A Legacy In Spite of it All

I’ve whined about this before so let’s continue the whine.  I wish that my grandchildren were able to really get to know Marty, the way Marty was, the energy that was Marty before the strokes.  I wish it for me, I wish it for them, I wish it for our kids, I wish it for Marty.

Alas, wishes like these don’t really come true, sort of.

Our daughter Erin posted the following conversation with her daughter Lily on her face book page:

Me: What did you have for snack today?

Lily: The Snack Fairy brought us red and yellow goldfish. I know the Snack Fairy isn’t real. It’s really Miss Morton. Some kids think she is real though…

Me: Well that’s cool. They can believe whatever they want and I bet it makes them super happy to believe that. So…don’t argue with them about it.

Lily: No…

Me: Why not? Are they hurting anyone if they believe in the Snack Fairy?

Lily: No…I just don’t like it.

Me: Hmmm… Remember how we believe in Jesus and God?

Lily: Yes…they are REALLY real.

Me: Well…yes, but some people don’t believe they are…Some people believe in something else completely different than us. Are we hurting anyone else by believing in God and Jesus?

Lily: No!

Me: Do we have to change what we believe just because someone else doesn’t feel the same way?

Lily: No…

Me: Exactly. It’s not a matter of being right or wrong. It’s about respecting other people. So…as long as we aren’t hurting anyone with what we believe, we can believe whatever we want and other people can too! And guess what?! We can all still be friends. So….if tomorrow a friend at school says, “I know the Snack Fairy is REAL…” You can say, “Hey that’s super cool!” And leave it at that…Got it kid?

Lily: Got it Mom…

This interaction is so Erin, it is so Marty.  In a simple conversation tolerance, love, acceptance, understanding is taught and modeled in a way Lily will always remember.

I see it a lot, I see it in both of our children, I see the mother Marty in the mother Erin, I see the mother Marty in the father Matt, our son, I see so much of Marty in our children and it makes my heart smile.

I too often have worried, will our kids remember the lessons and the life of the real Marty, will their children ever know the fun that was Marty, the crazy that was Marty, the passion, the love, the fire that was Marty. 

The fact is the children of our children will never get to see and feel what was.  I worry, I mourn.

And then I see our kids with their kids, I see Marty; I see her wit and wisdom and passion living through Matt and Erin.

I suspect it’s what all of us want.  We want our good stuff to live on, we want the good stuff that made us who we are carried on by our off spring, it’s positively instinctual.  It makes me feel like a real father, I know it makes Marty feel like a human being again, to see our DNA, our life carried on in the people we raised.

I am in love with and proud of my wife.  I am amazed at who she is today, I am forever grateful to the woman she was and I often long for the person she was before life changed.  That memory and love for Marty, at times, makes me sad for the losses we have all endured and that sadness is magnified at those times when I think our grandchildren will never know what was lost.

And then I watch our children and realize how they carry their mother with them, always. 

That sadness never goes away, that sadness is mollified when I see our children carrying Marty with them.

Real Milestones

The anniversaries of the strokes are big milestones, but the date where the rubber really hit the road , June 2006, was when we made it home after the 2^nd stroke.  That was when our new life started.

Our old life died on the days the strokes occurred.  The old ways of doing things, our old relationship, our old marriage, our old simplistic and naive view of life all died on the stroke dates.  The new life, the new normal started when we came home that June.

As we rode home, a home Marty hadn’t seen in six months, our new life smacked me in the head when the agency I had contracted with to provide care giving service called to say their care giver would not be able to make it that night.  

I was already walking a very fine line between sanity and total panic induced insanity and I went ballistic as I drove the car home with Marty beside me.  I’m sure my reaction scared Marty; the thought of no professional care giver certainly scared me.  It was my introduction to our new world; it was Nurses’ Unlimited’s introduction to the maniac, Marty’s Husband.  They sent a supervisor to help us make it through the night.

We hadn’t been home two weeks when Marty went back in the hospital in July to treat an upper respiratory infection.  We returned home after four days and then went back to the hospital with another infection about six weeks later.  I was on the edge of believing I could never, ever do what lay in front of us.  How would I ever be able to manage the disability, the meds, the procedures, the appointments, the need for constant help, the infections and all of the other issues associated with these strokes?

I was emotionally exhausted, I was anxious all of the time, I almost foundered from worry, mostly I had this profound fear I couldn’t do what needed to be done.  Marty and I were home but it was a home I no longer recognized, it was a home that provided very little comfort for me and I worried it didn’t provide the safety and security Marty needed.

While the hospitals and the sub acute care centers and the rehabs were difficult they did offer some sense of security, some sense that we could rely on someone else’s judgment…….someone else’s judgment, not mine alone.  Being home meant I had to rely on my own judgment.  I didn’t trust myself.

Marty didn’t have much of a choice, she had to trust me, she had to assume my judgment about her health, about her care, about her very life would pass muster.  Trust me when I say it was a sea change for her too.  

Marty accepted.  Marty decided, whether by choice or not, she decided she would look to me not to fail her.  Somehow she didn’t doubt, she just assumed I could do it, she assumed we would make the transition to our new life, together.  

 

Ultimately her confidence in me made the difference, she believed in me when I didn’t believe, she believed we would find our path.   She taught me that we can do what is necessary; she showed me we can rise up and do those things we once thought beyond us.  Her faith, her belief, her tenacity, her refusal to accept less made me better and we survived those first tumultuous incredibly frightening weeks.

I still doubt, I still fret, I still feel anxious, I still worry about her and watch her like a nervous hunting dog, always waiting, almost sniffing the air for prey, always waiting to stiffen and point.  A yawn from her, a stretch, a cough, a sneeze, a sleepy reply, a confused look still takes me back to those very difficult days, to the June we came back and buried an old life and started anew.  

I suspect that will always be.

I hate the strokes, the coming home days still cause me to breathe too rapid and too shallow.  I am forever grateful for Marty and her faith, her faith in God, her faith in me, her faith that we can adapt.  Her belief changed me.

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.

The Pain of Awareness

She has many of the needs of a child, yet she is not a child at all.

The strokes that scarred her brain stole her independence and her ability to care for herself.  They robbed her of the ability to do the simplest things.

I know she doesn’t feel like a child, she knows she is not a child, she doesn’t want to be a child, but she knows she is as vulnerable as a child.

All of this is the anti-Marty.  Her new normal, her dependence on others, this child-like vulnerability is the antithesis of what she was, the way she saw herself.  She hated feeling dependent, she hated being vulnerable, she craved control.

Marty is a dependent, she is dependent on others for virtually all her care, she is dependent on me to care for her, me, someone she trusts 99%, not 100%.  

I asked one time if she trusted me completely, she said she trusted me 99% worth.  I then took the chance and asked her if she trusted me 99% of the time before the strokes and she paused, thought and told me, “No, it was more like 95%.”

Hey, it’s an improvement.

Marty, before the strokes, hated feeling, being vulnerable; it made her feel weak, out of control.  She chafed against the idea of needing help, it made her stiffen, it made her angry.  She was one of those you did not want to cross when she was backed into a corner or felt a little incapable, she could bite.

Marty, after the strokes, accepts vulnerability, she understands her needs, she understands that the scars on her brain limit what she is capable of doing.  None of that means she truly accepts it, none of that means that the part of her personality, the part of her ego that took pride in independence is gone, it may be scarred, but it is present.  She is aware of her frailties and she does not like them.

I watch Marty as she is necessarily rolled from side to side to be dressed.  More often than not she closes her eyes; she closes her mind to what she perceives as the indignity of what is happening to her.  It doesn’t matter how careful we are to preserve her dignity and privacy, what is happening is contrary to her core nature, contrary to the core of the woman I met almost 40 years ago and she knows it, she is fully aware of her loss.

When I met Marty she was smart, funny, independent and not vulnerable in the least.  It took years for me figure out and understand her soft spots, it took years for her to begin to trust me and it wasn’t trust 99% of the time.  She wanted control, she wanted to do it her way, she wanted to do things the best way and that was her way.

She’s not that much different today, she just understands she has to relinquish control, she has to accept vulnerability, she has to live with others doing things for her she would never have allowed anyone to do, even me, maybe especially me.

Its part of the crime of stroke, the scars rob you of your physical abilities, they take memories, they take mental skills, they take fine motor skills, they steal muscle control.  But with Marty, they have left her awareness of the past and the present.  And while the recognition of that loss is dreadfully painful for her and for those who love her, I am so grateful she is aware.

It feels wrong, but I find I’m grateful of that awareness, I’m grateful she is aware of the people who know love and value her.  I’m grateful she knows and understands how much we are willing to do to care for her.  In many ways we are lucky because she knows the sacrifice, she knows the effort; she knows what is happening not to her, but for her.  

She understood life and love and pain before the strokes.  

I know she recognizes what she sees most days, she understands.

It’s the pain of loving; it’s the pain of being loved.