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.

Searching...

There's no place like home. 

There's no place like home. 

There's no place like home.

The past week I have struggled at my home with the feeling of being Home.  The disorder and missing pieces in my Wisconsin home are at times very off putting.  I would often like to click my heals together three times and be transported to a safe haven.  I know Home is much more than the walls that surround me and while I have lost a bit of balance in some ways, I have gained it in others.  Before I left for Phoenix and was in the tumultuous waves of my ending relationship two of my best friends each gave me some advice that I took to heart.

My Freshman Year of College - University of CO - Boulder

Immediately after our break-up I stayed at my good friend's house and I was struggling with being physically ill, emotionally spent and being in someone else's home.  My fabulous nurse Betty brought me everything I needed, but most of all advice.   She said, "remember when you first went away to college and you thought how am I going to do this...and everything was different, well that's where you are right now and it's just going to takes awhile to feel safe again."

Nice, France

My other friend spoke her her advice a bit more forcefully or perhaps it was more like an order..."it's time you find home within yourself again, whether you are sick or not."  And she was right, I couldn't remember the last time I felt at ease within myself no matter where I was, when I get ill I just want to get "home."  I want to travel again and find those far away places that when you arrive you swear you have been there before.  Those spots that the second you land you get a chill of familiarity.  The American actress Olivia de Havilland echoed my feeling when speaking of Paris, "you feel it belongs to you, that's what is so magical, that it's yours..."  That was exactly how I felt every time I landed in France, especially Nice.  The second I breathed in that salt air an instant calmness washed over me, it belonged to me.  I crave to live that type of adventurous life again, bringing home with me wherever I go and stumbling upon places that resonate a sense of belonging.

Searching for a safe haven, our home, is a universal quest.  There are times when you feel at home anywhere in the world and times when you are in your own home and couldn't feel more lost.  There may be no road map to guide you but when you find it you know and when you do grab ahold of it tightly and never ever let it go.  There truly is no place like home, sometimes its just takes getting off your current path to find it.

Two roads diverged in a yellow wood
And sorry I could not take them both...
Two roads diverged in a wood and I,
I took the one less traveled by
And that has made all the difference
Robert Frost

Free Willy

I took a mental hiatus from writing last week, not by choice but out of necessity to my sanity.  Normally writing is my sanity, however returning from Phoenix after treatments can feel like being re-introduced into the wild. It takes a bit to get my sea legs back after living a life of intense structure and focus to home with all the moving parts a normal life entails.  

And Home isn't what it was before I left.  I came back to half of a house; symbolic of the eleven year relationship that had ended the week and a half before I left for Phoenix.

Missing Pieces

As I explained to the son of my ex sometimes it's really hard to walk away when two people love each other but are not right for each other.  When you begin to realize that without reason or understanding you have begun to cause more harm than good in the name of staying together.  I can only speak for myself, but what I know is I learned a lot about myself and what I need and that I am stronger than I thought I was.  I do not regret the eleven years, on the contrary I feel blessed for where they brought me and I hope in time he can feel the same.  Dis-ease - its an interesting word,  I was uneasy for a long time and I didn't want to look in the mirror and admit to myself that my relationship was bringing more dis-ease to both of us than happiness.

Disorder

This illness brings you a big picture view of life that I realize can be hard for others to jump on board with at times.  It shows you even if you are not listening  what brings you strength and what weighs you down.  I have learned that my body has very little capacity or tolerance for holding on to ill will.   My anger or disappointment of what went wrong is not buried deep nor being ignored.  Only the two of us know the intricacies that brought us apart, but I prefer to look at it as we completed our journey and can leave with no regrets.  I wish for him the same as myself a joyful life that I can bear witness to from near or far and that our time together was time well spent.

Will be packing again soon...not even worth a trip to the basement

As "they" say with every ending is a new beginning...the first of which is my new niece, Taylor Rose born just on time before her aunt headed to the airport on November 2nd.  Mom and baby are doing well and her siblings are adjusting to the new addition.  There are many changes on the horizon, but one thing is my constant...the bedroom may look different, my favorite comforter may be gone, but my dear baby is still right by my side.

Heading home..

Today is my last appointment after four weeks of treatments.  If you would have asked me a year ago if I could have stayed in Phoenix by myself while dealing with this I would have looked at you like you lost your mind...but I did it.  I had immense help from my family, providing me with a gorgeous condo here, my friends taking me to appointments, making me breakfast - lunch and sometimes dinner, my friends at home supporting me via text or calls, Kristine who is the most efficient and kind "helper" you could ask for - and of course my doctor.

I woke up this morning and for once didn't have immense anxiety about flying and this will be the first time in four years that I have traveled alone.  I feel stronger and happier than I can remember, and I am only anxious about what will come when I return to the cold climate.  One day at a time my friend, one day at a time.

That above is courtesy of Kristine's immense organizational skills....

www.sandrapriebe.com

When I woke up this morning I checked Facebook to see my friend Sandy's amazing sunrise photos that she has been doing for almost a year....this was sunrise over Lake Michigan this morning, not a bad place to go home to.  

Stillness

There is a stillness in the desert that I have never been comfortable with until now.  One of the first things I noticed when I moved here from Wisconsin was the lack of wind.  I remember the first time Sophie and I had moved back and a burst of wind hit her and she looked at me as if to say,  "what the heck was that..."  This lack of movement of air has always made me uneasy.  The desert landscape itself I could not see the beauty; the landscape and I had nothing in common.  It was still and I was not.

I want to be clear to those that are reading that living with Chronic Fatigue in it's chronic state does not have this peaceful stillness that corresponds with that easy going name - it is a body in chaos with no plan of action to follow.  However, the treatments I am getting are very different from mainstream medicine and they move this illness from the chronic to an acute state.  The end goal being your body wakes up and begins to act alive again.  This trip, in between the low grade fever, chills, exhaustion and detoxing reactions I have found this sense of calm that I have not experienced in a very very long time, if ever.

I have practiced meditation and yoga on and off throughout my life and it has served me as well as it could.  It is always immensely frustrating to hear people tell you to mind over matter this illness, they haven't a clue, and those of us that do just give that knowing smile.  This intense treatment protocol I am on flips this illness upside down and begins to shift one's body towards a different path.  This new "path is not paved, but is made of cobblestone some of it thousands of years old and its destination is still traveled on"tks with hopes of new beginnings.

This stillness is as unconscious as the chaos.  I feel it deep in my bones,  it's a stillness my body would not give me no matter how hard my mind would try.  I don't know how long this will last and I can only hope that my cells and immune system have gotten the memo that its time to step up to the plate and carry this home.  But for now, all I do is appreciate the quiet when it comes; because if it is coming once there is no reason it won't come again and stick around for awhile.

Hope is a waking dream...Aristotle

Our bodies are a complete mystery on many levels and sometimes the slightest push can have this amazing cascade of events to your advantage or disadvantage.  I can only hope that the door has opened for me and it's my turn to get to the other side of this journey stronger and more compassionate then when it began.  I see hope, I feel hope and if tomorrow comes and knocks me to the ground I will get back up again...isn't that what we all do...we just keep getting up again and again.

Wonder Woman

Some weeks you just need to channel your inner wonder woman.  When I was younger I had my ritual of getting transformed from a mild mannered six year old to the fabulous Wonder Woman.  I would put on my mom's opaque beige nylons that reached up to my armpits, my light blue swimsuit that had yellow and pink horizontal stripes - which actually looked nothing like her costume - and of course the tin foil bracelets.

I have known many Wonder Women throughout my life and am thankful for them all.  Sometimes all it takes is a few extra bracelets and you are on your way.

Adult version of Tin Foil

Even Linda Carter hasn't given up on the power held in one's wrist....

Here's to the final push - Week 4 before heading home for a break....and a new niece or nephew... I hope you wait until I get there; however my sister swimming in pre-birth hormonal hell hopes you would have arrived yesterday so either way is fine by me.