So Many Closed Doors

I won’t say parts of Marty actually died when she had her first stroke, I can’t say that, it cuts too close.  I can say mental and emotional doors were closed forever on April 2 2005.  Even more doors were closed and nailed shut on January 3 2006 when she had the 2^nd stroke.  

Strokes do that, they shut down parts of the brain and change lives.

My natural inclination, what I feel I must do, is to point out that as some doors are slammed shut others open.  Not really, not all the time, not this time, not in cold, clear, real life. 

The brain is remarkable in the way it finds to reroute certain things, commands to different parts of the body find new routes, orders for speech get confused but interpreted in a new and different way, directives to walk go through new neural pathways.  Brain damage is not healed, burned out brain cells don’t regenerate, if you are lucky your brain figures out some detours around the locked doors.  

On April 2 the loud, aggressive, funny, proactive part of my wife stopped being.  On that day, almost ten years ago, the parts of Marty that were loquacious, argumentative, meddling, problem solving and intense simply disappeared.  She still existed, she still laughed, she still loved, she still lived, but critical parts of her, important pieces that made her distinct, pieces that I loved, ceased to exist.

I didn’t complain I was just grateful she was still alive and able to communicate.   I came to understand that the parts of Marty that were left were also parts I loved; it was just different, markedly different.  It was the new normal people confront when doors are closed.

The stubborn as a mule door, the doggedly insistent door, the part of Marty that wanted what she wanted was still there.  Her remarkable brain still worked enough to help her figure out she still wanted to drive herself, she still demanded to have some independence, she still had some very clear demands for her life.  While critical doors to her personality had been shut tight, others remained open and she was alive.

After January 3^rd more doors, more really important doors closed.  That stroke was more damaging, that stroke took more of Marty away forever.  The walking doors were closed, the sitting up independently door was closed, the right brain that controlled her left side was walled off from her left arm and leg.  Big, huge, critical parts of Marty were gone, there one day, gone the next.  I missed what had been just days earlier.

Marty was alive but parts of her, parts I loved, parts she loved, parts her children loved and needed, parts her friends admired were simply gone, there one day, gone the next.   I had thought we lost too much after the first stroke.  I should have been grateful for what had been left,  I should have relished the doors that remained open.  Too often we don’t understand that things can get worse.

It is surreal that changes, life altering cataclysms, happen in the time and the way they do.  A second, a minute, a miniscule interruption to blood flow and pieces that have been a part of you for decades are gone and you are irrevocably changed.  

The doors are closed not because Marty wants them closed, she argues the point, she fights the pieces of her that have died.  She wants to beat down the you can’t walk door, she hates the you can’t think clearly door and she badly wants to open the best grandmother in the world door.  But, they are all stuck shut, just like the windows her mother painted shut in her childhood bedroom.

Doors get closed; really important doors get slammed shut instantaneously and we are changed, we are never the same because pieces that were once there are walled off from us, like they have died.

It’s too hard, it’s too close to what really happened to say parts of Marty died on her stroke days.  Death comes in different ways at different times and in different phases.  

We continue to live, Marty continues to live and I’m truly grateful for the years in between the strokes and our new normal days.  Marty is different, so am I.  

I guess in a weird way that’s growth.

Yeah, We're Weird

We are a walking, talking, living anomaly when compared to the walking, talking, living outside world.  Inside our home, inside our family, the way we live, the things we do, our routine and rhythm are normal.  From the perspective of the outside world, from my own perspective circa 2004, not so much with the normal, from those views, our life is the opposite of the normal life.

I know Marty and I live an abnormal life because we used to be very “normal” and I recognize “normal”, for most of my life I was the very definition of “normal”. 

  

You know the old saw, look it up in the dictionary and you will find my portrait, my portrait from seven years ago, right next to the normal definition of “normal”.  We had two kids, two cars, a dog, a cat, a mortgage, two jobs, friends, family, conflict and resolution.  We had the typical middle-class life with the typical middle-class real and emotional junk.  

It’s amazing how fast the abnormal becomes normal.  It’s amazing how quick the adaptation process takes hold and what was once unbelievable, what was once completely and totally foreign,  becomes routine, becomes part of a new life, becomes who you are, what you are and how you live your life.

What we didn’t have seven years ago was a wheelchair, we didn’t have caregivers living in our house 24 hours a day, we didn’t worry about health insurance or the cost of health care, we didn’t worry about health in general, we didn’t have a potpourri  of medical equipment or a virtual pharmacy in our house.  None of that stuff can be classified as normal.

We didn’t have to worry about available handicap parking or if a building was accessible, we just didn’t have to do things that are now a routine part of our life, stuff that no one who understands normal would consider normal.  

Back when I was normal I didn’t like sick people, they made me really nervous.  I would never have thought that the life we now live, our new normal, would ever become everyday living for us.  I was afraid of hospitals, doctors and the people that frequented those places, you know, sick people. 

I was uncomfortable with disability; I was never comfortable with those afflicted with catastrophic, chronic illness, I never knew what to say or what to do.  I found it hard, uncomfortable to visit with clearly ill or broken people, I felt out of place reaching down to touch someone who was in a wheelchair, I was not comfortable with illness, certainly not devastating life altering chronic illness.  

The everyday things our family now experiences as normal life, checking blood pressure, monitoring oxygen levels, monitoring blood sugar, suctioning, and breathing treatments are not parts of most people’s lives.  Spending time surfing the web shopping for the right deals or the new device on the plethora of medical supply web sites becomes part of job.  Lifting Marty from her chair to help move her to another chair is not something I would have thought ever needed to be one of my skill sets.

If we are going somewhere for more than a few hours we take supplies, we take hygiene items, we take a nebulizer, we take oxygen, we take instruments and tools and the ever present wheel chair, it’s not normal, but it is what we do though, all the time.

Wheelchairs, using wheelchairs as a required means of transportation is not normal, figuring out how to maneuver a wheelchair through the maze of the world is not normal, advance reconnoitering to know if you can get a wheelchair into a restaurant, is not normal behavior.  It has become normal for us, it is now second nature, it is a part of how our whole family, me, our children, my family, her family, our friends, now have to live.

How do you get to where this is normal?  It’s really simple; you don’t think about it, you just do it.  You just haul the stuff, you do the procedures, you focus on the lifting, you let the wheelchair and all of the other pieces become vital tools of the house and eventually it all becomes part of the normal rhythm and ebb and flow of your life.

Our lives, the changes we have made, are a testament to the resilience and the ability of humans to adapt.   Marty adapted, I changed, the kids changed, Marty’s family accepted, my family accepted, we all evolved, just like other families who experience chronic illness or some other life altering event.  Human beings adapt, hundreds of thousands figure it out every day, thank God.

I can’t imagine living our life today with the eyes I had ten years ago, I couldn’t have done it, I wouldn’t have done it, we have all had our view of normal radically altered.  We couldn’t have survived without the ability to understand, to accept, to change, to evolve.  

I know our life today is not normal, it probably never was, normal probably only exists as a cultural figment of our own imagined ideals.  I know if there is a normal, we live outside the realm of what is generally accepted as normal, that used to frighten me, now, I just don’t think about it.

Hummin' for Jesus

Our minister stands at the front of the sanctuary every Sunday.  He’s a tall man, thin, graying, in love with his work.   He reaches into the water of the baptismal  font, pulls hands dripping with water up and lets the water flow through his fingers back into the font and says, “Welcome home, children of God.”

For Marty and I, this place, this church,  has always been kind of home, a place populated with familiar and friendly faces, a place with recognizable comfortable beauty, a place that more often than not nurtured our souls, a place where we were able to guide and nurture others.

This was where I saw my children grow in spirit and in life.  This is where what I thought I knew of life was challenged and evolved.  This is where it was safe to think and to be.  This is where my children stood in front of our congregation and taught.  This is where tears ran down my face as another infant was baptized.  This is where my daughter was married and my marriage was restored.  It is, in so many ways, home.

Like many of the places we have called home over the years Marty’s wheelchair, her strokes, our age have impacted how often we were able to visit and how much we have been able to reconnect.  All too often we have been strangers in this home and the time gone by has brought change.

We no longer sit in the front left of the sanctuary, we always sat in the 2^nd or 3^rd row because we came in through the front door and that’s where the church youth sat and we rode herd on the kids.  We no longer know all of the faces in the congregation.  We no longer have young charges to sit behind and hush as they passed notes and squirmed and made kid noises; we no longer stand and sing the hymns we know by heart or stand to say the creeds.  We no longer sit in total reverent silence as the prayers are read, as the scripture is read, as the sermon is preached. (The whole reverent silence might be overstated just a bit, Marty was never that reverent or silent.)

Today we sit in the back to be as unobtrusive as possible and because the wheel chair ramp is closest to the back.  Today there are no young people sitting in front of us, today I sit beside Marty holding the hymnal for her as the congregation stands and sings, today in the quietest parts of the service instead of bowing our head in prayer, Marty hums, “MMM, MMM, MMM.”

I’ve gotten used to the humming; its part of what Marty does when she gets a little anxious, a little bored, a little self conscious.  It’s why we go to the movies in the afternoon, it’s why we don’t go to poetry readings (like we would anyway, sorry), it’s why we try and avoid the quiet moments, “MMM, MMM, MMM.”

We sat in the back as Jimmie, our minister, welcomed all of us and Marty hummed.  We listened as Jimmie led us through the liturgy and Marty hummed.  We listened as the scriptures were read and Marty hummed, we listened as the choir sang an anthem and Marty hummed, we listened to the sermon and Marty hummed, we watched the parade of little children come tumbling down the middle aisle to participate in the miracle that is baptism and Marty hummed.

It tends to make me a little anxious, I really don’t want to offend anyone or distract them from whatever is happening.  I hated it for the poor young woman who sat in front of us.  At one point in time I gently touched Marty on the knee to get her attention and distract her from the hum, she looked at me and said in her outdoor voice, “What?”  She’s not even aware she’s doing it.  Great job husband, let’s make it worse and call more attention to ourselves.

I finally just settled into the rhythm of the service, the rhythm of the day, the rhythm of the humming.  It was a change in our home, our church, our worship pattern; it was more of what we have become.  It was not the quiet, reverent praying, it was humming, it was humming as meditation, it was humming to fill the silence, it was humming as prayer, it was humming for Jesus.

We are an evolving species.  That evolution becomes clear and stark in the face of catastrophic events, i.e. strokes.  Survival requires not only recognition of this evolution but acceptance; we must embrace the change to survive.  

I need to sit in that church and hum along with Marty, after all, people hum when they meditate.  I need to let the humming focus me on the prayer, on the scripture, on the song, on the sermon.  I need to hum with Marty and accept this is where we are; I need to very simply hum for Jesus, just as Marty does.  Hopefully the people sitting around Marty will find a way to evolve too then we call all hum for God.

I like going to our church.  Marty likes seeing her friends there, we love our minister and he has helped both of us shape our world view and helped us cope with our journey.  Going requires acceptance, going requires effort to break from the inertia of not going, going is being back home with all of the other children of God.  I like being home.

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.