Focal point

Truth can be very harsh.   Reality can be daunting.   Caregiving long-term brings these harsh, daunting truths to life whether you want to see them or not.

I have been a "muscle through" kind of person, a never-give-up kind of person, the glass-is-half-full kind of person, there is always a plan for the plan for the plan that might fail.  Backups for the backups, as my son talks about in the computer world.  

As I mentioned in my last post, this valley where we have been residing in the last year has been overcast, dark, and very dim.  The days pass by in a filter of hazy, structured darkness or fog; almost a negative smogginess.  It's hard to focus on anything else but trying to see clearly the next thing that crosses my path.

I know my role in this valley time:  to give loving care on any level needed, render aid and assistance at all times, think for, act for, protect, respond, adjust, be flexible, be proactive, advocate, remember everything...and the list goes on.  I'm never off "the clock."

Day after day -- the role never changes and that is where the weariness sets in and sucks the positivity and joy out of me.  Everything, every decision and action is filtered through the lens of what is best for the person dying.  One easily loses their own joy, zest for living, and life, as the memory of what life was like before becomes lost in the fog of what is and is to come.

Friends get tired of hearing of the darkness....and how small the world around me has become.  It almost seems like the mountains are moving closer together on some days:  and the valley gets narrower and narrower.  Life for others keeps moving forward....and here in the valley of the shadow of death -- time seems to slow down.  Every day is a "Groundhog Day" of taking vitals, talking with medical professionals, scheduling appointments, driving to appointments, trying to figure out if there is anything left in their magic bags of medicine to help.

A harsh reality exists when the magic bag of tricks is empty or doesn't exist anymore.

As a wife, I am torn inside my mind and heart with what I see:  the daily, excruciatingly slow, impending decline.  Life has changed for both of us.  Gone is the person that I married.  The disease robs me of that person.  He looks at me, and I am the same -- but different -- if he remembers anything about who I really am.  I look at him, and he is not the same in any way, except the color of his eyes.  

The knowledge there is nothing left to "fix" is the daily reality and what life is right now...

Each day reveals the struggle is that disease is winning....not just in him, but in me too.

I can't let it take me too.

Finding the strength to fight for my own survival when I'm already depleted is challenging, but I must fight because I know the length of the valley won't last forever.  Life will continue.  So searching for a glimmer of light each day is paramount, or I could get lost in the valley of the shadow.  

And that's what I fear the most.

The Valley

 Life doesn't always include mountain-top experiences for long.  Sometimes it seems like the valley is where you are meant to be.  

I literally have lived in a valley for the past ten years.  It's one of the most beautiful places I have lived in my life. 

I have learned that the valley can be a dry place, where the storms are buffeted by the mountains on each side and the rain doesn't reach the valley.  You can watch the storms on the other side of the mountains.

The valley can be like a long wind tunnel if the wind is coming from the right direction.

The valley can also be a fertile ground, where things grow in the low lands, green and lush, if there is a stream running through.

All my life I have heard the phrase "the valley of the shadow of death."  Being a younger version of myself with less life experiences, that phrase didn't have much impact on me.  I didn't even want to explore what that phrase might mean or look like in my life.  Who wants to think about shadows and death?

Being an older version of myself, well, now life is forcing me to explore this "valley of the shadow of death" even if I don't have my backpack, hiking shoes, and water bottle packed and ready for the journey.

The shadow of death.

As a kid, we would play with our shadows -- the afternoon sun casting our shadows on the ground; short shadows, long shadows, making shadow puppets or pretending to be the tallest when you are the shortest.  Fun shadow games.    

I've not been one to be afraid of shadows.  I'm not one to be afraid of the shadow of death, but I, myself, have not been considered to be actively dying -- other than understanding the reality that we all will leave this physical life one day.

What no one tells you is that living in this shadow of death with a loved one who has a chronic illness that is not able to be healed....is.... well, exhausting.  It takes over every thought, decision, plan, emotion.  It can numb the joy, happiness, or the good feelings in life, though it makes you grateful for those moments, however brief they are.  The reality that that shadow that reappears as soon as the sun rises again hits your awareness and wreaks havoc on your senses.

This shadow valley is one that feels impossible to escape even for a few moments, as if you were trying to climb a rocky mountain with bare feet.  Honestly, sleep is the only true escape.

It's easy to feel alone in this shadow.  It's not like the fun times of shadow puppets.  It's not like you say to your friends, Hey -- grab your backpack and let's go hiking in this dark shadow valley where there is no light at the end of the tunnel for a day.  Yeah, we might go spelunking for fun in caves, but we usually do not live in the depths of the cave.   And unless you have been in death's shadow valley yourself, it's hard to understand what it might feel like and be for another person.

It takes light to make shadows, right?  Sunlight, lamplight, whatever kind of light.  You cannot have a shadow without light.

I guess what is what I'm trying to do is live in the shadows that are covering the valley, but focus on the light as the storm is not ripping through the valley leaving rainbows behind, but hanging here.  Honestly, this is hard.  It's one of the hardest things I have done in my life.