Friday, June 8, 2012

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 did they get through unbearable pain without the compassion of others - without medicine, without ice packs, without a bed or a - 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.


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.

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