where are you Heather???

This was the theme of a made up song by my niece Addison, when my mom shot a phone video of her to send to me while they were up at our lake house.  The big blue eyed, crazy haired, almost 4 year old in her white suit with the pink lace trim and tiny black polk-a-dots singing "where are you heather..where are you heather..where are you heather" You can hear my mom in the background prompting..."is that all you want to say?" and Addison reply's "yep."  Well, despite a few leading questions about "driving" the boat and getting sand in her toes - really - isn't that all there is to say...where are you.

The last few weeks I have felt that constant pull of where am I?  It seems since the acute phase of this back pain has ended and the moderate chronic pain or ache has taken over, it carried along with it a lot of fatigue.  So, I have "tried" to get places.  Tried and missed.  First it was the 11:30am lunch for our good friend who was in from out of town - one shot deal - swing and a miss.  I tried for two and a half hours to slowly get ready...try and eat despite my many trips to the restroom...and finally while on my way at 1:30pm and still feeling sick enough that I realized driving 20 minutes was not safe - I pulled into my parents driveway and hung up the race.  Then there was the movie night..the impromptu meet up for drinks..the swim meet.  I tried, and feel like a constant failure.  Trying to get places to battle through the fatigue, light headedness, the upset stomach, the back pain, is like trying to get out of quick sand.  You feel like you are pawing at unsteady ground, and it all begins to collapse on top of you.

Then for me begins the slide into a bit of a depression - the what the "f" - really - this is it - this is what the whole damn thing is - a constant cycle of trying and trying and "succeeding" at the mundane.  Then there is the anger for the pity party - how dare you be upset - think of all the other awful things you could be dealt with - pull yourself up damn it - then the sadness - "I am trying my f'ing best - but to the world it doesn't look like trying at all"

Where the hell did I go...

fairytales

Just wondering if while I was sleeping someone pricked my finger on a needle or fed me a poisoned apple since the level of fatigue this morning was closer to that of waking from a altered state - with my limbs so heavy and head so fogging I thought I must still be dreaming.  Decided not to fight it - and just stayed in bed.  If anyone has the antidote, fairy godmother or prince charming that erases all spells send them my way.

Whisper

Its been a month of changes, I found out that indeed 40 feels a bit different, I lost my last living grandparent, and I experienced a physical pain I did not think I could bear.  Its been a long 4 weeks.  Its taught me much, first, 40 isn't the end of the world, but I sure did notice a few more wrinkles in places I didn't know wrinkles existed.  I was again reminded that loss at any age is still loss, but I certainly have grieved differently than the 10 year old girl that lost her first grandparent.  The heart still aches, but for every loss the ache is unique.  And finally the pain, a pain I have witnessed but never experienced.  A pain I am grateful continues to lessen - a pain that gave me the gift of recovery.  Chronic illness seems to hold the euphoria of winning like the carrot on the string, never to be grasped, only to get close.  I understand that may be the way it will be from now on, but this pain reminded me that the body does heal, and sometimes at a remarkable rate.  Every day I feel blessed yet every day I miss the ease of living, the ease of being able to eat whatever is in front of me without worry, the ease of knowing the only demons was an over anxious mind which could be put to good use, every day I grieve a little when I watch friends and family live the way I use to live, with the ebb and flow of ups and downs - yet every day I count all of my immense blessings - and choose to focus on what can be won - I watch with awe instead of envy of those blessed with a strong physical constitution - and I hope that for me the tide is a changing...

Tribute to my Grandpa...Robert Joseph Kelly...we miss you.

It is with a heavy heart, that we each begin our own process of grieving the omnipresent wonderful human being that blessed us with 96 years of life.  The odds were not in our favor that we would be honored to have our Grandpa in our lives forever, but it did begin to feel like that was a magical possibility.  And I imagine, in the coming days, weeks and perhaps years ahead many of us will have that feeling that we are forgetting something or more importantly someone whom we have grown so accustomed to having by our side.  Then we will catch ourselves in the reality that he is no longer physically here with us.  However we can be comforted in the fact that he whom has bared witness to so much of our lives, is never far from reach.

With the military honors we have here this evening, it made me think of our countries’ declaration of independence, those famous words of inalienable rights, “Life, liberty and the pursuit of happiness. “

This phrase could not be more fitting for someone who’s life spanned nine decades, and I find it profound that in his calm and steady nature, Robert embodied this American ideal – He was drafted to serve our country, thus risking his life for us.  He was a member of the “greatest” generation that secured our liberty.  But most importantly and I believe the most difficult of those inalienable rights, those that most of us spend a lifetime pursuing, he attained – happiness. There are many men, despite great wealth, fame, or success that fail in this pursuit.  This joy for life and love for family and friends is what I find most extraordinary about our Grandpa.

In spite of a life that was filled with hardships and disappointments, his gentle spirit, kind manner and outlook on life allowed him this gift that no one can give to you, you must find it and harness it yourself.  It’s those that are truly wise, that understand in the end, happiness, a joyful spirit, and those you love are the only things worth fighting for.

I thought back on our childhoods wondering if I was exaggerating or manipulating memory, but I am confident I am not.  I have absolutely not a single memory of my grandpa raising his voice or speaking unkind to those he loved.  In all the interactions I witnessed between our grandpa and our grandmother, I cannot go into the recess of my mind and find one time that he spoke with a harsh tone, that he used the veil of sarcasm to hide irritation, or that he even gave a cross glance – all I can remember is a patient understanding and love, a wry smile and a knowing glance. This is remarkable.  And though there is much about our grandfather that I admire, this consistent and dependable nature is high on the list.

The past few days the words from the famous poem, “Do not stand at my grave and weep” kept coming to the forefront of my mind.  And to be honest, I thought it quite strange, because though our Grandpa taught us much by example, he was not a dramatic speaker, sitting us down for philosophical chats – he loved to tell stories and did so with much expression – but he was not one to quote Walden or Yates.

But I looked for the poem anyways, to read it more closely, still unsatisfied with the connection, I realized I knew nothing of the author, and it led me down a much more interesting path than the poem itself.  The Wikipedia entry for Mary Frye, is simply as follows

A Baltimore housewife and florist, best known as the author of the poem "Do not stand at my grave and weep," written in 1932. 

She was born Mary Elizabeth Clark, and was orphaned at the age of three. In 1927 she married Claud Frye. 

The identity of the author of the poem was unknown until the late 1990s, when Frye revealed that she had written it. Abigail Van Buren later proved her claim. 


As I looked further, a little more can be found…she wrote the poem, that just “came to her” for a friend…

“Mary's friend was a German Jewish woman called Margaret Schwarzkopf. Mary Frye said that Margaret was her closest friend and she felt she was unable to visit her dying mother in Germany due to the anti-Semitic feeling at home. This led to Margaret Schwarzkopf's tearful comment to Mary Frye, after a shopping trip, to say that she had been denied the chance to "... stand at my mother's grave and say goodbye". This prompt caused Mary Frye to write the verse there and then on a piece of paper torn from a brown paper shopping bag, on her kitchen table, while her distressed friend was upstairs. Mary Frye said the poem simply 'came to her'.

Mary Frye didn’t set out to be a world famous poet, she was a kind friend, a good listener, and created words that resonated through time.  Being orphaned, her path in life was not an easy one, but she persevered.  She did not require high praise for her accomplishment she was her accomplishment – and must have had a strong sense of self and self worth to let her words be used so freely. 

This was the whisper; this was the message, not the poem itself, but the remarkable tale of its author.  How one poem, scribbled on a paper bag, gained power and momentum not because of author, almost in spite of her. 

Our grandpa, Robert Joseph Kelly, was a beautiful author of his own story, like Mary Frye his simplicity defined his complexity.  A soul with a powerful and steady message that so freely rippled through all of us.

Do Not Stand at My Grave and Weep - Mary Frye

Do not stand at my grave and weep;

I am not there. I do not sleep.

I am a thousand winds that blow.

I am the diamond glints on snow.

I am the sunlight on ripened grain.

I am the gentle autumn rain.

When you awaken in the morning's hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry;

I am not there. I did not die.

USO

hmm - not much to update - been dealing with the back pain - it is slowly improving - which I am extremely grateful.  Still in pain, but its all encompassing grip has begun to lessen.  After finishing Unbroken, realized that I have not done really anything besides listen to my late grandfather's stories of the war.

The following link is any easy way to get involved, and its as simple as writing an email letter - the form is all there.  What this illness has always reminded me is that sometimes you can't make anything better, but knowing you are not alone is a powerful dose of medicine.  So that's my advice, if you have a friend, family member, neighbor that you don't know "what" to do - you really don't have to Do anything - a kind word goes the longest of ways...

So I took my own advice, and sent one of the letters to one of our soldiers - this current war we are fighting, and its ill advised beginning I think made me lose sight that those military personal they carry out orders, and they need to know that they are not alone, even when so many disagreed with the mission.  To my cousin Dana who has taken the time at her work to organize care packages to be sent out to soldiers, I am really proud of you - and your quiet acts of volunteering that you have always done.

So, here is the link, its easy to send kind words...
Letter

Just when...

I believe in serendipity.  And the day after I finished reading Unbroken, I was in my kitchen - so fatigued but thought I would feel more accomplished if I emptied the dishwasher.  So as I was in a bent position and twisted to grab a handful of silverware and standing up to reach to put them away I sneezed violently.  That one sneeze put me to my knees.   I wrenched my back I screamed for help because I could not get up off the floor.  Just when you think it can't get worse...which has always been my fear with this illness, it does not give you a free pass to avoid other pit falls in life...and since Monday I have knew found compassion and understanding of pain.  I did finish Unbroken, and I thought again, how powerful the timing of  finishing a book that i described as just when you think it can't get worse it does, now here i was living out my own fear - things getting worse.  I have had occasional back pain, a somatic visceral response to the swelling in my abdomen, that my body is internally irritated and my nerves react and for a few days I "walk" around with an S shaped curve - but I know what it is and normally how long it will take to go away.  It also is very uncomfortable - a far cry from this pain.

The thing is I have always been conscious and extremely grateful that I do not suffer from pain.  After watching my mom suffer unbearably with severe shingles, and feeling so helpless to do anything - I have seen what pain does to people and how inadequate our medicines for nerve pain currently are.  This pain brought me to my knees, I could not stand up on my own and the fear that raced through my mind wondering if I had done something permanent was overwhelming.  I got into my Atlas Chiropractor -whom again I feel blessed to have known for 13 years, and will NOT let anyone else touch my me - but that night I was brutally awoken drenched in sweat, burning up, nauseous, spontaneous diarrhea and could not help myself out of bed into the bathroom - My brain could not process this level of pain and I screamed for my boyfriend to either call my doctor in Phoenix or call 911.  After a bit of arguing - he called my doctor in Phoenix, and again, feeling like angels walk among us she calmly talked me out of my panic, with a combination of Advil that I had on hand and homeopathics after 45 minutes I could begin to breathe again.  This past week has included a trip everyday to Dr. Mike at Atlas, and again, his compassion also led me to tears - but to be quite honest almost anything could get me crying this past week.  He re-took the x-rays of my head on Tuesday, changed the adjustment and slowly I have gotten out of the ravages of acute pain and can begin to know that I am lucky - this is temporary and I will get better.

All this week, the one person that kept running through my head was Louis Zamperini - how did he and his fellow prisoners of war do it...how did they get through unbearable pain without the compassion of others - without medicine, without ice packs, without a bed or a meal...how - how - how and it forced me to look even deeper into myself and wonder - what makes us?  Certainly not our circumstances, but how we choose to deal with them...and sometimes its not pretty.  I did something I never do...I sent out one of those Facebook messages saying, hey if you are out there and can send some healing thoughts my way - I will take it - I don't care if you pray to God, Allah, Buddha, Pixies or Fairies, the Sun or the Moon and you know what it helped - it didn't take the pain away, but to those that reached out when the pain got so I could not take it for one more second, I took a deep breathe and I thought of those that reached out in kindness and it gave me peace.  I no longer felt so alone.  I have thought in the past I have reached rock bottom, and I don't doubt there could be a trap door beneath me in the next 50 years if I am that lucky to live that long of a life..but at this moment in time this was my rock bottom - this Pain erupted inside of me an emotional breaking point that I have pushed so far down smoldering under the surface, and this pain was its match, unleashing a turmoil of despair I had hidden from myself.

I cried the ugliest of cries while my mom just sat and held my hand..I cried because I just couldn't take it anymore, and what I couldn't take most is another loss of freedom and the feeling that I have become nothing more than someone that needs taking care of - I cried for everything that I feel I have lost over the last 7 years - to look at my life and think really - is this where I am at...I cried for everything and everyone that I have every loved and lost, every dream that a wish didn't come true but at the end of those tears - what this pain gave me that chronic fatigue seems determined to hold out of reach I was given improvement.  I remembered what it felt like to be beaten down, break down and slowly fight back - follow instructions, take care when care was given and I was given the gift to feel what it feels like to get recover.  I'm not out of the woods yet, but I can walk without grabbing walls, I can sit for more than 20 minutes, I can feel the weight of pain slowly lifting.

I was taken back to Julie's blog (the Pain) when she gives her pain its own name in capitol letters, and she must decide that its time to let go of the Pain - and the ache in my heart, knowing that when I had said I was "hanging by a thread" and someone gave me the wonderful advice to "let go" that in letting go I could still be here - and when Julie let go she had to leave - that ache, that she had Pain that would not give her peace, well - there are no words, so I will not try.

this Pain scared me -dealing with a chronic illness its my huge worry of what else may come my way, and what would I do.. it leaves you feeling less equipped to deal with something that crosses your path ...- but for all that Chronic Fatigue has broken down, somewhere in the depths of me this pain and the gratitude I have that it will pass has given me unexpected strength.  I was able to look in the mirror and realize that I am a fighter, and I can dig deep and I can also surrender and say I have had enough -

What pain has taught me is that in the end its all up to you.  I depend on a lot of people, and much of that is a necessity, but I am acutely aware that how I learn to cope with this illness is my fight alone.  The other night as I was overwhelmed with pain I grabbed a note from my little block notepad that Addison gave me for my birthday.  It has purple butterflies on it and the words live, laugh and dream.  Without thinking I ripped off the top page and wrote three things...the top PROMISES...1. Innocent Project  2.Blog/Write  3. LIVE underlined three times..and I realized in that moment I had chosen hope.
 
I knew I would be okay - because like the dreams made on a life boat in the middle of the pacific ocean, where hope should have been a mirage - it doesn't live in the certain it lives in the belief of the possible.   I am still fighting out of this despair, as I am now standing to write since I can't sit - I am still fighting out of the darkness - but for once I am not beating myself down that the darkness exists -I am allowing space for the sadness, space for the regrets, space for the despair - and its sitting right next to hope and dreams.

Unbroken...

Against my better judgement I decided to begin reading Laura Hillenbrand's praised book Unbroken.  A little background, Ms. Hillenbrand, for lack of a better term, become the poster girl for chronic fatigue and all its umbrella of naming conditions.  Its the, "look if the award winning author of Seabiscuit and now Unbroken says she's sick...then guess what folks, she's sick and so are we.  Therefore, based on the kindred spirit thing, I wanted to support such author, despite the nature of the book.  Its the story of Louis Zamperini, an Olympic athlete of meager means whom survives with his pilot on a raft in the Pacific Ocean for 47 days, and just when you think that has to be the worst of it - honestly, what could be more difficult than lying in the pacific ocean with no provisions, surrounded by sharks, after being in a plane crash drifting 2,000 miles - well just wait - that was the easy part. Honestly, just when you think nothing could get worse, it does again and again and again.  And its not only Louie's story, its the stories of all around him, and while riveted and my eyes blurry from not putting it down, I had to stop and I am not sure if I can pick it up again.  I googled all the main characters, seeing what happens in the end..and then I went to bed and woke drenched in sweat unable to snap out of awful nightmares.  I lived with this story for half of a day - I have no idea how Laura Hillenbrand lived with it for seven years.  It may have left Louis eventually unbroken but i felt as if i was falling to pieces.

I have heard Ms. Hillenbrand in interviews talk about how she is inspired by those that persevere through something and that is what she is drawn to for writing, where I try and avoid the sufferings of others because I just can't bare it - and it consumes me - while I was reading Louis talks about the humiliation and breaking of one's spirit that was done in the "POW" camps in Japan, I use quotes because they did not follow any international law regarding prisoner's of war.  And there is a line, when he speaks that with out hope that is truly when you have nothing.  Even on the raft, they found ways to keep their mind sharp and plan for their futures, knowing with out such goals they would have nothing.  This thought of course resonated with me, for the past few days, I am sure the emotional toll of my grandpa passing has contributed but I have felt such a prisoner to this illness and the control it seems to take over oneself.  You no longer feel as if you are steering the ship, rather someone or something is pulling at you like the puppet strings and you are merely the marionette - That was what my nightmare was about, this illness with its bumpy unexpected unpredictable nature was my captor and I could not escape - whatever I tried that worked one day -failed the next.  I was starving because the only food that was being offered was food I could not eat.  I was trying to get medicines and they were being denied - but the overall aura was this manic  person was manipulating it all and I could never win.

When I awoke, it was 3 am - and I had to get out of bed, I was starving but couldn't bear to eat feeling too nauseous.  So I just sipped diluted orange juice.  Every time I put my head back on the pillow and would drift off I was back in my own POW camp, being manipulated - So I got up again, tried to slow my rapid breathes, grabbed my iPod and with one ear bud in tried to focus on anything else.  At first I was angry at myself for beginning the book, because I know myself, and too much sadness envelopes me - I heard on the Golf channel not a week or so back Feherty talking to Donald Trump, and he talked about his own depression and explained it to Trump as if his immune system was depleted for taking in any sadness - thus anything he saw on tv, the news, all these stories became his own narrative and he was helpless to fight them off.

However, as 3am moved closer to 5am, I was grateful - and I realized that for years I have been fighting of how to mentally handle the constraints of my health problems, and reading Louis's story I realized, its finding little bits of control   Little victories - not winning the war, just wining the moment.  

And this morning I had a blueberry.  This does not sound liberating to most, but I had been not been able to tolerate any fruits without an allergic reaction, and for some reason this morning I decided to try just one - again, small victories - and it tasted so good.  Fifteen minutes later I wasn't packing benadryl - so I will wait a few days and try one again.  I am hoping this is a sign my body is stronger, that everything around me doesn't feel like a land mind - 

And as far as Louis Zamperini - the poster man for enduring what is unbearable, for those he represents I honor you, I am humbled by you and I am blessed to walk among you.