L O V E

"If you are not too long, I will wait here for you all my life."

Oscar Wilde

Dear Darling, Happy Valentine's Day.  It has been three years and two months since I have kissed you.  I miss you, Babe.  I dream of you often.  As the years have passed~ Spring, Summer, Autumn and Winter continue to flow as scheduled.  The children are growing, fine young people.  Our home, still safe and comforting.  The river so surreal, a beautiful gift everyday.  Sunrise and sunsets, with birds flying and making sounds.  The fish jumping upon waves of diamonds.  Clouds, kissed by light, whisper and beckon .  

The Stars, though, as beautiful as they are, To me, do not shine as brightly.  However, the Moon, is as mystical and glowing~ as ever before.  Blooming and ever-changing, like a Rose.  

I could go on and on.  Words really can't explain the transformations that occur moment by moment in the daily life.  For You, words do not have to.  You penetrate my heart, existing in all that my senses allow. ~~~Breathing~~~

“There is a time for departure, even when there is no certain place to go.” 

Tennessee William

****Hello, this is Breathing, I just wanted to Thank You for all the support you have given to Pulmonary Fibrosis, as well as me.  My 'counter' indicates 13,208 people have come to my blog, from many different countries.  I hope our family's experience has helped to raise awareness.  I do know this blog has helped me through such a difficult time.  I have shared with you our experience and have never held back, because most of this I typed in 'real-time'.  Now, I have transformed a bit since my husband's passing.  Not too much, but just enough to somehow realize that I have many thoughts that are better realized in my own time.  I will not post as much here, but anything that seems newsworthy to our cause will not be ignored.  Thank You my beautiful friends.  You show support just by coming here and reading this:

The word "pulmonary" means “lung” and the word "fibrosis" means scar tissue – similar to scars that you may have on your skin from an old injury or surgery. So, in its simplest sense, pulmonary fibrosis (PF) means scarring in the lungs. But, pulmonary fibrosis is more serious than just having a scar in your lung. In PF, the scar tissue builds up in the walls of the air sacs of the lungs, and eventually the scar tissue makes it hard for oxygen to get into your blood. Low oxygen levels (and the stiff scar tissue itself) can cause you to feel short of breath, particularly when walking and exercising.

Also, pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike (see “Causes and Symptoms” below). The PF family of lung diseases falls into an even larger group of diseases called the “interstitial lung diseases.” Some interstitial lung diseases don't include scar tissue. When an interstitial lung disease includes scar tissue in the lung, we call it pulmonary fibrosis.

The most common symptoms of PF are cough and shortness of breath. Symptoms may be mild or even absent early in the disease process. As the lungs develop more scar tissue, symptoms worsen. Shortness of breath initially occurs with exercise, but as the disease progresses patients may become breathless while taking part in everyday activities, such as showering, getting dressed, speaking on the phone, or even eating.

Due to a lack of oxygen in the blood, some people with idiopathic pulmonary fibrosis may also have “clubbing” of the fingertips. Clubbing is a thickening of the flesh under the fingernails, causing the nails to curve downward. It is not specific to IPF and occurs in other diseases of the lungs, heart, and liver, and can also be present at birth.

Other common symptoms of pulmonary fibrosis include:

• Chronic dry, hacking cough
• Fatigue and weakness
• Discomfort in the chest
• Loss of appetite
• Unexplained weight loss

The Pulmonary Fibrosis Foundation is here to help you understand what it means to have pulmonary fibrosis. You can always reach us through our Patient Communication Center at 844.Talk.PFF or by email at pcc@pulmonaryfibrosis.org.

~~~~For my Baby, On Valentine's Day~~~~

"FIELDS OF GOLD"

You'll remember me when the west wind moves
Upon the fields of barley
You'll forget the sun in his jealous sky
As we walk in fields of gold

So she took her love
For to gaze awhile
Upon the fields of barley
In his arms she fell as her hair came down
Among the fields of gold

Will you stay with me, will you be my love
Among the fields of barley
We'll forget the sun in his jealous sky
As we lie in fields of gold

See the west wind move like a lover so
Upon the fields of barley
Feel her body rise when you kiss her mouth
Among the fields of gold
I never made promises lightly
And there have been some that I've broken
But I swear in the days still left
We'll walk in fields of gold
We'll walk in fields of gold

Many years have passed since those summer days
Among the fields of barley
See the children run as the sun goes down
Among the fields of gold
You'll remember me when the west wind moves
Upon the fields of barley
You can tell the sun in his jealous sky
When we walked in fields of gold
When we walked in fields of gold
When we walked in fields of gold

Twisted Knots

Hi Babe, It is me.  In December it will be nearing the 2 year anniversary when you departed my arms.  Only a few months away.  I have been working along my little path and even when I can't see where it is leading, I have been sure to stop and soak in the beauty around me.  For that alone, I know you are proud of me.  Fall is now here and the leaves on the trees are changing color.  The coolness in the air surrounds.  

I have been maintaining and managing to the best of my abilities.  The house is buttoned up with the exception of one repair that I would like to make before Winter sets in.  If I can get that completed then all my homestead goals will have been fulfilled for this year.  The garden has been the best it has ever been.  It was a record year.  I think it was because I laid straw down to keep the weeds out and it worked very well to hold the moisture in for the plants.  

The river bank?  It is still the same river bank, growing as wild as ever.  Although two trees, the same ones you kept cutting down so it would not obstruct our view, came back. They were growing big!  So big, in fact, I knew it was something that I had ignored and once they began to take over, I contemplated just letting them grow.  I wondered if I should just let them grow and tried to imagine not seeing the water from the house anymore.  I thought it might be a blessing as a windbreak.  But, deep down I knew I was just justifying keeping those big weeds around because I didn't know how to remove them.  So, I made a phone call and had someone cut them and immediately was glad I did.  I vow to catch them early next Spring so that they will not grow out of control anymore.

You have really changed my life.  Given me the opportunity to see what my own capabilities are.  I am even thinking about my future.  Trying to imagine in a very real way what I would want the second half of my life to look like.  I can only see a foggy outline.  Snippets of things like me still living and taking care of our home, River-Rose.  Each year living more simply and naturally.  I realized that I only envision myself doing tasks that make me extremely happy- only have to do with the family we once had.  Now, our immediate family has dwindled as my oldest has left the nest and our youngest has just become a legitimate teen at 13 years old.  I try to imagine what the house will sound like when there is no one to call out to.  What type of thoughts will roam through my brain as I live my existence alone?  Will I be comfortable with the stillness?

I realize that you and I had an age difference and that is why we joked you were the geezer.  Still, your life ended too short from Pulmonary Fibrosis at age 50.  Which is an age that I think is still very young.  When I transfer that to being a widow at my age, it seems I have a long road to walk down in solitary.  This is not how I pictured things would be for me when you and I were healthy, before this disease came into our lives. At the same time, the idea of being alone does not cause me enough discomfort to want to be with anyone else.  To the contrary, it actually prompts me to discover how I can be more at peace with myself.  To perhaps imagine finding a different kind of joy in my journey.  And that is why I contemplate.  I realize that I must imagine what things I want to bring into my life that will fill my future days.  I cannot be complacent in a comfortable area.  If I would like my life to be a journey of joy, I cannot wait for joy to knock at my door, I have to reach out and work for it.  

Money, travel, clothing, things, may bring a little better sense of security to ones mind, but it doesn't change what lives in our mind and soul.  I have picked up and left and driven for days.  I have found the most beautiful, exciting, and serine places.  In the wrong frame of mind, none of it filled me.  I could have the ocean outside my window, sitting in a beautiful room, and still be filled with twisted knots.  

Just a thought, My Love.  Thank You for bringing me to a moment in time that I have been forced to be truly honest with myself.  Even though I have not discovered the answers, the period of discovering purpose is a gift in itself.

With All My Love....

Write This Down

Exactly three days after my husband passed away, I was asleep in bed and felt a firm hold upon my right hip which startled me from sleep.  There, above me, was my husband's face.  He had a very intense look coming from his eyes and it felt as though he looked directly into my heart.  I sat up and and stared at his face.  Overwhelmed, I asked him over and over again, "Is this really you?"

With his eyes he told me firmly, "Yes."

I asked him if I could touch him, and again he told me -Yes. 

I put my arms around his shoulders and buried my face into his neck and just cried and cried.  I was amazed at his patience allowing me to do this for it seemed, as long as I needed.  Then, he held me away from him and looked deep into my eyes, he told me, "Write this down..."

I was unsure of what he was about to tell me, but I knew he was going to tell me a message.  A very important message.  I did not feel prepared and told him to let me find a pen and paper.  He just repeated, with a very intense look in his eyes, "Write this down."

I ran around the room looking endlessly for a pen and paper when suddenly I found myself behind my very first typewriter, one that I had used as a teenager.  I put paper in the typewriter and my fingers on the keys, and told him I was ready.  Then, he disappeared. 

This time, I really woke up from my sleep and I cried out into the empty room, "Please tell me!!" 

But, there was no response and I knew it had been a dream.

For many days, I would fall asleep mentally asking him to come back and tell me what his message was.  Days turned to months and the intense dream I had, after my husband had passed, stayed with me and I often wondered what it all meant.  Until one day, it hit me.  I realized what I believe is the answer.  The message he wanted me to know is exactly what he told me.  To simply, Write This Down. 

If anyone wonders why I stay motivated in sharing parts of our story, his illness, and our lives, it is because I think he wanted me to write it down.  How sharing these things may help or affect others, I will never really know, but I do hope some good will come from it.

xoxo

The Grief Channel

A year went by.  I wonder, where did it go?  Yes, I survived, but what did I learn and was I truly present in the moments that have passed?  I try to remember exactly how I felt or what I was doing at this time last year.  I can't.  Only snippets come back to me.  I remember last year, on New Year's Eve going to bed early.  I remember the relief of sliding into bed and pulling the soft blankets around me, laying my head on the pillow.  I remember sleep was my only haven -and even then, it was a minimalist haven, at best.

My husband passed away on December 15th, 2011, from Pulmonary Fibrosis.  He was the love of my life.  The only person that knew all of the real me.  When he was alive, I had somehow elevated him to hero status.  In my eyes, he was the only one who defined intimacy.  My partner, my mate. 

I was in denial, looking for him around the house.  Still, opening my bedroom door and seeing a faded image of him in blue-jeans and glasses, smiling, as I came through the door.  Then, poof!  The image is gone, he is no longer there, and the impact of that would immediately bring me to my knees.  No!  Where did you go?

I was in auto-pilot mode.  Like a zombie, moving slowly in my mind. Coiling up his oxygen tubing.  His glass of water on the nightstand.  Folding his glasses.  Fluffing his pillow.  Looking at those stupid meds on the table.  Those were the first to go and I bagged them up with disgust and anger. 

Then I would look for him again.  It was as though I had misplaced him.  I can't find him anywhere.  I still feel that way.

Then, the crying.  Constant crying.  Not the kind your mind thinks about before hand and then the tears come.  No, it was just the immediate tears before the brain has a chance to catch up.  The grief, palpable.  It was physical.  The tears during the day, then at night.  At bed, my mind ripping through the tangible love and experiences we shared was like torture.  Then the sleep comes and I see him, he comes to me.  Upon the first collective consciousness of morning, a thud in my chest and the tears come again.  It goes like this, on and on. 

Despite the physical ache and heart wrenching longing for my husband, there was also a parallel feeling that somehow he was watching me.  I could just feel it.  Even from the very moment that his eyes lost their sparkle and I knew he was gone.  I felt him watching me. 

Everything I did from that moment on, there was a deep feeling that he was seeing it all.  There were even moments within me that I felt shy about this.  In our marriage, although we shared the most intimacy I had ever experienced, we also had established a certain level of manners and respect for each other.  There were just things we did not do in front of each other.  Great.  Now he has the advantage of seeing all of those things about me.  But, what could I do besides just being me?  I hoped that wherever he was, he had a deeper understanding of human-nature.

Somehow months passed, although, my emotional disposition had not.  I stayed in a foggy, grey area within the recesses of my mind and heart.  Stuck repeating the same day, every day.  I told myself that grief has no time limit.  I knew in my heart what I was doing is what I needed to do.  All the while, I still felt our connection, I still felt he was watching me.  I began to consider what things where like from his point of view, wherever he was...

Just for one second, I contemplated the idea that he was truly watching me and it wasn't some sort of trick my mind was playing on me.  What if he was somehow still connected to me?  What if he died, but still had his own thoughts and feelings?  What if he was checking in on me and maybe flipping through others he cared about, too?  My mind imagined him flipping through TV stations of all the people that he loved.  His children and mine, his mother, ex-wife, siblings, best friend.  I could see him doing that.   Just checking in to see what's going on and seeing our daily struggles in a place he no longer dwells.  Then he gets to my channel.  There she is crying.  There she is grinding her teeth at night.  There she is crying again. Over and over. The Grief Channel plays the same thing all the time.

One day, I was blogging on the computer and the feeling came to me that he was watching me again.  A feeling of approval came over me, as though this made him happy.  I realized that I want to make him proud.  We are still in a relationship.  When he looks at my channel, I want him to beam with my progress.  It was a turning point for me.  It was the moment that I realized I had to fight to add more texture and experiences back into my life, so that I could share it with him.  To be honest, I haven't stopped crying, he knows that.  But, I have added other things into my life in addition to the crying.  Such as laughter, silliness, and love.  I have changed the channel.  The more I do this, the more proud I feel he is.

Somehow, I am here.  A year later.  I survived.

Falling Backwards

The other night I had a dream about being in my Husband's truck.  This was one of my most favorite places to be.  He was a long-haul truck driver and together we have had many adventures on the road.  I have always loved the promise of beginning a new trip and everything that the road ahead held for us.

In my dream, I was in the driver's seat behind the wheel. 

(I reality, I never drove his truck, as I simply would not have a clue how to do so.)

 I am backing the truck into a parking spot, when, in my dream I suddenly had a feeling of falling.  From a distance, I could see myself in the truck and it is precariously perched on the tiniest tip of a very tall and steep mountain.  The whole trailer of the truck is hanging off of the mountain.  I am in the truck and trying with all my might to keep the truck on the top of that hill.  But, gravity gives way and soon the truck and I are falling backwards. 

The next thing I know, my son and I step out of the truck into a sunny and sandy location.  It is a little town.  We step into a house which is simple, bright and clean.  It is pretty there. 

I, then, looked at my son and said, "This isn't so bad.  Let's make the best of it."

That is all I remember of my dream.  I wonder if it is subconsciously how I feel after losing my husband to Pulmonary Fibrosis.  Trying to hold on and work so hard to save the things that my Hubby and I built together.  Our house, family, dreams.  Sometimes feeling as though no matter how hard I work for these things, there is a sense of falling backwards.  I also wonder what would happen if I just let that occur.  Would I find myself in a spot that I would say,
"This isn't so bad.  Let's make the best of it?"

What Time Will You Be Home?

I remember, shortly after my husband was diagnosed with Pulmonary Fibrosis he said to me,

"I have an idea.  Let's just go along with our lives as we always have and pretend that this (diagnosis) never happened." 

"That's fine in theory."  I said.  

"I wouldn't mind trying that, although how long do you think that will work?" 

We then had a long discussion about the pros and cons of denial.  As though denial is something we could "decide" to do.  Which is kind of ironic considering the discussion alone meant we were accepting what has occurred.  Throughout his illness, we both experienced different levels of denial.  Within the months that followed, he would toss and turn in his sleep and the next day, I would ask him if he remembered what his dreams were about. 

"I was dreaming about being on the truck."  Or, "I was at work."  Was his usual response. 

Months later, when he was unable to walk or leave his bed -it was my turn.  At night, I always dreamt about he and I holding hands and walking.  The dreams were so strong that when awaking, I would have to stifle my sobs, so that he would not hear them.

Even up to the few days prior to his passing I lived in a world of denial, while he, on the other hand, seemed to have come to a strange level of acceptance. 

He would say to me, "When I am gone, please take care of yourself.  Do not just settle for someone new.  You deserve the best." 

Meanwhile, I would say to him, "You can't die just yet, we haven't taken care of such and such...." 

I did not do the proper thing that most caregivers should do, giving him permission to go. 

I never did grant that to him.  It was a very selfish thing on my part and I knew it, but I just couldn't tell him it was okay to leave me.

The whole time I took care of his everyday needs and with my own two-eyes saw his strength leaving him.  We even discussed his wishes for after he was gone.  In advance, I went through the proper channels of arranging all of these things, just as though I was scratching off a list in my day planner.  Yet, I was in denial that there would ever be a time when he would physically leave me. 

My hubby died in my arms and I literally saw the light leave his eyes. 

But, I was surprised.  It took me off-guard.  Now, I wander around the house looking for him. 

I rush up the stairs to tell him about my day. 

I turn corners and expect to see him. 

I call his cell phone to ask, "What time will you be home?"

Thanks For The Ice Cream, Babe!

Naturally, after my husband passed on, my mind and heart has been filled with many emotions.  I walked around the house completely lost.   The strongest sense of desire to hear from him, to know that he was okay, filled my every being.  I did things (and still do) like talking to him as though he was in the same room with me.  After my morning showers, I write him little messages on his side of the misted bathroom mirror such as, "Where are you?" or "Are you okay?" and of course "I love you". 

One difficult night, I finally fell asleep and dreamt about him.  We were walking through some kind of airport together.  My hubby, myself and my youngest son.  My hubby was beautiful.  Blonde hair glowing and he had a slight smile on his face.  While we were walking, I was was talking to him in a very animated manner. 

What do you think I was saying to him? 

How much love him? 

Nope.

 I was riding him.  Completely yelling at him. 

I recall my exact words to him, "We used to do so many things!  We never do anything together anymore!"  Then, I mentioned his laugh.  "I don't even hear you laugh anymore!"  

The whole time I'm going on and on, as though we were having some form of a marital spat and he is just walking along with that little smile on his face not saying a word.  Next thing I know, the three of us head out of the airport through double doors.  Then we were outside, in a really cute, quaint, little town.  I felt my mood change and I thought to myself, "Let it go.  Stop being mad, it's not too late to enjoy the day together." 

I said to my husband and son, "Let's get ice cream."

Now, we are suddenly at an ice-cream shop looking at a huge variety of flavors.  We each chose a flavor, although I do not remember what kind.  Then we strolled along the wooden walkways of this cute little town.  Trees lined the walkway and there were storefronts with old fashioned awnings.  People were mingling around and the three of us just happily walked along, licking our cones.  

Then I woke up.

The dream was so vivid in my mind and it left me with a sense of being content. 

I felt grateful that we spent family time together, although I wished I would have said more wonderful things to him, instead of yelling at him.  That part, I wish I could have changed.  Nevertheless, the feeling of the dream stayed with me and after that morning's shower, I wrote on the misty mirror,

"Thanks for the ice cream, Babe!" 

photo via