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 Surround

Saturday, October 21, 2017

3:42 PM

Today I witnessed a man surrounded by love.  There were loved ones at his head, by his side, and at his feet.  Within the warmth of those around him, he slipped from this life into the next.  There was no anger around him.  No guilt for words not said. There were no words of hurt or misunderstandings that hadn't been resolved.  There were warm memories.  There was love.  There was so much love you could feel it -- almost palpate it with your hands.  You could certainly see it in the eyes of those in The Surround.

Live life.  Live life so that you have people who surround you while you are full of life.  Live life so that there are no regrets, no words left unsaid, no anger or hurt or misunderstandings left unresolved.  Now is the time for that type of healing.  Now is the time to seize each moment with those in your tribe who will surround you some day when your time in this life is at its end.   Invite into your circle those people who will love you, hold you, challenge you, laugh with you, be with you, sing with you, walk with you, sit with you, and dance with you even though you might not dance well.    Embrace your Surround while you are able.  Be kind and gracious and loving.  Agree to disagree and love them anyway.  Get together while your dishes are undone, and your floors are unswept, and your projects are undone, and there is only PB&J in the cupboard. 

Love them.

Embrace them.

Look them in the eye and tell them how much you care and admire them and appreciate them for walking this path with you called Life.

While you have time.  While you have breath.  While you can open your eyes on this beautiful earth.  LOVE.

-in memoriam of my friend, Jim D. Pulliam

No matter what

I've not written for a while.  Sometimes the scope of the path doesn't allow for times of quiet reflection.  Sometimes the rocky terrain of the journey forces you to pay attention to the path at hand and reflection is forced to wait.  My journey has been like that for me in the past few months.  When that happens, however, I long for times to sit and process.  My head is full of stories, and my heart is full of emotion.  The two don't always jive, honestly, my heart and my head.  It's on days like this, where I just HAVE to process, that I find a place to sit on the path no matter what is going on around me, and no matter where I am on the path.

I choose to sit and think and feel.

At times it is overwhelming all that comes to the surface.  It is almost as if I have my feelings chart in front of me, and the assignment is to circle what I am feeling at this moment.  As I contemplate the chart, I end up circling almost every feeling in every column!

So I sit and think and feel and try to sort those feelings into truths, and drown out the stories that my mind and heart tell me which aren't true.

Being honest with myself is a gift I give to myself -- No matter what.

I can see clearly now....

Today I had my eyes dilated.  

One thing you probably don't know about me is that when I was a toddler I had an eye injury that almost took my sight in my right eye.  Every eye doctor who has looked in my eye since that time has said the same thing, "WOW!  Look at that!  What happened to you?  THAT'S AMAZING -- you are one lucky girl that you can even see anything out of that eye."  They go on and on as they look at the scars and pigment floating inside my eye and the jagged scar across the outer lens of my eye.  Today was no different.

You see, I have vision in both eyes -- not good vision, but I am able to see.  I am GRATEFUL for corrective lenses for without them my world would be one big blur.  When things are blurry and out of focus constantly you end up second guessing yourself, your judgment, your thoughts -- basically everything around you.  Your depth perception is non-existent -- field of vision -- peripheral vision -- nothing is clear.  Your world turns gray and dark as you try to feel your way around -- counting steps -- choosing the familiar.

Today as I stepped out of the ophthalmologist's office all I could think was WOW!  It's a bright, bright world out here! I had to head back into the building to find my sunglasses in my bag, put them on and then head out once again into the brightness of the day.  The thing is today is actually a very cloudy day.  No sunshine, no shadows -- just heavy cloud cover. Most people would say it's a gray overcast day -- yuck.  I might even have said that -- as I went into the office.  Coming out of the office, however, my mindset had completely changed.

Isn't that funny how a single event can change your perspective?  

Maybe you had three choices -- and now only two -- and what was less in your perspective just became more.  Maybe you were almost run over -- and your perspective on life shifted so that you are thankful for living one more day.  Maybe what used to be important -- just faded into the background as you are choosing to live in this moment -- not past moments.  

I know I have spoken a lot about perspective.  That's because mine is changing.  I hope you will bear with me while I share.

There is so much in one's life that can change in an instant.  We tend to gravitate towards those "events" in our lives:  the close calls; the missed calls; the opportunities not taken.  We focus on what could have been rather than what IS.  Today, I want to choose to be grateful for what IS.  Not only do I choose to be grateful for what IS --but WHO is.

I am grateful for those who choose to be present with me.  I am grateful for those who choose to show me that they love me and work to include me in their circle of influence.  I am grateful for those people who respond to my friendship, laugh with me, and spend time with me.  Being grateful for those around me helps keep my focus outward, but I am also learning to be grateful for me.  

Me.  

My thoughts, my feelings, my weirdness.  Me.

Some people would call that narcissism.  Some would call it selfishness.

Others call it self-love.  Positive self-esteem.  Positive regard for oneself.

See, I'm learning to regard myself as someone who counts.  Someone who has worth.  Someone who has value and who might not be like E.F. Hutton, but who might have a nugget here and there to share.  I am learning that there is nothing wrong with thinking such things or saying such things because I still know where I came from and who my Maker is.  Trust me -- learning positive self-talk is not an easy thing for me.  I struggle with self-love.  It's much easier to love others than myself.

I think I need to remember to look at myself through dilated pupils every day.  I need to remember those close calls, but not stop there.  I need to let them open a world of not only what IS, but WHO IS.

The VOID

These words crossed my FB feed one day from the Healing Hugs web page.  Loss.  It comes in all sizes and packages and isn't always about people.  Sometimes we lose things that represent memories in our journey -- those tangible symbols of  a time that was memorable:  good or bad.  Feelings of loss can arrive after realizing the loss of losing something that makes us feel good, like a favorite pair of shoes or jacket.  Feelings of loss happen when connection is lost between two people or pets.  It doesn’t matter what the type of relationship.  There is a void where the connection once was and it's hard to know what in the world to do with that empty space the void creates.

Truly, I don't think the reason for the loss matters.  There could be many different reasons for losing connection.   Temporary loss of connection could be as simple as losing cell phone connection in the middle of a conversation.  It could be the loss you feel when your child goes on a weekend trip or to summer camp; or if your partner is deployed and you know it's going to be a long season of multiple months away causes feelings that connection is lost.  Maybe you stay connected occasionally with friends or family and you haven't heard from them in weeks or months -- a longer period of time than usual -- and that creates a feeling of loss.  There are many other scenarios -- fill in one that comes to your mind that you have experienced.  A temporary loss can be devastating, but one thing differs from permanent loss -- there is the hope and knowledge  that the loss of connection will end.  Your child will come home from camp or the weekend away;  your partner will come home (hopefully safely) at the end of deployment; family members or you yourself will pick up the phone and text or call or write and connection resumes again sometimes even stronger than before.

Long-term loss feels different to me.  It has an underlying foundation of hopelessness.  In terms of long-term loss -- one can hold out hope for a season and sometimes the season is long -- months, years, decades and sometimes a lifetime.  There is hopelessness, but yet a mustard-grain seed of faith keeps some spark alive that things will change and connection will be restored.  This is a hard place to be.  Connection takes two entities and if one is unwilling or unable or the connection didn't mean as much to them as it did to you,  it might be easier for them to move on ahead and fill the space that you once occupied in their mind, their heart, their spirit than for you to do so.  This particular waiting room can be a painful place to reside.  Wondering during the season of un-connectedness can be excruciating.    "What-if land" can be filled with fear, suffering, loss, mourning, and even anger.  Feelings of not being enough are ever present on the surface.   Frustration, anger, and sadness can flow in and out of your emotions when certain memories are triggered and yet, if good memories come to mind, joy and sadness coexist in a way that befuddles the mind. 

Permanent loss is devastating in that there no longer is any hope.  There is no light of reconciliation or re-connection.  Only time can blunt the sharpness of the loss and the time frame is different for everyone depending upon the deepness of your connection.  In this place of darkness, it takes great effort to acknowledge the loss and even more effort to acknowledge the permanence of it.  This path in the shadows of one's journey can change your life.  Some get stuck in this place.  Some stay stuck for awhile and then begin to take tiny shuffle-steps forward out of the darkness and into the shadows of memories gone by.  Over time, one might move forward into the sunshine even just a little bit by focusing not on the loss, but the joy of what once was -- the connection  between two beings that filled you with happiness and joy for even but a part of your journey.  To celebrate the relationship that lasted only for awhile is a gift you can give to yourself.   Acceptance of the closed door named hope is essential to moving out of the shadows and into the light.

 As the quote says above, one of the hard things about loss is what do you do about the empty space the loss of connection leaves behind?  Some people don't want to fill the emptiness.  They feel that focusing on the space that once was filled is a way of keeping the memories alive.   It might seem as though hope is there -- even though the knowledge of reality says differently.  Denial keeps your feet from moving in any direction.  The fight to keep that sacred space empty can cause physical, mental, emotional and spiritual  issues.  Other people in our lives might not be able to understand why keeping the space free of anything else is so important to you and it could wear on other relationships.  

For others, filling the space might be easier.   They just get busy.  They get busy doing whatever it is their calendar can hold.  For some, they might try and throw meds in the hole or drugs at the space or pretend it doesn’t exist.  Some try to sleep it away.  The space can be filled.  It is our choice to choose what to put into the void.  I'm not saying this is easy by any stretch.  It's not.   Sometimes we don't choose arbitrarily.  Sometimes life helps us choose.  Either way, hopefully some day we can look back on that space of connection and name it and cherish it and turn our face toward the sun and life forward in our journey.

Does filling the space mean forgetting?  Absolutely not.    One perspective is that we are lucky to have had experienced something so beautiful along our path and that is why it is so hard to say good-bye.  It is possible to celebrate the lost relationship and fill the space they once held with healthy reminders or activities or new relationships that foster taking care of yourself during this time.    Self-care while spending time in the void is critical to moving ahead into the sunlight.  There also might be others in your sphere of influence who are fellow "void-dwellers" -- those people who are experiencing loss of their own.  Together you might find a safe place to reminisce and celebrate or express the gamut of emotions loss brings.  

Our life journey will bring losses of many types.  My hope is that we can realize that we are not alone on the path.  We just might need to look around for others who have emerged in the shadows or for those who have stepped into the sunlight of their own path to help. 

COMPASS POINT:  There are community groups called Griefshare that focus on paths of loss.   Perhaps they would be of help at this time in your journey.  Here is the link for more information:  www.griefshare.org.

Growing pains: thoughts on feelings

Whenever I think of the word "feelings"  my mind automatically goes to the first five words of the song "Feelings by Louis Gasté, 1973.  "Feelings, nothing more than feelings..."

WOW.  That's a blast from the past, isn't it? 

Embedded in my memory are those five words and the tune.  In my journey of late, this is the area I am concentrating on.  Let me admit to you -- this is hard work. 

Now, as you read this, you might think:  "You are a woman.  All you have are feelings and you are in tune with them being of the female gender."  I will admit.  I  have feelings, but I am not always in tune with them.  That's the problem.

Oftentimes it's hard to even put into words what I am feeling, so I have taken to carrying around a feelings chart I found online.   Words mean things to me -- and being able to identify what is passing through my mind and heart and spirit is meaningful to me -- and hard work.  In the past, I have buried my feelings until they have come up and out like a volcano (not always in a positive manner).  Now, on this leg of my journey, I am understanding that healing and moving forward means acknowledging what I am feeling and speaking it.   Good, bad, or ugly -- name it.  Don't judge it.  Name it.

Now this might sound kooky -- but  am beginning to practice naming things.  I look around and see things and name them.  Then I ask myself -- how does that thing, person, event -- whatever I named -- make me feel in this moment.  Not what it made me feel in the past.  Not what it might feel like tomorrow -- but right now.  The words I use go beyond your basic feeling words of sad, happy, angry -- and become more specific:  joyful, disappointed, loving, valuable, confused, and so on.

Blogging these very thoughts makes me feel vulnerable.

I believe that being able to name what I am feeling, not what I am thinking (which comes much easier for me), is part of my healing.  It is part of beginning to trust myself and others.  It is part of recognizing who I was created to be.  It is the foundation of being able to love in the agape way.  I want to grow in my relationships and in order to do that, the growth starts with me.

My therapist gave me homework.  I am to start thinking about and finish the following statement: 

"I feel _____________, when you _______________.  I need _______________." 

This is one of the hardest homework assignments I have ever done.  To not only have to NAME my feeling but to point out what brought that feeling on -- AND say aloud what I need (which is also extremely hard for me to voice) is exhausting.  It also is freeing.  It is teaching me I can acknowledge how I am feeling and what brought that feeling on  without laying blame -- and also frees me to say what I need in that moment.

I am experiencing growing pains.  This journey isn't all about smelling the roses.  Sometimes the path gets muddy and I have to get stuck in the mud and lose my shoes before moving forward out of the pit to more solid ground.