Three Massively Brilliant Thoughts

It’s always a little dangerous to look back, but when I do, when I go back to the days after we first came home from Marty’s second stroke I am aghast at how stupid I was.  I knew nothing about caring for the needs of someone like Marty.  

The good thing was I knew how stupid I was.

The next good thing, I learned.  I read, I watched, I talked, I learned from my mistakes.  And there were mistakes and there was a lot of anxiety and sweat.

Care giving is not my native skill.  Care giving is not something I thought I could do.  I told one of Marty’s physical therapists about my lack of skill and she said, “Don’t worry, you will figure it out.”  She was right.  It takes time and you never stop evolving, but you do figure out some stuff.

As a virgin care giver I was constantly worried about when to call the doctor.  Before Marty got sick I had never worried about when to call the doctor because Marty always knew when to call the doctor, now I was tasked with that responsibility for someone who could not self-diagnose or even say, “I feel shitty”.  I didn’t want to overlook something real and I didn’t want to be one of those guys that are constantly bugging the doctor’s office with nonsense.  I didn’t know how to do any of that.

My doctor gave me a great prescription, “Don’t worry about calling too much, just follow your instinct, listen to your gut”.  He was right; there was no one who knew Marty better.  Even if I was a novice and trying to understand the new Marty, I knew her the best and was with her the most.  That’s what I did, I followed my instinct and it turns out my instincts have been pretty good.

Follow your instincts, listen to the little voice in your head (just don’t talk to it out loud, that makes you sound nuts).

Not long after we got home after the first stroke Marty got sick again.  We were home in mid-June, at the ER at the first of July.  I was overwhelmed; I just couldn’t see how I was ever going to live like this.  I didn’t care that others had done it; I knew I couldn’t handle the pressure, I knew it was only a matter of days before we were back in the hospital again and that every cough, sneeze, or stretch was a harbinger of the next major illness.

My friend Judy, an old friend, sent me a note quoting her doctor.  She wrote that her doctor once told her, “just because you hear hoof beats doesn’t mean its zebras.”  As humans we too often have a tendency to look to the worst case or make something into something it isn’t.  Not every cough is pneumonia, not ever stretch is a seizure, not every grimace is another stroke.  

There’s a fine line between maximizing and ignoring, just remember there aren’t that many zebras in the world.  Don’t immediately assume the worst.

The last piece of brilliant advice I have is live it day to day, procedure to procedure, illness to illness. It’s so easy to say, it’s so hard to do.  I struggled too often and still do with what I would call “burying Marty”.  I must have planned Marty’s funeral a hundred times.  When my gut told me she was sick, my gut, too often said she was dying.  It is brutal and futile to live the death of someone you love every day.  

It kept from participating in life because I might be planning a funeral.  The truth is, I was planning a funeral and it was crazy making.  The plain and simple truth was and is Marty might out live me, I just don’t know and to pretend I do is crazy, isolating and a little dangerous.

When I finally made the transition to taking things one at a time my life, our life, got better.  I became more engaged with the outside world and I got Marty more engaged in everything.  We didn’t hide from the world, we started trying to meet life on the new terms we had.  It wasn’t great, it was hard, it is still hard, but so very much better.  I hate funerals.

Live your life, live your life day to day, one issue at a time, it’s not quite as overwhelming and you still get to the end, and the ride is much more enjoyable.

I’m not going to self-righteously say I am successful at doing these three things.  I’m not; I struggle with all of them.  

But, I do trust myself and my instincts about Marty and we have a doctor who asks, “What is your gut telling you.”  I consistently remind myself of my friend’s message, it’s probably not as bad as it seems and I work really hard at not borrowing trouble from the future and living our life on a day to day basis.  

These things make the terrible and deeply rewarding job of care giving and learning from Marty better.  These things make me better for Marty and that’s really a big deal to me.

Shaking the Core

I’m a big talker.  I’m full of wonderful counsel and advice for other people and I can wax on eloquently about the things I have learned over the last few years and how I have successfully incorporated those brilliant discoveries into my own life.  

Over the last few years with Marty’s illness I have tried to develop a simple mantra for dealing with huge life and health issues:  take it all day by day and issue by issue, don’t borrow trouble and never ever climb the ladder of inference making something into a catastrophe.  

I had done so well.  I had intentionally moved from thinking too far ahead to simply living in the moment.  I had made the mental shift from worrying about Marty and her health and her death on a daily basis to rarely ever worrying about what I couldn’t control.   I was rock solid and prepared for the vagaries of catastrophic illness.  

And then we started the hospital carousel again.  I realized I had done a world class job of kidding myself.  

My fitness muse, Gretchen (the perfect name for a fitness muse), from time to time, for her amusement and my good health, has me stand on two inflatable discs.  They are about four inches high, about the size of a really large plate and only partially full of air.  They aren’t stabile for a big guy.  She then hands me a 20 pound ball and I’m supposed to sling it from side to side or crouch down and touch the floor with the ball 20 times all while balanced on air filled Frisbees.   Theoretically the exercise helps with balance and increases core strength.  

I can do this exercise, unless I lose focus or if someone simple pokes me, then I fall off the inflatable discs, Gretchen laughs and I start over again.  It’s requires focus, balance and strength.  A gentle push and I’m off.

I really thought my emotional core, my psyche, was prepared for our somewhat fluid future.  I didn’t really understand how little it would take to push me off of my core principle of not burying Marty every day.  

Marty’s daily fatigue and recent multiple hospital stays have pushed me off my core.  It feels like I am right back where we were six years ago, worrying each and every day about life and death and focusing on nothing but the end of Marty’s life.

I go to sleep at night worrying about what is going on with her.  I wake and before the morning fog in my brain has lifted the worry starts to wrap around my mind.  I find myself wondering what’s happening, always wondering in the back of my mind if this is the start of the final decline. 

It feels like going backwards.  Hell, it is going backwards.

This type of thinking paralyzes, this type of thinking breeds anxiety, this type of thinking creates dangerous and magical thinking.

I find it harder to concentrate, I find it harder to plan, I find it harder to walk out of the door and participate in life with or without Marty.

My daughter-in-law whom we love sent out an e-mail the other day to start planning some birthday celebrations over the next couple of months.  She is an organizer and I love that in her, it helps me and my extended family immensely, but all I could think of when I got the e-mail was, “I don’t know”, and then nothing.  I couldn’t engage because I couldn’t get past the last couple of months of illness, because I couldn’t erase the overall feeling of dread that has me surrounded.

The feelings surprised me.  I thought I had this figured out, I thought I had my core set and steady and ready, I felt like I was standing on the air filled discs with a solid athletic stance ready for any distraction.  Turned out all I needed was a little push, a little medical drama, to fall off and drop the ball.  

Hey, I’m still full of confident advice.  In Texas speak, I got me some knowledge and I’m ready, to quote Marty, to “Let me tell you how to do that”, or to put it another way, I can tell you how to do it, I thought I could do it, I just haven’t been tested in a while and it’s not that easy.

Maybe it’s just a new awakening, a new understanding of our life.  Maybe it’s just our life’s way of saying don’t get too comfortable, don’t think you got this shit figured out, because as soon as you do something happens to remind you how delicate life is.

Moving forward is the question, it’s always the question, how do you do it.  Clearly the whole one day at a time thing has merit, for us, it really is a key part of living “normally”.  

I have to find a way to get back there, but more important, I have to understand that our life will never be without fear, without anxiety, it is a life, that at times, will be full of both.  It’s also a life that is full of love, full of companionship, full of many amazing moments.  

The key, the core, is to see those moments and embrace them.

Enduring

It’s a contest, a test, a test of endurance.

Chronic illness is the supreme test of what a human can stand, what they can endure and still live a satisfactory life.  There is nothing fancy about it, nothing heroic about it; it’s persevering through the awful, hanging in through the grim, being dogged in living, and ultimately enduring what life brings.

Years ago one of our good friends father contracted cancer.  Our friend, as he watched his father endure chemotherapy,  said that it was a contest between which would kill him sooner, the disease or the cure.  It was a matter of enduring, out lasting the healing poison.

I watch Marty, I see how she quietly endures with dignity all of the pain and the indignities that come as a result of the strokes.  I watch and see how she fights against the disease and the disability, I see how much she wants to be something else, I see her resigned to endure.

I see Marty, I see Marty who once thrived and reveled in autonomy, independence and privacy.  I see Marty, I see Marty who was controlling, who was intellectually curious, who strived to know more and do more.  I see her tirelessly endure the loss of those things she so loved about herself.  Losing the best part of ourselves is always the worst.

Marty endures.  She endures the invasion of her privacy, she endures the fear of losing herself, she endures the pain in her head and in her hand, she endures the poking, prodding, pushing, rolling and doctoring, she simply, quietly, resolutely endures.  

She puts up with, she endures, my incessant nagging to cough, to sit straight, to swallow, to look at this, to look at that, to respond.  She endures me, my impatience, my micro managing, my controlling nature, my short comings.  She endures her own self-consciousness and the eyes of those outside our sphere; she endures her self-doubt, her fear and her sorrow.  

We both endure the restrictions, the monotony punctuated with the occasional crises.  We both endure the loss of what once was, what might have been, what should have been.  We endure, we endure together.

You don’t survive; you don’t endure because that’s what you choose.  You survive because there are no other choices.  Some things, some events leave you no other choice but to put your head down and take one more step.  That’s the way it is at our house, there are no other choices, we are not capable of quitting, so enduring is the only other option.

I know the disease or caring for those with the illness can eventually wear you down, I know there are times Marty feels she cannot continue this marathon.  I know when one more thing breaks or one more infection comes, or one more rash appears both of us want to throw our hands in the air and scream “I’m crying Uncle, I’m not running the race anymore; I quit.”

Quitting, giving up, crying uncle, it’s not our nature, it’s not human nature, it’s not what we as humans do.  We endure; we take another step in a long line of steps.

Enduring, hanging in there, can, slowly, inexorably, over time, grind on you to the point you simply want the point of pain to go away, however it can.  The constancy, the every day, every week always there nature of a chronic illness can quietly invade and conquer any resolve you might have and start to infect you like a disease.  The repetition of the pain and angst can wear you down and make you someone you don’t recognize and don’t want to be.  

You have to resort to the whole concept of eating the elephant one bite at a time.  All you can do is one more hour, then one more day.  Endurance is not about seeing the end of the race; it’s about taking the next step, running to the next curve, topping the next hill.  

I am amazed by Marty, I am amazed by her capacity to live and smile and endure, every day.  Her life is not what she planned, she would not have wanted to be in an endurance contest…..but she is and she endures with grace.