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.

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.

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.

No longer and not yet

As a music teacher, part of my job is to teach rhythm.  For many students the notes come easy and the rhythm is hard.  For others, the rhythm comes naturally and learning the notes is a battle.   I love teaching rhythm.  I teach the student to verbalize the rhythm, clap it, tap it and play it.  It is easy to make games and make learning fun.  After awhile I let the students tap out the rhythms on their own, looking at a pattern of notation.  I find that one of the hardest things are for students to observe the rests in the pattern.

Silence is a powerful tool in music.  The space between sounds and notes can make one hungry for more.  It can make also make an impact leaving time for one to think about what has come before the rests.  Rests of any length create an energy, stopping the flow of sound.  Without the rests music would not stop from beginning to end.

I have learned a lot about myself in the past couple years.  I actually keep a list to review for a couple reasons:  one, because there has been much to absorb and two, it is hard to remember everything and keep it fresh.  Learning and integrating what I have learned takes reminders.  I have found not all lessons are learned the first time.  Not all characteristics are noted cognitively and internalized in one circumstance.  Not all emotions can be analyzed until the tide of emotion has gone out and thinking has taken place in a more peaceful moment.  Sometimes it takes repeated tries for a new skill or awareness to sink in.  Being human can be frustrating (spoken like  a closet perfectionist)!

One thing I have learned about myself is that I can be impatient much like some of my music students and not want to honor the space between no longer and not yet in my life.

So much can happen in that space.

Processing.  Peace.  Breathing.  Sleep.  Joy.  Being mindful.  Listening.  Forgiveness.  Acceptance.  Silence. 

If I get impatient or excited and want to move to the next thing, or shorten the period of rest to a shorter rest than what is deserved, then I miss the impact that the rest can have in me.  I not only will miss the impact, but might not learn the entire lesson I need to learn.  I am learning that a fermata (a hold) over the rest, the space that is between what was and what will be is something that doesn't stop the growth in my life, but accelerates how cognizant I become of what I am learning.  Resting allows me to be mindful of the lesson and gives me the time to integrate what I am learning.  It forces to me wait on my myself or others and not move on to the new thought, the new habit, the new issue that needs to be addressed.

Some people call this place the waiting room.  Some people call this a plateau.  Some call it a rest.  I call it the place between what was and what is yet to be.  Regardless of what you call it...the value of honoring that space is undeniable.

The Waiting Room

I have discovered that I am an impatient person.  I think it goes hand in hand with that Control Freak problem I spoke of last week.  Sometimes I don't want to wait.  I want what I want when I want it and why should I have to wait???

Breathe.  Out.   In.  Slowly. 

So much of my life has been about waiting.  I don't get what I want (and sometimes I thank God that I don't) or in the time frame that I want it in or the way that I want it.  Contrary to the popular belief of our children -- adults don't always get what they want!

 If I have learned nothing else in the past four years it has been that there is great value in waiting patiently.  There is value in taking a step back and breathing in and out and noticing how deep my breath is.  There is value in taking time and not rushing ahead with my first response and action to a situation.   There is value in waiting and seeing how things play out - whatever that might look like.   There is value in holding my tongue and being still and listening first.

I love directing things -- the choir comes to mind here.  I love getting everyone on the same page musically and pulling the same dynamics and musicality out of them so that they are headed in the right direction.  Directing a choir is one of my greatest joys after the hard work of learning the music is done.  I watch the singers and inspire with my eyes and hands and movements while keeping time.  Pulling more from my singers than they ever expected of themselves is one of my greatest joys. 

But alas, in the waiting room I can't direct, orchestrate, push, prod or control.  I have found I must use patience.

Does that mean life stops while I am waiting for the "next thing"?  No, a good coping strategy is to continue to live life.  Move forward....step by step...moment by moment...day by day...but don't look too far ahead or live in "what if land".  When I do this I find that there is growth in the waiting room.  I develop a tolerance for the silence and the slower pace in the waiting.   I find that there can be peace in the waiting if I don't try to direct or control or orchestrate or push or prod the timeline.

I am also finding that the waiting room requires more.  More sleep than usual.  More "me" time than usual.  More slow walks - not for exercise but for reflecting, breathing, thinking, clearing my thoughts and worries.  A different kind of music to be played.  It requires a bit more ice cream, too.  :)  It requires a different type of kindness to myself which helps the stress of the waiting drain away - even at intervals or for a time.  It's not easy, but it's possible.