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.

To be or not to be...a snake.

Okay,  literally I am shocked to admit this  -- I have come to the conclusion I'd rather be a snake than a butterfly.  Let me tell you why.

I liken my personal journey as a growth process.   I have so much to learn not only about me, but about those around me and how I am in relationship to them.  I learn something new daily and am trying very hard to put into practice what I am learning.  I love learning about all kinds of things, but this learning curve at times has been so steep I have needed ice climbing cleats!  I look at it as a never-ending process for I will never learn everything and that's okay.  The point is, I enjoy the process of learning.  I enjoy the "aha" moment and the understanding it brings to my awareness.  Learning makes me feel alive.  Boredom doesn't exist on my path.

Anyway, back to the snake and the butterfly.  Paul and I have visited the Butterfly room in the Houston Museum of Science (VERY cool and worthwhile if you are ever in the area) a few times now.  You walk into the room and there are butterflies flitting everywhere!  There are all colors, shapes and kinds of butterflies all over the room -- swooping, resting, flitting, teasing.  It is a wonderful place and you can sit in there for hours on end just watching them fly all around.  You see chrysalises  hanging from leaves and know that more are on their way into the world.  It's a beautiful, fun place to be.

Two weeks ago I was weeding my flower beds and was surprised by a garden snake slithering in the grass next to me.  I jumped up and said -- "Well, hello there -- you just stay on your side and I'll stay on mine." -- to which he curled up under the rose bush and did promptly that.  I kept on weeding -- keeping my eye on him.  Also that week I had found a couple baby snakes in the basement.  (Yikes!)  Now they were smaller than the big snake, but I am a firm believer that all snakes belong outside, not inside the house.  I quickly call out to one of my snake charmers (Paul, Isaac, or Joel) who come to my rescue by picking up the snake and throwing it outside.  (Phew!) 

Being an outdoorsy kind of gal I have come across my share of snake skins.  They always freak me out a little bit, but I understand that the snake just doesn't fit in its coat anymore and must shed it if it's to keep growing.

On the other hand, the butterfly does almost the same thing by coming out of its chrysalis but with one difference.  The butterfly gets one shot at growth, lives for about two weeks and then dies.  The snake, however, keeps shedding when it grows and lives on to keep on growing.

My friends, I don't want a one shot chance at growth no matter how beautiful the change might make me.  I want to be like the snake who sheds the old dead habits and leaves them behind only to keep on growing and learning and shedding.

So, what would you rather be like? 

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.

There she goes...

A few minutes ago our college girl left for the second semester of her freshman year.

I miss her already.

It's funny how time seems to pass quickly when you are in the throes of moments  in your life you want to last and last.  Those moments where you are eking out every second -- because  you know it will never be captured again….until the next time...which will be different.  This moment is the only time you will have this moment. 

I think back to when I was a kid.  I grew up in the rolling hills of the State of Ohio.   It was the perfect place to spend hours outdoors.  There was much to do outside...trails to hike, streams to walk in, hills to bike, trees to climb and everything else that living in the country has to offer.  One of my summer time memories is of catching fireflies in the evening and putting them in a jar.  I would carefully poke holes in a jar lid so as to let them breathe after I had caught them.  They would rise up out of the ground by the thousands -- and it was a wonderful sight to see them glowing as they lit up the night.  After catching enough to make the jar glow bright, I would take the lid off the jar and set it on the ground and let them escape at their own pace.  Sometimes they immediately flew out and away.  Other times, I would come back to my jar in the morning and there would still be one or two left inside.

This past month  I got to see Moriah's bright light glow as she was home on break.  I loved seeing her every day -- even when she came home from work exhausted.  I loved having her at the dinner table with her brothers and listening to them tease and joke and share.  I loved watching them interact, seeing the hugs they would share and witness their teamwork in the kitchen.  I loved watching Christmas Hallmark movies with her as she painted her nails.  I loved hearing her stories from her workplace and talking about the next semester and what was in store.  The house was brighter with her light adding to the mix.

Today, as Moriah was driving down the lane, I felt much like I did as I released the fireflies.  I loved the glow of the fireflies and enjoyed their presence.  Yet, I knew I had to release them.  I knew that I had to share their glow with the rest of the world or else they soon would lose their light.

Go shine in your world, my daughter.  Your light is very, very bright.

Why do we avoid endings?

This week I have been thinking about endings.  I have been wondering a few things so I will put them in first person:  one -- why do I struggle finalizing the end of things -- projects, papers, tasks, et cetera?  two -- why do I think there is something still left to salvage when there is a clear need for more??  three -- why do I not like to say good-bye?  four -- why do I fear endings?

I find it hard to finalize projects because in my mind there is always more -- more to learn, more to perfect, more to strive for, more to write, more to think, more to discuss, more to catch..fill in the blank, more.  It's not the thought that it's not good enough - there is just MORE.  I can hold that note longer, have more resonance, find the perfect piece of art for that spot, make the recipe a little better, gain more confidence, find the connection more deeply....there is always MORE.

There is a part of me that doesn't think on empty -- I look at a glass with a few swallows of water in it as a waitress comes by and asks if I want more -- and I think to myself -- no, my glass isn't empty!  I don't need a refill yet.  It's the same feeling with leftovers -- if there is anything left - why make something new until you have eaten what is left from before?  If there is one more paper on that notepad...don't throw it away -- use it before you open a new one.  One more tissue - one more squeeze of toothpaste...you get the idea.

I find it hard to finalize projects because in my mind there is always more -- more to learn, more to perfect, more to strive for, more to write, more to think, more to discuss, more to catch..fill in the blank, more.  It's not the thought that it's not good enough - there is just MORE.  I can hold that note longer, have more resonance, find the perfect piece of art for that spot, make the recipe a little better....there is always MORE.

Then my mind goes to good-byes.  I would rather say "See you soon!"  "See you later!"  "Until next time!" than say "Good-bye!".  This is something I am noticing in myself that I wonder about.  Good-bye seems final.  Good-byes to people that I love, are just plain hard.  Closing down my studio time after time of moving from place to place to start again has been just plain hard.  Seeing friendships wax and wane -- is a form of good-bye and is hard.  Remember those seasons of life I spoke of in earlier posts? Sometimes, I want the season for a lifetime -- my lifetime.  Not the natural lifetime of the other person, thing, flower...et cetera.  I ask myself -- is it selfish of me to not want things to end?  Or am I afraid?

Maybe I don't like endings because I am a natural born planner (working on spontaneity in my life) and I can't foresee or forecast the next leg of the journey.  The unknown paralyzes for a time -- until it is known...and then most of the time once I have moved into the next phase I say to myself - see?  This isn't so bad!  In fact, it's better than expected! Maybe my fear of the unknown keeps me from ending things that should have been ended long ago -- like me hanging onto certain projects that haven't been finished for years  that are stored in tubs in the basement.  Or I think about that book I still have next to my bed that I don't want to shelve because I haven't finished it but yet I pick up other books to read instead of reaching for that one night after night.  Endings.  Hmmmm....

Maybe this is what my new approach should be when it comes to good-byes or endings.  Maybe I need to replace my fear-based thinking with possibility-based thinking.  I need to remind myself that with every ending a beginning starts.

If I think in beginnings...and look forward to beginnings...then maybe the endings won't be so scary.