Pretty Little Liar

I try and put on my best face and best attitude and say that all that matters is that I have tried my best.  Perhaps I am just a pretty little liar, as the night moved on to night sweats, body aches, fatigue so bad it was hard to reach for water and an upset stomach the endless word chronic came crashing down.  The truth is, I have no idea what is in store, all I know is this time it all seems more difficult because I left someone behind.  This illness is filled with sacrifices and lessons and joy and misery.  Somedays you have it all in perspective and are the fighter and then there are times that you surrender to the grief.  You don't give up or stay in that place of sorrow for long, but to ignore it can do more harm than good.  You acknowledge it, and move on...tu me manqué.

www.sandrapriebe.com
Sunrise over Lake Michigan 

Treatment Time

I love words and I am trying a bit harder to use them less frequently and more effectively.  I have always loved to read, loved the smell of books, but most of all I love the phrases that stay with you long after the memories of the story fade.

I arrived in Phoenix last night and had my first blood treatment this afternoon.  When I came back  home I was overwhelmed.  The reality of my life and this illness back in full view.  My appetite was lost and behind my eyes a faint headache reminded me of the fact that getting well isn't always pretty.  Then I looked out onto the balcony and soaked in this sunset and all it conveyed was hope and I thought to myself,  if this is as good as I get, as healthy as I get, this will be enough because I tried.  If these treatments offer no more improvement than what I have already gained, I will find away for it to be enough.

And I will know that to the depths of me I have tried my best.  I have tried not only to find the most effective treatments but more importantly I have tried to be my best within the often collapsing walls around me.  It has been like fighting for extra mortar when everywhere you look a new leak has sprung in the crevices of your foundation  But you can not let yourself be submerged, you will not drown, you will not stop trying.

"We try.  All of us.  We Try." Richard Ford.  Those are the last words from his book Canada, which I have not read, but seems like I should.  The story doesn't really matter that much, the end tells you the beginning.

Safety and Security

There is a little truth in all of this...hoping just a little...

My mom had a brilliant idea when my sister was younger to "rotate" security blankets.  After being embarrassed by the rag that I carried around as a young child she thought that by having three that my sister bonded with she would always be carrying a crisp clean blanket.  The plan back-fired.  Instead my sister carried around three dirty dingy security blankets.  One of my friends from grade school - she was so attached to hers that I remember the Christmas card that if you look closely enough you can see behind the green velvet dress the one arm slightly behind her back and the ragged blanket just slightly in view.

I'm heading out to Phoenix again today, and yesterday I had a rough day.  I went completely out of my comfort zone and went to someone's home for dinner.  They were so generous in spirit, and didn't make a fuss when I decided it best to not eat at all and just enjoy the company.  I was forced to bring my security with me - it was rough going but I had a hand to hold and encouragement and love.

I stopped over to my sister's this morning and saw my neice's room.  She told my mom she is trying to stay in her bed all night long so she has every stuffed animal she can think of in her bed.  When my mom asked if it worked, she shrugged - no not really - well at least she is trying.

This time the tables have turned - because I am leaving someone that with my absence feels a little less safe.  And it's hard.  This is a first for me, realizing that my leaving affects someone that I love.  It's been hard to watch someone this morning try and be stoic and cheer me on and encourage me that this is what needs to be done, but it does not go without sacrifice.  I know that feeling that is how I use to feel leaving and instead leaving now is the window to my future.  I have a hard time being around others when they are upset.  I have to force myself to shield myself from their symptoms and not physically take them on myself, since that helps no one.  So we take it one moment at a time and I know he will do well, it is always being the one that is leaving and not left behind.  And we know this is the only way - this fight for my life back it has many casualties along the way.  It's just I wish I could give him some extra security while I am gone...seems as if my niece has a few guys to spare...but then again it didn't really work, but all we can do is try our best at any given moment in time.

Security and safety must be found on their own inside of oneself with a team around you to support your efforts.  It has taken me a long time to find my team and it has made all the difference.  Now it's time for me to help someone else find theirs.

When I use to have trouble flying, before take off I would imagine Georgia O'Keefe and her love of painting the view from an airplane...beauty, art, love, this where I try and find calmness when it's nowhere to be found.

Fearless

My writing "coach, mentor, cheerleader" has encouraged me to show more of myself...they need to see you understand you....it's a hard thing to do...where do you draw the line..how do you tell your story while not telling the stories of others...there is an art to it that i will slowly wade my feet in...but this is a fabulous post about just that by someone who took that leap of faith - courage -
This will take you to the blog...the post is called Eclipse.

Momestary

The Art of Happiness

It's the day after Thanksgiving and compared to last year I did really well.  It was also the first Holiday where the the only Grandparents at the table were my parents.  My niece got her first taste at eating at the big table and even had the small crystal glass to hold by the stem with her little pinky extended.

My parents made me a separate dinner, and it only bothered me after the fact to see the feast in front of me that I couldn't eat - the reminder when I got home of the frailty of the moment.  I had made chocolate chip muffins and in the "safety" of my home began eating it and the instant it touched my mouth my mind was confused because it tasted like a fruit.  I immediately popped a benadryl and thought I was making things up, and then later that evening it clicked...I had washed raspberries for a care package and I had dried them on a paper towel on the counter...somewhere along the way either when I made the muffin or I set it down it transferred the slight cross contamination...this is the frustration.

I'm fine a bit strung out from 2 Benadryl - and a bit congested still this morning - but overall fine.  The thing is this is the second time this week I have been less cautious.  For the first time in 7 years I missed my phone appointment with my doctor...completely slipped my mind.  She called me the next morning to answer a question I had and I asked why she didn't just call me and she replied..."I just figured you felt good."  She was right I did...the second the fact that I even decided to wash and prepare berries without a massive overly cautious dialogue in my head.  I didn't scrub the counter down - yes I got a minor reaction but in the big picture I have slowly stopped becoming so obsessed - that is hope.

You don't have to Buddhist to appreciate the Dahlai Llama - in fact that would just be a shame if you did.  I was reading The Art of Happiness from His Holiness the Dalai Lama and Howard C. Cutler, M.D. this morning, because to be quite honest yesterday I was extremely happy and sad at the exact same time.  Happy by how far I have come yet a deep buried sadness of all I have lost while being surrounded by all that I have gained, and realizing how far there is to go; not knowing if I will ever be released from all the confines this illness holds.  So I picked up this book figuring I could use some perspective and came across this paragraph and thought it related well to this blog of "hope".

Spoken from the perspective of Howard Cutler in the introduction to this book The Art of Happiness.  "By the end of our series of meetings I had given up on that idea (a set of easy instructions on how to conduct oneself for happiness)  I found his approach encompassed a much broader and more complex paradigm, incorporating all the nuance, richness, and complexity that life has to offer.  Gradually, however, I began to hear the single note he constantly sounded.  It is one of hope.  His hope is based on the belief that while attaining genuine and lasting happiness is not easy, it nevertheless can be done.  Underlying all the Dalai Lama's methods there is a set of basic beliefs that act as a substrate for all his actions: a belief in the fundamental gentleness and goodness of all human beings, a belief in the value of compassion, a belief in a policy of kindness, and a sense of commonality among all living creatures."

Hope - the possibility of attainment - acquiring that happiness despite of our circumstances.  Knowing we can only change so much, what matters is how we adapt to the changes we never saw coming.  Change as the saying goes...the only thing we can depend upon.  This illness is changing for me and I moved up my trip to Phoenix by a week because I can slowly feel the change, the subtle changes of a body regressing and I can change that - I can get on a plane and go find my hope.

JFK

As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them. - John Fitzgerald Kennedy

November 22, 1963

President Kennedy reaches out to the crowd gathered at the
Hotel Texas Parking Lot Rally in Fort Worth Texas

(Cecil Stoughton, White House / John F. Kennedy Library)

I have tried to stick to a schedule of posting Monday, Wednesday and Fridays...but it's Thanksgiving so I thought I would find a quote and a picture and let it speak for itself.  I don't know why but this quote from JFK was the one that spoke to me and then I searched for a photo to accompany it.  It wasn't until after I posted it that I saw the date well doesn't that speak for itself.  We have come a long way and have a long way to go... today not only am I thankful for my family and friends but grateful for strong leaders, advocates and ordinary people that do extraordinary acts.  Those among us whom dedicate their lives for peace and justice and the collective good of our nation and our big world that becomes a bit smaller every day.  We have many to admire past, present and future some from afar and others sitting next to us.

Have a blessed Thanksgiving today and carry it with you to tomorrow...

Abundance

In medical school the quick way to explain Diabetes was the phrase "dying in a sea of plenty." The irony of an illness that you have what you need, sugar, but it can't get to where it should be, inside of the cell.  Therefore all this sugar just hangs out in the blood just waiting for the magic bus, insulin, to transport it where it should be.  It's a scary thought to have what you need right in front of you but no matter what "you" do you can't reach it.  That is how the trip to the grocery store feels, staring at a sea of plenty.

I have been lucky that for the past 6 weeks I haven't stepped foot inside of a grocery store.  While in Phoenix I sat in the car when friends went in or the woman who helped me would go armed with my list.  While back in Wisconsin, I have had the woman who helps me here also to do that task.  I didn't realize that I was avoiding the grocery store, but after careful review, I was.  Therefore it took me by surprise when I made a quick trip the other day and I started to cry.  Not full out tears, but at the deli as I ordered some ham, I glanced at all the fruits and vegetables and all I saw was what I could not have.  As the deli guy asked if I wanted the ham sliced or shaved I could feel tears welling in my eyes and I willed those tears to defy gravity and head back to the safety of my tear duct. It was just overwhelming to look at all this gorgeous food, the abundance in front of me, yet so much of this beautiful nutritious food will cause me harm.  What does it take for a body to reject the most basic of nutrients?  That question is one that can bring me to my knees.

I pulled myself together as I walked past the potatoes, carrots and squashes.  I blinked hard as I moved towards the pears, apples, bananas and berries.  I just kept moving forward until I got to the floral department and took in the gorgeous arrangements.  I just stared at the beauty of them and willed myself to focus on something else.  I then mechanically repeated my mental list of gratitude:  I can afford the food I can eat, I do not have a terminal illness, I am getting better, this may pass, my family and friends are healthy, we didn't live through a hurricane, etc..etc..etc.. I repeat these mantras over and over but with my previous favorite Holiday Thanksgiving right around the bend which has now become the viewing table for all of my favorite foods that I can no longer touch - the tear and gravity won.

As I solemnly made it to the check out lane with absolutely no appetite I noticed in the aisle behind me a familiar face.  Someone I have known for a very long time but not known well.  However, she lit up a bit when I saw her, like she was seeing me for the first time because she had just read my blog.  To shield my teary eyes I joked that she had a Rotisserie chicken and commented that I forgot to even look thinking it later in the evening they would all be gone.  She laughed and said thank goodness they weren't because my family's dinner depended upon it.  We both checked out and she gave me a hug and said genuinely we need to get together and actually catch up.  And I turned back around and thought - I can eat a Rotisserie chicken and all of a sudden I just didn't feel that bad.

Acknowledgement  - it can bring you back from the abyss in a single glance.  So when I got home, I put together all the things I could eat with that Rotisserie chicken and had a shared camaraderie knowing someone else pulled together a quick meal with the same thing despite all the other choices in front of them.  All of a sudden it didn't taste like I had eaten this 100 times before, and I was grateful.

It's probably a good thing we grew up watching Charlie Brown fall flat on his back time and time again at Thanksgiving.   Perhaps that's the lesson of abundance - seeing what you can't have and appreciating the hope of getting it next year.  I heard Dolly Parton once say that once she "made" it she said to her large family you can have everything you need but not everything you want.  I certainly have everything I need.  I have love and family.  I have safety and security.  I have everything that really matters.  Therefore, when I get outside into the parking lot on a crisp fall day and am unloading my groceries by myself I am grateful.  I remind myself a year ago I couldn't have accomplished that task.  If I step back and get out of the confines of the display of abundance of food, I know that I have an abundant life in so many ways that others do not.  I am not lacking an abundant life - just mashed potatoes - and I can deal with that!

Seriously - Who can argue with Dolly -