In the day to day of our lives, in trying to do everything for all, in confronting all of life’s conflicts, all of the world’s conflicts we lose peace, we lose contentment, we lose the ability to sit and sigh and enjoy the small things and enjoy the simple quiet of a moment, of a lifetime. 
Marty was not a passive, easy-going woman.  She had strong ideas, strong opinions, and a lot of roiling emotions, both good and bad.  Marty and I managed to find a way to argue over small, inane things, or we could fight over big things.  So often we toiled in our marriage over nonsense that made life harder that took us farther away from the elusive peace we both sought.  

In a way the strokes have brought peace to both of us.  Once we got past the constant emergency room visits and the all day everyday concern over illness I found I could care for Marty and help her live with her disabilities.  Helping her, discovering my tolerance for the unknown, and finding a heretofore unknown ability to help has brought me the peace I always wanted.

The strokes burned out a lot of the anger, the angst, the fear Marty had as a parent, a wife, a daughter, and an employee.  That part of her that would not allow her to feel good about her skills, that part of her that constantly whispered to her that she wasn’t good enough was destroyed.  She lost a lot of really good things in the process and I’m not sure she would willingly take the trade, but so many of the issues that created a war in her mind and her heart are now gone, subdued by the trauma to her brain.  In many ways she has been left with the peace of mind and heart she so often sought.

That doesn’t mean Marty is content.  She has never been content, she is not content today.  When I ask if she feels peace and contentment now, she replies very simple, “I feel at peace, but I’m not content, I want to get better.”  That really sums it up for Marty, she will never stop trying to be better, to heal, but she recognizes that she has found a peace of mind, a peace of heart.  

It’s not perfect, that perfect peace that seems so desirable, it’s not even peaceful all day every day.  But I no longer wake up in the middle of the night worrying about the coming day and Marty isn’t constantly fighting against herself.  We are where we are, we are what we are.  I hate how Marty and I got here, I hate everything that is lost, but I love that out of all that has happened, inner peace is a part of it.

Tuesday, July 12, 2011

Living with Dying

A million things, a million decisions raced through my head as I stood in the ICU looking down at Marty.  From the moment we got to the hospital I started planning, I started plotting to find a way out of this medical morass.  My denial of the complicated nature of her hemorrhage was a wonderful thing; it kept me sane, looking too far ahead, seeing what our future might be was emotionally deadly.

The simplest things are often the hardest.  The simplest things can often make the biggest difference.  Finding a way to deal with one event, one crisis at a time, finding a way to live our new life one day at a time was and is the single most important lesson I have learned over the last years.  

It didn’t come naturally; I was in business and management much too long.  I wanted to plan, I wanted to see the future, I wanted to know, to anticipate what was going to happen next.  I’ve never been comfortable with spontaneity or inconsistency; I wanted to be able to commit to something, I wanted to be able to plan ahead.  I wanted the comfort of a predictable tomorrow, a predictable month, a predictable year, a predictable life.  That’s what felt natural, safe and comfortable.  That is largely incongruent with catastrophic illness.

 After Marty’s first stroke it was one procedure, one calamity, one setback after another.  There were no days without some crises, the unknown was the only constant and all I wanted to do was see a safe tomorrow and take her home and get back to a sense of normalcy.  I focused on the end game; I continued to plan for the days ahead only to be disappointed by constant setbacks and consequential disappointments, every damn day.  

When Marty had the second stroke I was a bit more accustomed to the vagaries of big time illness, though I still kept looking ahead, looking to the future, seeking a trail for both of us.  With the experience from the previous strokes I should have known better, I should have been better at living, planning, moving on a day-to-day basis. 

When we finally made it home from the second stroke I wanted to be in the comfortable routine confines of home.  I wanted to see, live and feel a regular life.  Instead we started living with endless trips to the doctor, the emergency room and the hospital.  

When I looked ahead at our life all I could see was a horrible illness that was destined to end in death, that the only relief from this turbulence was the end of my wife.  I sat waiting for Marty to get sick one more day, one more time to get so sick she would die.  I was sure the next illness would always be the mortal illness.  I lived and planed her funeral every day because that’s all I would allow myself to see.

It wasn’t an epiphany, the angels didn’t wake me singing one morning, the clouds didn’t part, I don’t remember THE moment when Marty and I started living our life again by living each day, one day at a time.  I made a conscious decision to quit living in a dark future and instead tried to live in the moment and enjoy those series of moments. 

When you are dealing with a catastrophic illness where death is the ultimate cure it doesn’t mean you can’t live, you can’t enjoy all of the minutes, all of the days, all of the months and years before that ultimate cure.  At some point you must start living with the illness, not dying from it, you must forget the future and live each day.   Focusing on the day, focusing on the moment allowed us to begin enjoying life, enjoying each other instead of looking to a future funeral.

The single best thing I have done since Marty got sick is living on a more day-to-day basis.  Developing some sense of flexibility, learning to accept the vagaries of the day, giving myself over to the reality of our life has kept me sane.  I know by focusing on an unknown future I was limiting the quality of my life and the quality of Marty’s life. 

I’m not saying don’t plan, don’t recognize reality.  You have to plan, you simply have to understand your life, you have to look ahead to find help, doctors, equipment, legal advice and the like.  You need to have a plan for emergencies, you need to have tools, you need to know where the fire extinguishers are, you need to know where the hospital is, you need to have a will. 

You don’t need to plan a funeral every day of your life, you don’t need to borrow trouble, everything that happens is not a sign of impending doom and in most cases death is not waiting around the next corner.  A friend of mine once quoted her doctor as saying, “Just because you hear hoof beats doesn’t mean its zebras.”  It’s not always the worst case scenario.

For far too long I lived worrying about the worst case scenario.  For far too long I lived too many procedures in the future, instead of very simply focusing on what was right in front of me.  It’s still a struggle.  I still tend to want to plan everything and commit to nothing because things might go bad.  When I do it robs both Marty and I of the beauty and love of the present.  I don’t know how many more minutes we have and I hate to waste any of them.

Wednesday, July 6, 2011

A Legacy That Won't Die

I sat in Marty’s wheelchair with her sitting in the recliner to my right.  The house was full as we listened to the cacophony of pots, pans and voices coming from the people in our house.  I could hear the cries of hunger from the two week old daughter of my daughter, I could hear the voice of the son of my son chirping, “uh-oh” as he scratched his backside like a grown man, and I could hear the daughter of our daughter of the heart cooing at our dog.  

For Independence Day Marty and I celebrated with our ever expanding family and the growing family of the Patrick’s, friends we have known for 20 years.  It was an anniversary of sorts conceived by our daughter before she had her daughter to celebrate the years we have known this family.  These are people who have been in our lives through church, school, and community for as long as we have been in Waco.

The Patrick’s are good friends who know our family, who know Marty, who knew Marty before the strokes.  These are people, friends, who Marty touched, who Marty continues to touch who know and love Marty for who she was and who she is today.  These are people with a common history, people who have been a part of all of our major life events for the last 20 years.

The Patrick’s moved to Waco about the same time we did and we had stair stepped kids, all in the same church, all in the same school system.  Their Elizabeth is one year older than our Matt who is one year older than their David who is one year older than our Erin and their Andrew who went to the prom together their senior year.  We have skied together, we went to church together, we saw our kids grow up and graduate together, and now we are watching our kids bring other kids into our joined families, together.

Over the years we have seen multiple massive crashes while snow skiing, we have played golf in the snow, we have seen Pete sitting on a rock in the wilds of New Mexico trying to get cell phone reception, we have taken turns transporting and supervising kids at conferences, we have lived through graduations, weddings and now births.  We have seen Marty and Sue jump from the top of a houseboat, smoked cigars on a balcony and seen kids swim with the dolphins.  This family is part of who we are, their children are literally our children in our hearts.

Marty and her counter-part, Sue, raised these children and influenced these kids in ways we may never see or understand.  They backed each other up as the kids went through school, broke rules and lived their lives.  The old Marty, the wise-cracking Marty, the ribald Marty, the psychologist Marty touched the lives of all of these children.  

And now, as these children have added partners, John, Sarah, Leah, Lyle and Amanda, she will touch and teach these young adults because of their association with our kids.   And on it goes as they teach and care for their children, as they pass on what they have learned from Marty to Noah, Lila, Lily and babies to come.   Marty’s life continues through those she has loved, nurtured and taught.  

Marty had an impact on most people she met.  She certainly had an impact on our kids and the Patrick kids.  Marty had a strong personality and you couldn’t spend that much time around her and not be affected by her in some way, you couldn’t be with her and not remember things she laughed about or things she said.  

That effect will be passed on in some way to this ever expanding group.  As ours have taken partners, as theirs have taken partners, as these partners have procreated, a little piece, maybe a large piece of Marty will live on through their lives.  As they all grow and expand they will take some of the lessons, some of the laughter, some of the spiritual insight, some of the words Marty gave them and pass that on to their own.  Knowing that makes me happy.

I once worried that Noah and Lily would never really know their grandmother.  I once worried that the children of my children would not have a chance to understand how special, how funny, how raunchy, how independent Marty was.  I worried that all they would know of their grandmother is the old woman in the wheel chair. 

I don’t really worry about anymore.  Our children and our children of the heart will take care of that, they can’t help it; she is too much a part of who they are.  Marty will be an influence in their lives and in their children’s lives forever.  Marty’s legacy is safe.