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 -

Looks good on paper...

This was my "resume" before chronic fatigue...graduated with honors from high school, headed to University of Colorado at Boulder, where I volunteered with a second grade classroom and got schooled in chess.  Then left CU mid first semester sophomore year when I had chronic strep and came home to getting my tonsils out at age 19.  Then, I took a semester off of college to recover from surgery where I was the go to responsible house / baby sitter for extended stay get aways for parents.  Headed to UW-Milwaukee majored in African American Studies and Psychology, worked a part time job and volunteered for a variety of causes.  I graduated on time due to taking summer school classes, immediately worked for the service organization Public Allies as an Economic Development Coordinator in one of the most deprived areas in the city.  I was awarded a "Proclamation" by the Mayor of Milwaukee for a day in my Honor for the work I did at Midtown Neighborhood Association.  I can't remember what day it was...perhaps July 15th...but my friend Brian always teases me about it.   Then I worked for a good friend at her furniture business.  However my time at Midtown stayed with me and I became interested in the connection that our environment played on our health after watching a deprived economic area be plagued with preventable illnesses.  I took my first step by going to Massage Therapy school, opened my own business,  and used that anatomy lesson to go back to school and take pre-med prerequisites.   All the while I had an insanely active social and volunteer life.  I traveled all across the country to visit friends, was in too many weddings to count, drank, laughed had break ups and break downs but all in all life was fantastic.

And that is just an outline...well this is the thing about Chronic Fatigue it takes your stellar resume and everything you identified yourself with and turns it upside down and inside out so fast you wonder where the hell you went.  So here is my current resume for the cynics or those that don't know me...40 year old who lived with her boyfriend for 11 years, never married and just figured out perhaps it wasn't working... She lives in this home that was completely renovated.  I heard her dad bank rolled it, along with her country club membership and condo in Phoenix.  She never goes out to dinner anymore...something about some food allergies (sarcasm) hasn't worked in years yet carries great purses and jewelry.  Panic attacks at times so bad she can't get even drive to Madison - I even heard she had one so bad that a plane had to go back from the runway and escort her out.  What a drama queen.   She needed to walk up 14 flights of stairs to see her new niece since she is so claustrophobic but I thought she has chronic fatigue - how could she do the stairs then...travels half the year for some "treatments" but when I see her she looks perfectly fine.  Went to "medical school" but never even practiced...and she is crazy high maintenance. Sign me up!

While at Southwest College of Naturopathic Medicine, the professor for my medical ethics course walked in the door and before introducing himself said to our class, "my mother has been married 5 times..." He then he paused and waited for all of us to come to our various conclusions about a woman who had been married five times...and we all did.  The things is we all probably had different conclusions none of which were correct, perhaps if you pooled our collective judgement we would somewhere along the line come up with the truth.  Lady justice, not always blind.

This is what a chronic illness that leaves no marks gives you - compassion.  That old saying that you have heard since the second you were in pre-school - don't judge a book by its cover - well I don't.  I don't always succeed, but knowing how I "look" on the outside and "feel" on the inside, it allows you that delay in judgement because you know what it feels like for others to not have a clue.  Chronic fatigue forces you to get out of the habit of defining yourself by what you do and that is a difficult pill to swallow.  There are times I reminisce about that old resume and think...wow wonder what she would be doing now; if not for being this "girl interrupted."  Then you snap out of it and force yourself to stop living by the definition of what you do or did and focus on who you are and what that means to those around you.  You pull it together and even though it feels like you are this completely different person and at times you have nothing to give, you know that is a lie.  You are still there, you just don't look as good on paper, but perhaps you are better.

Out of Comfort Zone

I am honestly overwhelmed with the outpouring of emails and support I have received in the last twelve hours.  For once, I am truly speechless.  This illness started with intense focus on all it has taken away and I have done everything in my power to try and see all that it has given.  Many days that has seemed impossible but days like today, when I took the leap of faith and doses of encouragement to come out of hiding in writing this blog...well days like today all I see is how blessed I am.  Don't be fooled, when I kick it to the curb there will be no greater feeling, but for now the gratitude that I have for all of you that have decided to join - well there are no words.  Just Thank You.

"Much like the Phoenix bird which rose from its own ashes, the Sprites of Midway Gardens were resurrected from their demise and given to the Arizona Biltmore Resort and Spa as gifts. Now called the Biltmore Sprites, the Sprites of Midway Gardens were in a sense the lost children of architect Frank Lloyd Wright and sculptor Alfonso Iannelli."

I was trying to find a picture to convey the feelings I had today and went through my phone and chose this one of the Sprites at the Arizona Biltmore.  I had no idea why, but they seemed to convey the gratitude that I can't seem to express with words.  And I thought it odd, so I did a bit of research on them and found the following article...Rescued and Found their Way Home and how serendipitous; just like these Sprites, I have felt damaged, broken and often lost and at the same time watched over and rescued time and time again.  When I head back to Phoenix, and I walk through the Biltmore grounds and glance at these Sprites it will be with a new found sense of solidarity of our shared journey.  I will look at them and smile reminding myself that someone is looking out for us even when its hard to believe and they will help us find our way back home.