Sunday, April 27, 2014

What We Have

I reached down and gently touched her head, pushing my fingers into her thick salt and pepper colored hair.  She stirred, just waking, looked at me through sleepy eyes and first said, “Scratch”, a command to scratch the back of her head.  The rule is, you touch it you scratch it.  

She then asked if we were going to church.  I said no, I was going to the gym.  She wanted to know why we weren’t going to church, I said, “Because it’s Wednesday.”  She looked at me, woke just a little more and said, “Okay”.

It struck me at the time; the evolution of Marty, my evolution, the evolution of our life was almost complete.  What had once been unthinkable, what had once been unbearable, what had once been a new “normal” was now just normal.

Ten years ago all of this was impossible, Marty lying in bed, unable to get out on her own, unable to care for herself alone, restricted in her communication and activity.  Ten years ago it was unthinkable.  

Ha….the unthinkable, the unbearable happens and you learn to bear it, you remake your life to accept it.

It’s a slow process.  It takes years, not months, to accept, or at least it took me years.  It really is a journey, a journey to normal.

I have mulled acceptance a lot these last months.  I have worried about the difference between surrender and acceptance, I have thought about what normal really is and if it exists (it does), I have thought about our journey and I have concluded we are still traveling but our old life has become a distant history. 

I have accepted and when I think of Marty I think of my Marty of today.  

Thoughts of what used to be; thoughts of what could have been have eroded.  I can remember Marty before the strokes but more and more I only see what she is today, not what she was yesterday.
I don’t know if that’s good or bad, I don’t think good or bad matters or enters into the equation.  It just is…….and while it is trite, overused and used as an excuse too much….”it is what it is.” 

I asked Marty on our drive to the lake the other day if she had gotten used to her post stroke life, if it had become normal to her and she said, after thinking, and after pausing to swallow her DC, “Yes.”  Succinct and to the point is the way she is today, that was not the old normal.

The old normal Marty would have taken that question and expanded it into every facet of her life.  She would have examined the implications and explained them to me in detail.  She would have understood how she really felt and why and after about 30 minutes of listening, I would have understood it too.  

Today we have evolved to a simple “Yes.”  

I will take “Yes”; I will take the quiet, introspective, agreeable, good patient that Marty is today.  “Yes”, there are times I mourn the loss she has experienced, the loss we have experienced, but I think I am finally moving past feeling the pain of what was so intensely.  I think I am slowly pushing what "used to be" to the historical archives of my brain and more and more I am, we are, accepting and living with what we have. 

Thursday, April 17, 2014

Pushing a Rock

Sisyphus, because of his hubris and pliable relationship with the truth was cursed to push a boulder up a hill, for the rest of his life.  He would get to the top and the damn thing would roll back down and there he found himself, perpetually pushing a rock.

Some days, sometimes, a lot of times, care giving feels like Sisyphus pushing the rock up the hill.  Care giving is constant, it is constant in its need for attention, it is constant in the ebbs and flows of life, it can be like pushing a rock…..up a hill….all day, every day, never sure when everything will go down hill.

When we first came home after the second stroke we were at the bottom of the mountain with a big ol’ dirty boulder sitting in front of us.  Marty was weak, sick, confused, afraid and helpless.  I was mostly dumb and afraid but we both stood behind the boulder and shoved, we were going to, together, push the damn rock up the hill, up to the top and stand at the mountain top and crow like a banty roosters.

Marty got better, not a lot and not very fast, but slowly, over time, she became more communicative, she didn’t cry all of the time, she used words instead of signs and we gradually started to learn ways to deal with her illness.  We pushed the rock up the mountain a little further, not fast, but we made steady progress.

Occasionally, in fact, frequently, we would find ourselves sliding backwards, we would push the rock up and instead it would go to the side and slide back down.  I was afraid, in some ways I still am afraid, we are going to slip and lose control and the rock will roll all of the way back down to the bottom, crushing both of us as it bounces and careens down the mountain side.

It’s been close a couple of times, the rock spinning almost out of our control but one of us managing to get behind it, putting our back to the boulder, and by digging our heels into the dirt we managed to slow the momentum until help could arrive to stop it from tumbling out of control.

Along the way, as we pushed, we found help, people to help us push, people to allow me to rest while they pushed.  We found help in our family, in medical providers and home care givers.  We found pushing as a team helps; it just makes sense, the extra muscle, more people controlling the tilts and turns, keeps the momentum up and keeps us moving, inching forward, a little at a time.

Sisyphus could have used a team to spell him and more importantly Sisyphus really needed to develop an understanding and a sense of reality about his life goals.  He needed to accept the fact the rock wasn’t going to stay at the top.  

Marty and her team had to understand that in our journey of recovery we weren’t going to have a mountain top apex kind of experience.  You have to learn, through experience, what is possible and getting the rock to the top ain’t happening for us.

I used to think not reaching for the top was settling; now I understand it is reality, now I see it as acceptance.  It’s like I know I will never be tall, dark and handsome, I’m just not ever going to be taller or darker.  I just have to accept reality and settle for handsome.

So like Sisyphus should have, we have found support and we have pushed the rock as far up the mountain as we can.  Today, we, Marty, me, our team, we are holding the rock in static mode part of the way up the mountain.  

Marty and I have not given up on small improvements.  I know we can still push the rock up the hill a bit further and with our team, by adding new members to our happy little group we sometimes take a deep breath, put our collective shoulders to the boulder, dig our Asics into the scrabble rock and together push as hard as we can making sure we don’t let the rock slip and roll backwards.

We do it together, as a team because it lightens the load on all of us, particularly Marty and me.  We add new people to help us push from time to time and always keep more people holding the rock than needed so someone can occasionally take a pee break.  We do it together because  community makes you stronger.

Poor Sisyphus, he really thought too highly of his own solo capabilities.  He really needed some friends and maybe Medicare.

Friday, April 4, 2014

Nine Years Ago

I almost missed it.  Maybe that’s a good thing, maybe that’s a sign of acceptance.  It’s what happens when you move on; it’s what happens when you take down a calendar (

It’s been nine years, it was nine years two days ago, it was nine years ago since she sat holding her head, since she sat holding her head saying the exact words, “This is the worst headache I’ve ever had.”

It’s been nine years since that way too young red headed emergency room doctor pulled the ER curtain back and apologized as he said Marty was bleeding in her brain and I sat there not understanding and just thinking, “I don’t care, just fix her.”

It’s been nine years since I didn’t understand the implications, since I didn’t know the road to recovery, since I didn’t foresee the pain and loss Marty would have to endure. 

It’s been nine years since modern medicine and an amazing surgical team saved Marty’s life and gave us these nine more years.

Nine years ago I sat in the waiting room in Parkland Hospital with my children and their significant others and I couldn’t understand the real life implications of the ruptured aneurysm.  I know not knowing the future helped all of us cope that night.  

Nine years ago I cried, I sobbed, as they told me Marty had survived surgery but they had to leave part of her skull out.  That was the moment I cried for joy and fear because hearing those words finally helped me understand how close death had been, how close death still was.

In those nine years we have grown, we have grown into our new normal, maybe we have even grown into acceptance of our current life.  Some days I see it, some days it seems normal, it seems okay, other days, not so much.

In those nine years we have seen numerous doctors, Marty has endured several surgeries and too many invasive infringing medical procedures to count.  In those nine years she has been sick and we (I) have matured in how we handle the trips to the hospitals, again, too many to list.
In those nine years we have more than survived.

In those nine years we have met countless loving people who have reached out to Marty and to me.  We have grown closer to our entire family as they banded together to support Marty and me.  We have seen our children take loving care giving roles for their mother, we have see a family grow stronger in adversity.

In those nine years we have seen a daughter marry and our children procreate and give us grandchildren.  We have buried a mother; we have seen friends and our own family struggle with sorrow, death, illness and heart break.  We have seen life.

We have found remarkable women who have taken Marty into their heart and cared for her everyday as if she was their own.  The disease is catastrophic but we are all better for knowing Marty’s caregivers and the love they show to us and to their own families.

Nine years ago yesterday I woke from a few hours sleep to go find Marty in intensive care recovery at Parkland Hospital in Dallas.  She was lying on her back, half of her head shaved with a huge scar and indention on the front left side of her head.  The right side still had hair, matted with her blood from the surgery.  

She was full of tubes and lines and was surrounded by all manner of electronics beeping and flashing showing she was still with us.

Nine years ago I had no idea what our life would be like for those next few days, weeks and the years.  I knew Marty had survived, I knew we would fight for normalcy; I knew there was an awful lot I needed to know.

In nine years Marty and I have both changed, I hope we have grown, I hope we have found some measure of contentment with our lot in life today.  

Maybe almost forgetting is a good sign; maybe we are almost at normal.