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.

The wind is blowing

I'm sitting in my office listening to the wind whistling and blowing through the trees outside.  Funny thing, you can only hear wind if there is resistance creating a sound:  trees, mountains, buildings, or anything standing.  We can feel the wind, but can't see it unless it has picked up particles and are blowing them around.

The winds of change are like that.  You don't see it coming.  But you sure can feel change coming or see new the new circumstance that it ushers into your life.

Today, I feel like the past couple of years has been one long windstorm.  Some days, I haven't had the energy to stand in the wind.  Some days, the wind knocked me down.  Some days I tried to stand and got buffeted and blown around like a grain of sand at the beach on windy day.  Some days, the wind's pace was a slower breeze and I could stand the pressure against me.  Rarely were there a string of peaceful, stillness.  

Ever try to fly a kite in a storm?  Kites need wind.  They need steady winds that are gentle enough to not tear the tail off the kite.  Kites don't fly in peaceful days with no breeze.

I need to remember on days that I want to soar above my circumstances, but long for days with no breeze, that kites don't fly when there is no wind.

Help! I'm stuck!

All right.  You might not know this about me, but I tend to get stuck.

After living on the farm these past two years, I think I have now found every soft spot and underground spring -- and sometimes obvious marshy places -- on the farm.  And I have a propensity to get the tractor stuck as I am mowing.

I love to mow.  I have no idea why -- but I love mowing.  Hop on the tractor, rev up the engine, turn on the blades, and mindlessly go back and forth over grass that is higher than the "acceptable length" in my eyes and create the most wonderful fragrance in the outdoor world:  fresh cut grass.

Okay....as you are groaning and I am smiling, let me get to the point of my thoughts before you run out to the garage and try to start up your mower in February.

I also love to organize.  One of my winter projects was to clean out files in my file drawers.  I only have two -- so it shouldn't be a hard task, right?  I got together all my tools -- trash bag, new file folders, and organizing tabs and clips and brought out the first huge file of paper and stopped.

Viewing the contents of the file brought back old feelings, situations, and in my mind's eye, I was right back in the old place of my journey that this paper represented.  Let me tell you this:  I got stuck. 

As I was reflecting and reading the file the questions begin to roll:  To toss or not to toss?  THAT is the question!

If I hold onto something that doesn't bring joy, what good does it do me?  What good does it do my spirit and my psyche in this new part of my journey?  Let me tell you -- deciding whether or not to toss those memories was extremely hard!  I had things dating all the way back to foreverland in that file drawer!  All kinds of questions zipped through my brain.  Did tossing the negative things stored in that drawer mean they never happened?  If I kept only the good things and I died and someone else had to go through the drawer would they think I lived a "charmed" life and not get a realistic picture of my struggles?  (Yes, that was one of the things I really thought.)  What would my life look like without certain memories in that drawer? 

As hard as I could, I tried to equate cleaning out the drawer to mowing...and not getting stuck.  I didn't want to get stuck in the bad memories or things that represented mistakes or errors in my journey.  And I realized that if I learned my lesson well, I didn't need to keep a reminder of that time.  The lesson was learned.  I needed to move on and not focus back there on that time I got stuck in the spring that I KNEW was there because I had gotten stuck the last time I rounded that area of the fence line.  I just needed to remember that the underground spring was there -- and avoid getting stuck by rehashing the last time I got stuck.   I needed to recognize when the front wheels started getting wet and stop - and back up -- and go around that area.  Lesson learned.  No need to sink in that hole again. 

Did I need files of memories to not get stuck again?  Nah. 

Realizing that I could avoid getting stuck in that same old thought process, same actions, same rehashing of old times that didn't extend grace to myself or someone else was not helping me in my footing on THIS hill I am climbing; on THIS part of my journey.   So I finally did what I needed to do and cleaned it out.

I left room for new memories -- new files -- good and bad because the cleaning process is usually not a once and done project for me.  I am always finding things I should have "thrown out" but wasn't quite ready.  Now I am ready.  Ready to see the deep grooves in the mud and not go there anymore.  Ready to recognize the rut in my thinking and speech and actions.

Ready to mow, anyone?

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.

Weebles Wobble

  Remember the toy in the 1970's - -the Weebles?  I can hear the commercial slogan in my head "Weebles Wobble but they don't fall down."  It brings back many childhood memories and now makes me think as an adult -- how cool would it be to wobble or come dangerously close to falling and yet spring back upright again and not fall down!

I have been thinking about resilience lately:  what makes some people resilient and others not so much.  I have witnessed in my own life people whom I would label, if I could, a Weeble.  I see them rise above or walk within their struggles in creative ways and continue living.  They are heroes in my opinion.  It's not that they aren't down at times or don't complain about their circumstances at times, but I think the difference is that they don't get stuck in their circumstance.  That is the difference.  They don't get stuck.

I have witnessed these people in my life.  They are people who face adversity in many forms:  chronic physical illness, mental illness, hard times of many sorts, relationship fractures, seasons of darkness or distraction or feeling lost, and the list goes on and on.  I am attributing the difference of the Weebles to their "Wobble Factor".  Some people wobble.  Some people fall.  Some people wobble a little.  Some people wobble a lot.  Some people wobble right to the edge of falling over or even lay almost parallel to the ground at times.  Some people get up after falling once or twice.  Some people never get up again.

I have been reading a book by Dr. Brene Brown called The Gifts of Imperfection.  In her studies she has found that there is a connection between hope and resilience.  She says she has found that hope is NOT a feeling.  That is contrary to what I have always thought.  There are scriptures about hope all through the Bible that I have read my whole life.  What she says adds to my thoughts about hope and makes sense.  In her studies she found that hope is a way of thinking (ch.3 page 73).  "Hope happens when:  we have the ability to set realistic goals, we are able to figure out how to achieve those goals including the ability to stay flexible and develop alternative routes, and we believe in ourselves."

This makes sense to me.

I know that in my life I have experienced things that have made me wobble.  Some things made me wobble a little.  Some things have knocked me to the floor.  Some issues were short lived.  Some issues aren't going away anytime soon and might be there forever.  If I focus on the issue itself, life gets dark and I find I lose hope.  But if I can look around my issue -- over, under, around and make a goal of how to live with it, create a plan, put the plan into action and keep it flexible to change under added circumstances, and believe that I can move forward in my life in some positive manner, then in my thinking that is the "Weeble Factor", i.e. resilience which fosters hope.

Weebles Wobble but they don't fall down.


Lamentations 3:21-26 (NKJV)
This I recall to my mind, therefore I have hope. Through the Lord's mercies we are not consumed, because His compassions fail not.  They are new every morning;  Great is Your faithfulness.  "The Lord is my portion", says my soul, "Therefore I hope in Him!".

The Next Chapter

I have shared in my past posts that I am an avid reader.  Reading to me is like the best dessert -- an escape -- something I look forward to in my free time to open my mind to new thoughts and topics and hopefully not only escape but learn something as I read.  As I read, the more I get into the book the more I look forward to....the next chapter.  In the next chapter, the plot continues and the information I gathered in the story line culminates, furthering the journey, no matter the genre of the book. 

Today, in my life, I am very close to ending one chapter and beginning the next.  In just a couple days the transition will take place with a new Chapter Heading and life moving forward.  Am I looking forward to this chapter?  Oh yes, I definitely am.  Even so, life continues whether we want it to or not.   Alas, I am ready for the next chapter.

Thinking about the next chapter makes me think of a few things:  does looking forward to the next chapter mean that I want to totally disregard the one I am finishing?   Do I forget this chapter and all that I have lived?  No.  Not in the least.  In this chapter of my life I have made wonderful friends and positive things have happened in my family.  It has been exciting and full of changes on many levels.  I have been allowed to be a part of so many people's lives and walk alongside them.  That is a privilege I do not take lightly.   I have seen our children grow and mature and walk into their own personal next chapter.  I have experienced the love of a man who loves me deeply and I have loved him in return and known such joy for the effort.  Some of my life long dreams have come true.  There has been so much good in this chapter.  But I would not be sharing the whole story if I didn't also mention the disappointments and hurt that has been along the path.  Life doesn't come without potholes and I have experienced what seems like more than my share of them on this leg of the journey.  The lessons I have learned along the way have been priceless, however.

So that being said and remembering that the journey is a culminating one, I take those memories and lessons and joys into this next chapter.   I bring with me new connections and deep friendships that I didn't have previously.  I don't disregard the lessons learned, for hopefully I will have learned them well and  be aware of the same potholes again.  I look forward with anticipation to the next chapter, embracing the transition fully.  It's not good-bye -- it's time to live the next chapter!

Pain Scale

I found this pain scale at my orthopedic doctor's office and it made me think.  Number one, I was drawn to the little faces that try to express the words to describe how a person might feel when one is in pain.  ( I like pictures as well as words.)   Number two, it got me thinking about the pain in my own life and if I could relate to what it described.   Of course, this little scale is describing physical pain.  I have had a few experiences with physical pain....from stepping on a nail as a kid...to a having the branch of a tree puncture my eyeball...to two root canals....to a frozen shoulder...to aches and pains after physical labor...to childbirth.  I could rate all of those incidents on the scale...with childbirth (without an epidural) and the exacerbation of the frozen shoulder in certain movements right up there at a 10. 

My mind then went beyond physical pain.   In my opinion there are three categories of pain:  physical, emotional and what I would call spiritual pain.  In my own life I have experienced all three of those types of pain.  I have experience emotional injuries from relationships that have sent me down a dark spiral into depression and grief.  My faith has been severely tested and I believe I have experienced what is called the "dark night of the soul" where I have lost my hope and faith and have ached inside my soul.  In looking at the scale above and modifying it for emotional pain, I believe that I have experienced a 10 on the emotional and spiritual pain scale, too.

Having spent my whole life interacting with people of all shapes, sizes, ages and abilities in many circumstances, in work and in my personal life, I have had the opportunity to  observe people who are in pain.  I have observed all three types of pain.  Some people are able to cope with their pain and continue to live life as positively as they can.  Others I have observed are crippled by their pain - stopped in their tracks.  They can focus on nothing but the pain and life seems to stop for them.  Sometimes it stops for a short season.  For others, they are paralyzed where they once were productive.

Thinking about that leads me to questions such as:  What makes some people push through their chronic pain?  What makes some people who have chronic or intermittent pain not be able to continue to live life?  What drives each type of person and where do I fit in those two generalized categories?  I know where I WANT to fit.  I want to be a survivor.  I want to be not just one who survives, but one who lives life fully even in the midst of the pain.  I want to affect those around me positively.  I don't want to be a complainer.   I want to be someone who doesn't give up.  I want to have hope until the day I die that things will improve...the pain will lessen or even one day disappear.

I don't have the answers.  I have no idea how others cope with the pain they experience other than I observe them adapt and accept and continue to move forward.  Does moving forward mean I don't have pain?  No.  Does it mean that I downplay the emptiness or spiritual darkness I experience?  No.  It doesn't mean that I ignore the pain and pretend it doesn't exist.  It means I continue to live.  I continue to pray.  I continue to believe that God is working on my behalf and sees my struggles.  I read the Scriptures.  I read or listen to topics that bring hope.  I lean on those that come around me for support and am thankful when someone reaches out to me and calls or sends a note or text.  It means I seek help for my pain whether it be in physical, emotional or spiritual therapy.  It means that I search for something good...even if seems small and minute.  It means that I remain thankful that I am still breathing and able to see the beautiful sunrise for another day.  In doing so, I cope.  I accept.  I live - and sometimes the pain dissipates or I become strong enough to more forward IN SPITE of it.