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. 

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.

DNR

The world just keeps spinning, even when you can’t spin with it. 

 

As I stepped out of the emergency room to breathe in some hot night air I saw a couple of cars drive by. I thought, “I wonder if they know how lucky they are, I wonder if their life is as simple as it seems?”

My head wasn’t in the mundane which is really the meaty part of living.   All of my focus, all of my energy was on the little monitor above Marty’s head, the monitor that shows her oxygen levels, the monitor that shows her beating heart, the monitor that shows her blood pressure way too low.  All of my focus was on the next blood pressure reading.

That was Friday; we came home from the hospital Monday.  Marty had another infection, an infection that came suddenly, without precursor, an infection that weakened her and pushed her compromised system too hard.   

Marty is feeling better and all signs point to recovery from this latest event.  Guess what, I’m not really ready to dial down the hyper vigilant mode.  

That Thursday Marty had just shown signs of getting back to normal for her most recent UTI.  On Friday things changed, she had been tired all day.  She seemed to feel good when she woke up that morning for breakfast but after that, pure lethargy.  She was tired, sleepy and complained about a bad headache.  It was late in the afternoon that her blood pressure started to drop.

She and I ate supper alone, together, as I watched her every move and quizzed her to get some sense of what was happening and if what was happening was bad enough to ring the alarms.   We watched the news as we ate and watched as the world kept spinning.

I had already been on-line and made a reservation at the emergency room we frequent, “just in case”.  I told Marty I would check her blood pressure one more time after she drank more fluids and ate some supper.  We ate, she drank, I did, and it was too low and the decision was easy, we piled into our van and drove to the ER with me looking in the rearview mirror at Marty too much.

We got in quickly and were in the system immediately, her blood pressure still trending down.  I have to say it never felt fatal; it never felt like Marty was leaving, but maybe I wasn’t being realistic. 

Marty’s blood pressure was as low as I had seen it and her persistent complaints of a really bad headache brought back the nightmares of the ruptured aneurysm.  It had been eight years but here we were in the same ER, it felt like history repeating a very frightening memory.

Tests were done, blood was drawn and urine was procured.  A chest x-ray was clear and best of all a cat scan of her brain was clear save the damage from the previous strokes.  Her blood pressure was awful but she wasn’t bleeding in her brain again, that left a tenuous sense of relief.

The blood tests did reveal an infection and fluids were administered to prop up the blood pressure and dilaudid was given to help with the headache.  Marty slept.

While the world was turning outside of Providence ER, while those wacky Kardashians were setting social standards, while my daughter-in-law whom I love was driving home from Austin, I sat with Marty’s doctor, who is also her friend,  in the ER talking, answering questions, answering THE question.

I hate the question.  I hate the thought of the question.  I think I know our answer to the question, the answer Marty and I have talked about before her strokes and since the strokes.  I think I know our answer.

Great and Wise wanted to know what we wanted to do if Marty’s heart stopped.  It wasn’t a capricious question; it was a serious question from a loving man in a serious situation.  Marty was weak from some unknown infection and her blood pressure was precipitously low.  We were up against it and it wasn’t a theory. 

I gave the answer, I hate the answer.  I started to doubt my answer as it came from my mouth.  “We let her go, “I said quietly.

As the world continued to turn, as people necessarily went about their lives shopping, cooking, kissing, holding each other we were in an emergency room in Waco Texas talking about end of life decisions, this can’t be our reality.

For me, it’s an easy, clinical decision…..if it is someone else we are talking about or we are just sitting around talking and theorizing.  But it’s not theory, it’s not someone else, we were talking about Marty and we were confronting reality once again.  

When they put the purple wristband with the initials DNR on your loved one it becomes a made decision.  Doubt, recrimination, self-criticism was and is almost overwhelming.  How can you say, “Just let her go….”

I have to be reminded that Marty is not afraid of dying, that her words, “It’s just another way of being” are true.  I have to remind myself that it is not about me, that it is about how Marty has always wanted to live her life.

It is not a onetime decision, it is not a spur of the moment decision, it is an evolving decision that stems from 40 years of talking with Marty.  It is a decision I know she would agree with, it is a decision that requires more courage and faith than I may have the next time.  

I don’t really care to think about the next time, I only know that the purple wristband symbolizes my worst fears and my hope that I really do know what is the best path. 

It’s really all about the hope.

Is the Turtle Dead?

Marty and I are miles from where we started.  Her progress, her improvement from the early days of the strokes is really amazing given our starting point.  

When is enough, enough?  When have things progressed as far as they can go, when do you arrive at “as good as it gets”?  How do you know when it is time to accept the losses, accept things for what they are?   It’s a question that has been banging around in my head since I had a brief conversation with my trainer about a dead turtle.

 

I have been working with a personal trainer now for a couple of years, you would think, as hard as I work, I would be svelte, but only the morbidly obese would call me svelte.  Gretchen, the trainer, has pushed me, prodded me, goaded me, listened to me, talked to me and been my fitness muse for the last two years.

Gretchen is an absolutely fascinating woman.  She’s a very private woman and you need a can opener to pry her open to find some of the real Gretchen. I love the challenge of plumbing the depths of private people and she is a genuinely private interesting woman who has lived an interesting life and is a paragon of fitness and nutritional virtue. 

Gretchen, bless her black heart, has me doing all kinds of things I would not have thought I could still do at my advanced age and suspect height to weight ratio.  She is sneaky about it, she just simply says, “Here, put these things under your feet, put your hands on the floor and drag your tookus across the floor like a young man.”  

I say, “Okay, I can do that,” thinking this should be easy, it’s not.

While you are sweating and depriving your brain of oxygen Gretchen chats you up to help you forget the pain and the general lunacy in the physical act of jumping on and over a ½ ball thing.  The chatting is pure misdirection to take your mind off the pain.

We were talking about pets the other day.  She has three dogs, two cats, no fish and no birds because apparently the birds get eaten.  She does have a turtle.  She used to have two turtles that her sister gave to her youngest daughter.  She told me one of the turtles died and she had to bury the turtle one weekend when her daughter was gone.  

The real point to all of this was the simple question, “How do you know when your turtle is dead?”  When do you accept what is?

I mean think about, what does a turtle do when it’s alive that it doesn’t do when it’s dead?  Can you check to see if their breathing, check a pulse; look at their pupils, anything, anyone?  

With Marty (I know, it’s a leap), it’s not about a dead turtle but have we reached the best it’s going to be?  I would really like to know if we are at the apex of her recovery and if we, mostly me, need to understand and accept that reality.   I want to know if this is where her cognitive abilities peak, if this is where my understanding of her understanding is as good as it will ever be.  The real question is when do I stop pushing her and when do I cap my own expectations of her and me?  

There are days I get frustrated, there are days I get mad at the slow, turtle like pace of change.  At times, because I am right up close in the middle of everything, it’s hard to see if there is any change, if there is any improvement.  It drives me a little crazy.  I don’t know if we have leveled off, I don’t know if cognitively Marty will improve anymore, I don’t know if we have peaked and this is as good as it will get.  I know we have come a long, long way.  I know where we are today is markedly better than where we were five years ago, I just want to know if five years from now, as we look back, will we look back and see even more progress.  What is real, what is unrealistic optimism?  

For me, it helps me to tamp down unrealistic expectations if I know and understand what is real, what is possible.  It’s key for a reasonable perspective.  Preconceived notions of what we want, of what we would like to be, can be incredibly disappointing and frustrating.  I get angry when my happy expectations are slapped with the cold reality of this disease.  

They tell you that after about six months of recovery from stroke or other traumatic brain injury you are what you are, you have reached your peak recovery.  I reject that notion. It’s been six years since Marty’s second stroke, she still works at recovery every day, she still finds new versions of old skills.  The brain continues to find new paths, new ways to do things.

The question is when is it enough, when will we be at the best it can be, when do we bury the turtle? 

Gretchen said she just watched the turtle for a couple of days; it didn’t move or look alive so it was dead to her.  A lesson for living in her house, you had better be moving or you get buried in the backyard.

I don’t want to think we are done.  I don’t want to think Marty can’t continue to get better.  Marty has always thought she would continue to get better, on this she has never wavered. One of the mantras of recovery is, “I’m better today than I was yesterday, I will be better tomorrow than I am today.”  Believing this, Marty has never stopped trying, she has never simply accepted life as is but has always looked for life as it might be.  Maybe that’s the answer to the question.  

It would be better if the damn turtle would just turn belly up, but that would be too easy.