Garden poem

Today, in the Garden
we were holding hands
I turned to you and said, "I love you"
as I have hundreds of times
but today
it was different
tears emerged from my eyes, at the tenderness of it.
You paused as if drinking in my words.
This pausing to accept my love as precious as your words,
" I love you , too."
and knowing in my heart
that it is true.

Crickets

The crickets came back tonight,
singing their song of summer
their song reminds me of summer as a child. 
catching fireflys in a jar
cooking hot dogs over a campfire
smores and card games,
My Mom laughing,
skinned up knees from doing tricks on my bike, but not so well,
orange push-up ice cream from the corner store
My sister everyday guiding me on my path with gentleness and kindness.
Tonight, as the crickets return with thier song of summer,
I am grateful for my sister
grateful  for her lifetime of caring for me,

as sure as the crickets song in summer.

The long term Cost

So, each day I feel grateful for remission.  I looked back in my journals to see when, exactly, this occurred and how I felt at the time, so I could share it with you.  It was January 15th, 2008 when Dr Oyesiku first said it was so.  I had radiation in June of 2007.  When I saw Dr Oyesiku on that day in January, I was afraid he would say the Cushing's was still there because I wasn't really feeling any better, still so fatigued and weak and not well by my standards (or anybody else's).  Still requiring a lot of help for daily living like food preparation and grocery shopping, driving, etc..  Dr O was so pleased that this remission happened so quickly, usually it takes at least 13 months.  My level of cortisol very low at that point and they would consider replacement if that continued and that would make me more "functional"---that is the word he used.  It was somehow reassuring to hear him say, that I wasn't functional...like that wasn't expected of me.  It isn't because I'm lazy and like to sleep or something but that anyone who has had their head drilled on a couple of times and this particular radiation and disease course is not expected to be "functional".  It helped me to be a little more compassionate with myself.  I told him about my memory and cognition.  I had to write it down in order to remember to tell him.  I was very worried that it would continue to worsen as the radiation continued to "rot the tumor and my brain".  He said, that it wasn't caused by the radiation but the long term effects of extremely high levels of cortisol on my brain.  There is actually shrinking of the brain, like when we age.  It is not reversible but it will likely not worsen.  Sad.  Very Sad.  I can't stop crying because I will now always be this way, Stupid, Useless, Really sad.  The sudden realization that "well" to the Doctors isn't "well" to me.  We have different definitions.  My definition is that I would somehow magically be who I was, a whole person able to contribute to the world in a meaningful way.  The  Doctors definition of being well is... breathing.  Simple. True somehow.  but not what I was going for.  Remission is good.  I'll adjust to the cost.  I'm still glad I'm here.

Gratitude

Journal entry 12/28/2007

It's raining so beautifully complete with thunder and lightning.  We are in the midst of a severe drought and now it has been raining for maybe 5 days straight.  Everyone is grateful!  No one is complaining of the inconvenience of the rain--all we hear is gratitude for what we need so much for life.  Isn't is like that--- We are only grateful when something has been missing like...rain or sunshine, or love, or food or the ability to read.  We forget to be grateful.  We forget to be Grateful for what is given so freely everyday.  We forget to be Grateful for what is necessary for life.  God, help me to remember to be grateful, every moment, for your "everyday" gifts. 

Experience your life

Pema Chodron, a Buddhist nun, from the United States, has written many books about Buddhism from this Western mind perspective.  She explains the ideas in a way that even I can understand, in stories. A favorite story she tells is about a woman who was being chased by tigers and is hanging from a cliff.  There are tigers above the cliff waiting to devour her and now there are tigers below the cliff circling and waiting to devour her.  Suddenly, she sees a strawberry on a plant within her reach.  It is beautiful and perfectly ripe.  The woman with tigers above and tigers below, picks the strawberry and thoroughly enjoys it.  Enjoy this moment! 

Homage to my Hips

Homage to my Hips

Lucille Clifton

These hips are big hips

they need space to

move around in,

they don't fit into little

petty places, these hips

are free hips.

they don't like to be held back.

these hips have never been enslaved,

they go where they want to go

they do what they want to do,

these hips are mighty hips,

these hips are magic hips,

I have known them

to put a spell on a man and

spin him like a top!

weight watchers

Remission STILL !!!

This is going to be my "Before" picture.  I'm happy and healthier than I have been in awhile.  I like the picture.  We will look again in September, when I go back to the endocrinologist. ( It's me holding the baby)

This is fabulous, of course, I am so grateful to feel this good and to still be here on the planet, etc...  Dear God,  Mucho Gracias!  I decided to celebrate this gift I should continue to improve my health and my body as a way of honoring the gift!  In 2003, when I went to my primary care provider with my symptoms, I had gained 50 # in a year, despite converting to be a vegetarian and exercising as much as possible.  I was also depressed, and sweating everywhere, no deodorant worked, crazy fatigue...I felt like I had been up for 4 days on call, no matter how much I slept, I hurt, I cried, I was growing a beard and had bumps everywhere on my skin, a growing buffalo hump that I could feel like an extra tire on my neck.  So... now after all this time, I still have that initial 50# and I want to lose it.  There are other irreparable damages from the Cushing's journey that will be with me for always but perhaps the weight I could let go of now.  As my pituitary function continues to decrease due to the radiation, my thyroid has finally given up trying to work.  My endocrinologist just increased my thyroid replacement medications and I lost 10# in the first 10 days with no effort on my part!  I'm still eating well as before but now the weight is leaving me.  This gives me the hope I need to work on it.  My endocrinologist said that Weight Watchers is one of the Best Plans for me.  Heart Healthy, Balanced, Nutritious, all those things I have to be careful of because of Hypertension, Heart disease, Diabetes, Cholesterol...all those things that Cushings left me with are considered.  So I signed up and I started to cry when I got on the scale, not because I was sad or surprised, because I have been at this weight a long time now (2003) but rather because I was elated to be right here now.  Beginning Again.  Beginning to be the New Me without so much of the "Cushing's Load".  So pray for me folks and I'll keep you posted on how it is going.  I'm doing more yoga and walking everyday.  Striving for the best me I can be.

wisdom words

"Be tough in the way a blade of grass is:  rooted, willing to lean, and at peace with what is around it."

Natalie Goldberg

bowls and emptiness

I love bowls

ceramic bowls, wooden bowls,

laps and pregnant bellies

round things that hold stuff,

I love all that.

the bowl of my heart is

empty of love,

empty of hope,

but full of fear

so difficult to hold anything.

"Today, just like every other day I wake empty and frightened."  Rumi

I'm empty again. Here is that familiar place of hollowness--and yet unable to hold anything.  I long to make myself a vessel to hold something useful, some love, some warmth, some guidance.



Acoma seed jar



I'm empty and round and circling the bottom of this hole of despair. Somehow, it seems familiar and somewhat comforting this roundness and a sensation of being held even though I'm all alone in this place.  I'm still connected to the universe, to Divine, even in this place.  I think I will make some bowls today--something big and write a welcoming inside for my soul to slide into or maybe I'll make some tiny pinch pots that almost close at the top, like a seed jar, to keep my soul safe within.  This giving up my life is hard.  I know something better will come.  I must Trust and be open.  Empty and Frightened---Move away fear--Move---I want my soul in all it's brightness to fill this bowl. 

when I knew the Cushing's was back

I'm going through my journals and I come upon this entry that I felt obligated to share because it illustrates, how you know when the Cushing's is back, even before the labs say that it is true.  For months, the endocrinologists were saying I was still in remission( and this was true of course according to labs) but I knew differently.  My skin was bad, I was so tired, and the sweating , memory problems, etc..

June 8th, 2006
I went to see my primary care Doctor today and my blood pressure was even higher, I had gained more weight, the fatigue, the pain, the sweating, the bumps, the weird hair growth...all here...I told her about all this very calmly.  My Doctor who first saw me in 2003 when I presented with similar symptoms, My Doctor who I trust, and know, and love.  She calmly examines me and then when I lay down and pull up my shirt for her to look at my growing belly and there are the bumps on my belly and bumps on my arms.  With tears in her eyes she says, "Jamie, It is just like when you first came to me...I'm so sorry."  She didn't need labs to tell me what I needed to hear.  I needed her to say it to me...to confirm my fear, no, to share my fears.  Jamie the person, needed Alacia, the person, to say it first.  I didn't want to hear it from some endocrinologist who doesn't know me or care about me.  This Doctor had really walked the path with me before.  I'm scared now--no labs, no nothing just tears in my doctors eyes, and this was enough.

parenthood quote

"Their hearts were wrung with anguish, the anguish of having children, a vulnerability as astonishing as the capacity for love that parenthood brings..."
Middlesex by Jeffery Eugenides

Being a Mom or Dad  is astonishing.  Be worthy of the Gift.

suddenly motherless at 11 years old

I wrote this when my daughter was 11 and one of her classmates lost her mother instantly in a car accident.  At the time, I had been sick since My daughter was 8 years old and often times wondered if my presence on the planet was beneficial for her or not.  I worked as much as possible and then slept a lot.  My bedtime was before my child's, and I was hurting all the time, and therefore kind of grouchy.  She would say, Mom it is like it is Friday everyday (which meant I was always tired and grouchy).  We played board games in my bed or read to each other.  She did her homework there and often we ate in bed with the dogs piled up there with us.  Kids are so resilent. and she loved me so well through it all.  OK the poem.

Suddenly Motherless at Eleven 

OH young woman, not quite...

Who will teach you to eat well

and to love yourself?

Who will guide you through menarche

and the fights with your girlfriends?

What about that first love

and the first heartbreak?

Wear your seatbelt and brush your teeth.

And love yourself as your Mother

would if she were here.

Mother Love is BIG

and gentle

and never ceasing.

I'm sorry your Mother won't be here

when you hold your daughter for the first time

when you can know in your own heart

the fierceness of a Mother's love. 

clay thoughts

sculpture by Adrian Arleo

Why I do clay?
When I play in clay I feel so intensely alive and connected to myself in the present and I also feel connected to my ancestors who certainly also loved the clay and felt this calling to create.  It doesn't have to be worthy of keeping.  Just the act of creating releases the mind and the hands together.  (I wish I could create like this artist from New Mexico...but it isn't required for the spiritual release).  It is a bit like not having boundaries, this living in the moment and sometimes I honestly feel a little guilty for taking the time to do this clay work that I am probably going to squish.  Maybe, I should instead do laundry or something "useful".   Handbuilding is kind of a barometer for how I am doing emotionally,  how am I in relationship to the world, to my people, to my parenting, to myself as I am now?  I can get it all out in the clay. The little rather primitive forms I make, is a way for me to connect with the Divine.( isn't this what people have been doing forever in clay connecting to Divine bringing Divine into everyday life.)  Physical representations of prayers for good crops, or no war, celebrations of family, or praise for the beauty in all things.  I love these prayers made with my hands, a gift from the earth, given back with a prayer infused.  I discover where my passion is---who I am today, what is important to me and how I relate to the world around me.  I discover texture and pleasing repetitive motions with carving clay or throwing.  My emotions written with my fingers, directly from my heart and out through my fingers is so much easier to translate than words especially when words don't come with ease.  The clay reminds me of what I ache for... that is connection to Divine, lustful loving of life every day.  this is how it should be.  I want meaning in my life and to make a life giving, sustaining contribution to the world.  I ache to have a purpose here, to make a difference today and tomorrow, that the world may be a better place because I breathe in and I breathe out.  May it be so.  OK, I gotta go make a baby deer or something sweet and small and precious to my heart.  My dear teacher of all things art, Melanie, I am so grateful for this gift of clay in my life.  Thank you for sharing with me and so many others.  Sending you much love and gratitude

Wild Geese by Mary Oliver

I adore this poem. you will see why.  Be here now is enough, is Best.  I love this sense of belonging here.   

Mary Oliver: Online Poems

---

Wild Geese 

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting--
over and over announcing your place
in the family of things.

© Mary Oliver. Online Source

Making Friends

A couple of weeks ago, when I was having one of those days where I feel despondent about it all. 
You know where you say in your head (over and over again)...
I hate being stupid,
I hate being fat,
I hate my stretch marks,
I hate how my nose runs when I eat,
I hate being so tired,
I hate missing my child's softball games because they are too late in the evening. (you get the idea)
then , I came up with a new one

I hate how I haven't made any new friends since 2005 at the latest.  OMG!!! I didn't even realize this until that moment.
This realization increased my despondent feelings.  Luckily, almost all my friends are therapists, so I got right on the phone to my BFF and she came over and through my sobbing and drippy nose...she told me I was worthy of friendship, I was loved and all the good things about me, now...just like I am.  It is hard to take in sometimes that the new me is worthy of friendship because I'm not even sure I like her all the time, how can I expect it of other people.  I guess in my sadness, I thought all my beautiful "old" friends were just loving me for who I was before, "pity love" or something.  That is so ridiculous, I realize.  They are genuinely beautiful people who can see beyond all the above mentioned faults of mine.  If you are reading this, know that I cherish your friendship, appreciate your steadfastness through it all, I love you, so, so, so.

Why haven't I made any new friends?
Well, I'm quiet and reserved for fear I will say something stupid.  I also get easily distracted when there are more people, like in restaurants, or in yoga.  If I'm tired I get more anxious, and I might start to cry.  My "old friends" are used to this and are patient with me to get my thoughts together or just wait while I have my little tears, and the anxiety passes.  How can I have a new friend without requiring them to have a little "Jamie's oddities" course as a prerequisite?  I'm not sure yet, but I'm working on it.  The other day, I had lunch with a new potential friend and I was so anxious because there were people everywhere and I was having trouble focusing.  It was nice to try to be normal and she was so kind and gracious, and I didn't cry.  She walked me to the parking lot and I realized that I wasn't sure my car was there. I started to freak out because if I couldn't find my car I knew I would cry and how embarrassing.  When I step away from it, I think other people also can't remember where they parked their car,  it is probably not about me being "less than" others.   I just want to be able to be comfortable in my own skin again.  I think if I can manage that, new friends will happen without all the effort and fear.  If I can be less anxious then people will see that I'm funny and a good listener, and have a good heart.  I want to be seen for exactly who I am and loved.  It is what we all want.  I want to be that kind of friend, too.  I'm wishing that for you and for me.



"Friend, our closeness is this:
any where you put your foot,
feel me in the firmness under you."
Rumi



Assessing remission in Cushing's Disease UCLA

Here is a case study done at UCLA of a Cushing's Disease patient and how remission is determined.  I found it interesting.  It does show some surgical stuff, so not for the squeamish.  http://neurosurgery.ucla.edu/body.cfm?id=1103

here's wishing everyone remission forever! 

you can find a lot of other information here also.

Notes on Transitions

Transitions,,, When I hear the word, I can feel my shoulders rise up to try to eat my head!  Anxiety!

I went to a workshop on transitions several years ago and I'm going to give you some of my notes and thoughts from that workshop.  This was after my first surgery and before my second one, when I was just starting to grasp, that my life, as I knew it, was ending with no idea how this was going to turn out.

"Not in his goals, but in his transitions, man is great."   Ralph Waldo Emerson

"Whatever the present moment contains, accept it as if you had chosen it.  Always work with, not against it.  Make it your friend and ally, not your enemy.  This will miraculously transform your whole life."  Ekhart Tolle

"What we call the beginning is often the end, and to make an end is to make a beginning.  The end is where we start from."  T.S. Eliot

4 Basic Principles

1) accept what is--this means to be present in the moment without resistance.  This is the foundation of taking effective action.  For me, taking effective action is key.  Sometimes, I just want to take action, just let me do something to improve my out come!  When you have acceptance, then you can RESPOND appropriately to what is happening rather than REACT.  Acceptance doesn't mean resignation.  Be here now.
Jamie's experience...Accepting that this is now my life, as a disabled person has been most difficult.  My usual method to my life is to push through and get what I want.  It had always worked before, careful planning and hard work would always result in the desired destination.  Not so with this illness.  I must move from all this regret of how my life isn't ideal and away from the fear about what is to come towards acceptance.  Live in the present Moment!

2) trust and let go-- every experience has a mind and a body experience.  The mind experience is images and what we tell ourselves.  The body is our sense perceptions, how does it smell, taste , feel, what does it sound like.  also our inner perceptions such as heart pounding, sweating, how is the breathing.  The body is also our emotions as we experience them.  Be awake to the experience and let go.
Jamie's experience...I ask myself. 
What do I need to Trust in to make my way through this current transition?
Community Support
My own skill and strength
Divine Guidance
my body to tell me, what is
Letting go of the Known in order to Move to the Unknown.
What do I need to let go of:
my ego
My stubborn idea of who I am --nurse-midwife as Identity
Myself as Wise Woman Midwife, expert and have a willingness to be Novice again
let go of fear that I am not loveable because I can't contribute to the world in the same way.   
3) embrace the learning and the gifts --Ok, so the Gifts only come in hindsight.  It is difficult to see the "gifts" while you are in the thick of it.  Stop and think, what can I learn here?  This helps to put the transition in context of your life.  The "this sucks" mantra, I have found not to be very helpful.Jamie's experience...For me, I look at the worst case scenario...What will it cost me If I don't open up to this learning?  I could live a purposeless life from here on out.  I could continue my stubborn life of fear.  This is not very appealing so I must:
embrace the Feelings
Not live in Fear space
More heart and less mind (in many traditions, this is the desired effect of years of diligent training, meditation etc....so I have been given this short cut because my brain works less, my heart is the better place to operate from...this is actually a GIFT)
Gifts--1)I understand that people love my unconditionally, since I am unable to do something useful for them.
2) I can now ask for help occassionally.  I live a community supported life.
3)I have a more balanced life.  Before it was work and work only,everything else, including my daughter, was second.
4) I have time to be present with my daughter.  I have time to create with clay.  I have time to have good relationships with other people.

4) Look for the opening-- Look for the way, the portal to the Divine.  How do I make this transition?  Remember, you don't have to choose the "right path", you just knowing the next step is enough. 

Jamie's experience...  Ok, so the opening is that, I don't have a choice!  The fact is, I am unable to ever be who I was before the illness.  This is true for all of us, we are not who we were last year, but it is less noticeable if nothing has really changed.  So here it is, this fact that change has occurred and I can embrace it and discover each day, how I can live this day best.  How can I connect with Divine today and be of service to my world around me?  Now I must live from my heart place.  Now, I must remember to be flexable as things continue to change.  The me today or tomorrow can be more connected and more beautiful.  i'm here so I must have a Divine purpose.

Persistent Remission

Friday, I went to Emory Pituitary Center to see the endocrinologist for a review of my most recent labs.  Dr I says that I am still in remission!  Hooray!!! and the most amazing part is that I don't have to come back for 6 months!!!  This is unbelievable, not 6 weeks, not even 3 months, 6 months...half of a year!!!!  This little bit of freedom from these particular Drs suggests to me that I am finally stable.  Since 2003, I have been going to some Doctor every couple of weeks, some more than others.  Of course, I'll follow up with others between now and September but no trips to Emory.  A friend of mine sent me this blessing that is just lovely, and I wanted to bless you with it too.


I'd like to share a blessing; it's the final stanza of 'Beannacht,' a poem I love by John O'Donohue:

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.