Thursday, April 26, 2012

Memories Fading

Memories erode and fade with time.  Like water and wind over the earth, time shapes memories and removes pieces of what once was.  Memories change and fade with time and become nothing but blurry pictures of what was. 

Marty’s first stroke was seven years ago and slowly, but noticeably, the memories of what was are changing and fading and I’m afraid we are left with what is.  I hate it, losing those memories, losing that tenuous hold to what was and I struggle to keep those precious memories of what and who Marty was before the stroke. 
Memories of Marty walking, talking, arguing, teaching, and pontificating live and in color are slowly but surely being sacrificed to time and are being replaced by the woman I know today, the miraculous woman irrevocably changed by the strokes.

I want to always be able to picture her in my mind, leaning over the kitchen counter, chin in her right hand, listening intently to the inane story I was telling.  I want to be able to remember the sound of her voice as she talks about something equally inane.  I don’t want to ever forget the feeling of her standing pressed against me, her arms wrapped around my neck and shoulders, her breathe falling on my neck.  

But it’s going away, those visual and tactile memories, replaced by what we are today.  I feel powerless to stop the erosion.

Since the strokes I have always worried about people who didn’t know Marty before, how they would never know who she was or what she was.  Now, with time, I worry that I will forget.  I want to remember, I want those memories, that depth of understanding of who Marty was to stay clear, to stay crisp, to stay fresh, but time is wearing me down; time is making what we were before, stale.

There are so many things I need to remember --- 

I want to remember sitting on the front porch of a rented house on 6th street in Lubbock Texas with Marty.  It was 3 a.m. and Marty and I had just split a bottle of Montezuma’s Tequila, a particularly noxious but cheap tequila.  She had brought the bottle and insisted we share it after coming over the previous weekend and finding me drinking tequila with another female friend (really, just friends).  I didn’t know at the time but she was a bit jealous.  I remember the night; I remember how cool the concrete porch felt against my cheek when I laid my swimming head to rest on the porch.

I remember when Marty and I jumped into swimming pool, fully clothed one fall night.  We were walking home with friends and just happened by the pool at a random apartment building.  We looked at each other and without saying a word jumped in the pool, fully clothed.  It was cold, we were wet and we walked home, we were starting to really become one.

I remember sitting on a worn out rickety bridge in an old burned out ghost town of a tourist stop outside of Lubbock called Rimfire Village.  We sat there one Sunday evening with a friend and watched the sun disappear as storm clouds pierced with lightening rolled across the vast open expanse of the west Texas prairie.  It’s not as clear as it was, but the memory of sitting with this young woman I was starting to love still affects me today.

I remember meeting Marty’s father for the first time with her holding my moist hand to reassure me.  I remember going to parties, talking at dinner, having babies, moving, new jobs, old jobs, new arguments and old loves.  It’s all there, our whole life together before the strokes, but the time, the age, the pressure of life between then and now has started to cloud important details.

I want to remember her old laugh that’s deep and rich and not cut off because of the strokes, her smile that’s not crooked from the brain damage, her sharp wit and humor that hasn’t been dulled by the disease, her walk that hasn’t been eliminated by the paralysis, the independence that hasn’t been swept away, the arguments, the embraces, the kisses, the smells, the confidence she could give me with her words and her smile.  I want to remember and embrace all of those things that made her uniquely Marty, that made us who we are.

I don’t want those memories to go away or to be compromised, and they are.  I can’t remember them well enough, the memories aren’t sharp they are faded and ragged, the seven years since the stroke are slowly taking them away and it scares me.

Marty is still here, she is still with us, I still love her very much, and she is still the most amazing woman I know.  The strokes have created a very different person.  While I honor who Marty is today, I mourn the loss of who she was and I don’t want to ever forget who and what she was to me and to others.  Seven years doesn’t seem that long ago, but it is time and time takes away.  

I want to remember.

Wednesday, April 11, 2012

Cheating Death

Just north of Waco a woman from Iowa was killed.  She was driving down I-35, a crowded, fast, bone-crushing interstate connecting all of North America.  She was driving north when a tire flew out of the bed of a south bound pick-up flew and through the windshield of her car and instantly killed her.  It was a tragedy, a death of inches and seconds.  

The strokes and the aftermaths of the strokes brought Marty close too many times.   Marty has cheated death, she has pushed through death, she has lived through things others do not survive.
Death, the end of all, I’ve seen it when I didn’t know it was there.  I’ve seen it when the fear of it was completely suppressed by the urgency of the moment.  I’ve seen it when I stood beside and over her pleading with her not to go, not to succumb.  But, I really haven’t seen it at all, I am ignorant of death.

Sometimes, I think I think about it too much.  I know when we first came home after the 2nd stroke it was on my mind every day, every cough, every sneeze, every breath she took.  The thinking of death, the worrying of Marty dying pushed away any semblance of living our new life.  Talking about what happened, understanding the impact of what happened helps with the obsession, it helps with perspective, it helps with focusing on what is important, life itself.

The first stroke, the ruptured aneurysm should have killed her.  The rupture, the bleeding, the surgery, the infections, the vasospasms, the hydrocephalus should have taken her.  They didn’t, she lived, she recovered, and she came home.  I didn’t understand at the time that death was so close. It never occurred to me, the very real possibility of Marty dying was not real; my innocence shielded me from reality.

Weeks later, after multiple procedures, after multiple brain-jarring events, after the ICU and in a regular hospital room I saw it up close.  This time I could see it in her face as she turned blue and couldn’t breathe, this time I was there right beside her.   I was barely awake when I heard Marty cough once and then start gasping for air.  I stood over her as she struggled in the bed to try and pull air into her lungs and couldn’t, the color in her face started to fall away, replaced by a light blue tint as I pushed the call button to get help.  

Nurses and a respiratory therapist came immediately and began clearing her tracheotomy and clearing her airway allowing oxygen to fill her lungs.  Her skin began to return to a more normal color as I sat to the side on the hard built-in couch in the sterile room.  The event was over, it was then I could feel the fear of the moment, the fear of the consequences of that event take hold of my brain.  It was only after the she almost suffocated, only as the lights went off in the room, only after I lay down on the hard couch did I finally confront how close we had been and how afraid I was as I laid in the dark watching over Marty. 

After the second stroke, about a week into her hospital stay Marty contracted pneumonia and was put into the ICU at Providence.  The infection she was fighting in her weakened body took a heavy toll and she was incredibly weak.  I stood over her early one afternoon as her blood pressure registered just above death.  

Looking down, I saw Marty inflamed from an allergic reaction to one of the many antibiotics they were pumping through her body through one of the many tubes connected to her.  Her feet were elevated to push blood to her brain and they were running fluids into her as fast as possible.  She was weak, she was quiet and barely aware as I stood there and pleaded with her not to go, not to leave me yet, I was not ready to let her go.  Apparently, Marty wasn’t ready either and through sheer will, through the miracle of modern drugs, through grace, she stayed and pulled away from death once again.

In the grand scheme of life I don’t have a lot of experience with death and dying and I don’t really know much about it.  Frankly, I’m not looking for anymore hands on experience than I already have.  Through Marty, through her courage and her willingness to think and talk about dying I think I understand a lot more about my own fears and misconceptions.  Through Marty’s faith, through her grace, through her comfort with the end I think I have lost part of my fear of death and dying. 

I don’t think I believe that God reaches down and plucks any of us from the jaws of death.  I don’t think I am comfortable saying that God reached down and continued to breathe life into Marty each time she seemed on the precipice of leaving life.  I don’t think God was involved in a tire bouncing across the interstate into some poor soul’s car.  I don’t think it works that way, I think living and dying is much simpler than an act of God, we just break.

What I do believe -- Marty and I still have stuff to do.  I do believe Marty and I have places to go, people to see, and more life to live.  I believe that there are still moments of laughter and smiles for us; I believe there are tears we still need to cry and I believe it is always a lot better to focus on the living and not the dying.  Sometimes, sadly, it just happens. 

Friday, April 6, 2012

Singing a Song

The living room was empty, quiet.  I walked through and heard a soft song, barely audible coming from behind a closed bedroom door just off the living room.  I stood at the door and listened quietly, I heard this gentle, sweet singing, “I’ve been working on the railroad…..”  

I knocked softly on the door and took a chance and slowly opened it trying not to make a sound.  Sitting in the middle of the bed was our daughter, with her daughter, a blue-eyed cherub, a Gerber baby look-alike.  Erin was cradling Lily Jewel in her lap, swaying backing and forth, tending her baby, singing a familiar song, singing in a way that was her mother almost 30 years ago.

Marty insisted that we always have music in our lives.  We sang to our children loud and often. The singing filled the time, filled the quiet and seemed to soothe both of our children.  As I looked in the bedroom that day I saw life come full circle as I listened to Erin sing, watching her holding her baby, rocking back and forth, soothing Lily to sleep.  I was taken back to the days and nights spent singing songs, rocking and holding tight.   

I didn’t know a lot of lullabies, “Rock-a-by-Baby” somehow seemed a bit cruel, what with the bough breaking and all and I struggled remembering the words to “The Missouri Waltz” though I can still hum the tune.  Marty and I tended to the classics, “You are My Sunshine”, “Working on the Railroad” and of course the famous Disney piece, “Do Your Ears Hang Low”.  The latter piece we eventually changed to “Do Your Boobs Hang Low” to keep the kids attention.

The rocking and singing centered in a large rocker recliner in our living room.  It had a kind of checked cloth upholstery with large, scared wooden arms, it was really pretty ugly but it was very functional.  Marty’s father bought that chair for me because he thought all men should have a recliner; he didn’t know it would have a higher purpose.  

In our house, whoever was holding the kid had dibs on the rocker.  I can still remember Marty holding Erin or Matt and slowly rocking back and forth, cradling an infant, singing a soft song and slowly caressing their cheek. 

I didn’t know then how much I needed to remember those small moments, how important each of those little tiny events would become.  It is amazing how haunting those small glimpses of the past become when the present becomes so radically different from what you had envisioned.  It is amazing how often we overlook these small impactful moments only for us to try and revive those events years later when they are but tiny shards of a slipping memory. 

My recurring lament is my beautiful grandchildren will never get to sit in their grandmother’s lap as she sings to them, as she rocks them, as she teaches them the little songs of our lives.  I feel a sense of loss that these gorgeous lives will not be shaped by this woman.  I want for them what Matt and Erin experienced, a full-throated, passion loving, possessive, controlling woman named Marty.  The strokes not only robbed me and my children of years from her they took too much of her passion and fire from these new lives.  

Then I see Erin, an image of her mother.  The miracle of the cycle of life is that Matt and Erin, whether they try or not, whether they are aware or not will do unto Noah, Lily and Emma what was done unto them.  They will shape these children in ways that are familiar to our family, to the lives we have lived; to the songs they have heard all of their lives.  Through them Marty will impact the lives of their most precious gifts, their children, and through those children, probably unbeknownst to them, Marty will live on and shape their hearts and minds forever.

That afternoon, as I peaked in the bedroom, as I watched Erin and Lily for scant seconds that sadness, my lament, my grief, was assuaged just a bit.  I watched and in my daughter, through Erin, I saw Marty, I saw her cradling that tiny life, I saw her years ago with Erin in her arms singing a song.

Monday, April 2, 2012

Choosing Our Paths

I’m not a “road less traveled” kind of guy; in fact I kind of steer clear of that road, too many weeds, cracks in the pavement and just general sweat.  I’ve always been prone to find the path of least resistance.

I learned early on the power of saying, “I don’t want to do that.”  Doing “that, that way” was too hard, too much trouble.  Walking the easy road reduced the anxiety of trying something new and it reduced the chances of failure, but it eliminated parts of life that could bring joy and success.

It’s not one of my favorite personality traits; it’s something I have to be on guard against. 
It used to drive Marty a bit nuts and she did her best to call me on it each time she saw me missing out on pieces of life because I was settling, settling for the easy way, the path of least resistance.

I depended on Marty to question me, to push me to look at my chosen path and to ask, “Why are you doing that, wouldn’t it be better if….”  Every day she challenged me and insisted I look for alternatives.  It’s not hyperbole to say she really did press me to a more fulfilled life.  I miss that part of our interchange; I worry about not having her at my back, pushing me to choose a more challenging, fulfilling road.

In 2006 I took Marty to Dallas for what I felt like was the best, most intensive traumatic brain injury rehab center in our part of the world.  Then, in May, about two months after going to this facility, after a couple of miserable hospital stays, we came back to Waco to let Marty heal from the multiple pneumonias she had contracted while in Dallas.  It had been a monumentally discouraging and frightening eight weeks.

I had reached out to Great and Wise to please bring us back to Waco to heal.  God bless his soul, he did and we spent a couple of days in Providence Hospital and then went back to St. Catherine’s for some sub-acute care.  It was there, at that time, at that moment, we, I, had to decide about the rest of our life, about Marty’s future.  My penchant for the path of least resistance was tested.

I tried to come to grips with where we were in Marty’s recovery and how much more ground we could make.  I tried to remove what I wanted from the equation, hell; I tried to figure out what I wanted in the equation.  Did it make sense to continue to struggle in institutional rehab care, was there any real hope of big life-altering changes, was this as good as it would get, or would Marty be better off just going home and living her life at her own pace on her own schedule?

I struggled with the decision.   Do I fight for more time, do I fight for more work with physical therapy, with occupational therapy or do I just take what we have and go home?  Because of my history with taking the easy way out I worried that I was settling, that I was choosing the path of least resistance, that I was doing what was easy for me and not what was best for Marty.  In my mind I could hear Marty, “Is that really what you want to do?”  

When Marty broke her arm in 2010 the choice was surgery or just let it heal as I was.  Again, how, without Marty looking over my shoulder, how do I make sure any decision I make it not just following the path of least resistance, is not just what is easiest for me?  

Surgery for Marty would have been very risky but it probably afforded a bit more future mobility of her arm.  Simply doing nothing but immobilizing her arm, treating for pain and letting it heal avoided the surgical risk and avoided the trauma of surgery for Marty and everyone else.  Doing nothing, letting the bone in the arm knit together without the surgery was safer, was in most ways,  physically and emotionally easier for me in many ways.  

The question I asked myself then and still today, two years later, was it best for Marty or was it easier for me?  I struggled with my intention; I struggled with the demons from my past that too often directed me.

Now we have the tooth.  It’s not a world shaker, but Marty has a cavity in a back molar that is not a particularly healthy tooth anyway.  The wonderful thing is we have options, the hard part is, we have options.  Marty, who once would never let me take the path that was easiest, says, it doesn’t hurt, leave it alone.  The dentist begs to disagree and is full of talk of caps, crowns, bridges, implants and sinus lifts.

My job, figure out what is the best care for my wife given the circumstances left by the strokes.  Do I follow Marty’s lead and do nothing, which would certainly be easy in the short run?  Do I just say, pull the tooth, again an easy, relatively minor procedure, or do I push Marty and get work done that will require a lot out of all of us and cause Marty pain and expose her to some risks?  What is the best route and how do I ensure that this decision, like all the others, has less to do with me and more to do with what is best, safest and most beneficial to a full grown wife that can’t advocate or decide for herself?

I don’t know. 

I will do what I always do.  I will talk it and ruminate it to death; Marty has already jumped me for belaboring the tooth.  I will research the implications of the options, I will ferret out what a sinus lift really is and what the side effects are, I will talk to Great and Wise and I will do my very best to check myself to make sure what I decide has more to do with Marty than with me.

The road less traveled has never been my road; I’ve never even read the book.  The strokes have put Marty and I on a road that few have traveled; I’m still getting used to that.  I want to what’s best for Marty, not what’s easiest.  

Now if someone will just tell me what that is I can quit worrying about that part of it.