Saturday, January 30, 2010

Right now -- seven days exactly

Right now is exactly seven days (to the hour) that Phil suffered his substantial stroke. It was about 9pm last Saturday night on a windy, icy, mountain road when the stroke struck. Sometime I'd like to share the whole story as I can feel my chest vibrate and tremor as I even begin to write about the trauma that ensued surrounding the stroke itself. I am working through this trauma and know I have made great strides considering it's only been seven days. I know writing about it will help me to release it as well -- more on this later.

Phil's latest update: he has been shifted to an acute rehab wing of the hospital. Starting Monday Phil will be in speech therapy, occupational therapy, and physical therapy for at least three hours per day. He has had small doses of therapy and does well but becomes utterly exhausted afterwards. From what I have learned this acute therapy is the most CRITICAL. How blessed we are that after such tragedy he is in a safe, healthy, clean center with attention and nourishment? I am acutely aware of the situation of Haiti -- where so many suffer right now and do not have these privileges. My heart aches for them.

The great mystery still lingers: How his recovery will unfold? Whether he will be able to speak clearly or read or write ever again? The baby in my belly? What next week might look like? Where we'll live after this? Mystery enshrouds every moment of every day. I know each of our lives are part of the great mystery but it is so easy to be fooled into thinking otherwise, it’s part of being human and having these big brains.

Phil will be in the acute rehab for at least 1-5 weeks and then life is completely unknown. Most of the damage has occurred in the left hemisphere of his brain -- in his speech and language center. He has a speech condition called: aphasia. Here is a link to learn more if you're interested:

He is unable to read, write, or speak in clear full sentences. It is unclear how much he comprehends but most likely quite a lot. This is such a frustrating situation for him now because he is unable to express through words. It is almost like learning English as a new language. We use many gestures now, we start broad with topics and slowly and try to hone in on a focus. When the gibberish flows out he either says -- "oh well" at the end or is starting to slip into quietness. We will all have to encourage him to try to speak, to keep the fluency alive, and encourage him to keep the articulation of words happening.

Yesterday afternoon he said the sweetest and saddest thing to me. He was lying in this hospital bed behind the sidebars and I was sitting on the chair beside him. He was very morose and sad yesterday and at one point said "hope we be together".

For the past two days I have really been pushing the hospital staff for "patio privileges", which essentially means taking him outside in a wheelchair. I won. There is a beautiful cactus garden with wheelchair paths, a small waterfall, and a beautiful sculpture of a shaman woman outside of the front door. Phil uttered the words oooh, wow, oooh many times while being wheeled around the garden in the desert sun. Watching the tiny hummingbirds and sparrows swoop through the saguaro, cholla, and prickly pear cactus was so profound for us. The sky filled with its colors and clouds and the chirping of the birds was a magical elixir for our wounds.

We have received so many loving, encouraging, and generous words, emails, thoughts, prayers, metta, music, and donations. I (we) are filled with deep deep deep gratitude. I can feel the waves of this power -- it is helping the trauma to subside. It is deeply powerful. I hope as Phil lies in his new hospital home this enters both his dreams and his waking life too.

I would like to share something a friend wrote to me a few days ago who has been touched by our story. I think it's beautiful and the sentiment has been a deep inspiration for me to keep plugging along. Honestly I have never felt the net of my family and community (and the universe) more than now -- perhaps this is my life teaching out of this tragedy?

" Hi Lara Belle,
... Through all of this, I haven't worried about you for one minute. You have more resilience than any other human being I think I have ever met - and a piece of your resilience lies in your ability to reach out to people who can help hold the weight of your fractured world. So many people either can't reach out or don't have anyone to reach out to. You and Phil are gardeners of the soul and of abundance and human spirit. I have been told my whole life that everything a person puts out into the world comes back to them eventually - I have never seen that phenomenon so clearly as in the last week. You both have touched so many people in so many ways and all of those people who have received your abundance are ready to return it. This sounds so dramatic and cliche but this week has truly renewed my faith in humanity" ... my dear friend

Good night.

Thursday, January 28, 2010

Gratitude + a new focus

The focus for me right now is:

1. eat
2. try to rest some
3. love Phil
4. have faith and trust (not so easy..I'm trying)
5. say YES to any help, creative idea, offering

One of Phil's friend's Chris Moran has helped me to set up a family emergency fund donation button on this blog. Within five minutes -- a donation flowed. Amazing, simply amazing. This will help pay for the car rental for a day or two and a few meals. I am in awe.

I promise there will be so many ways to help. My sister Lisa and Sarah are working with a website called Lots of Helping Hands -- which will hopefully offer some tangebile, bite-sized chunks of opportunity. This will appear on the blog as well.

Faith. Trust. Faith. Trust. Faith. Trust. Faith. Trust -- Yes. I will try. Yes.

A jungle of beeps and wires

It's that special time again. 3 o'clock in the morning. I think I need to accept this rather than fight it with tears, anxiety, and frustration. Now that I've got this blog rolling I'm determined to put my insomnia somewhere -- writing, walking, or bathing. I do usually get a solid 5-6 hours of sleep for all of those who worry about my pregnancy -- this will turn around someday. This is just life right now. Who could sleep soundly as their husband lies miles away in a mysterious jungle of beeps, wires, people, and smells?

Phil got moved to a new room! He is out of ICU. I didn't care what anyone said before about the intermediate status. No one stays in ICU unless they need too, period. He also made it beyond the 72-hour most critical stage. This room change is symbolically gigantic. The room is more spacious, not as loud, and he may actually be able to receive some healing rest. It has been necessary for doctors and nurses to do what is called "neuro-checks" every single hour until quite recently. On the hour they come in, wake you up, open your eyes with a flashlight, make you move one arm, the other, each leg, and try to answer a bunch of questions. I was so utterly exhausted after the initial trauma I can't even imagine his state of being. Can you imagine suffering from a stroke and then being woken up every single hour for three days straight? I know it's necessary but it was starting to feel like sleep torture to me.

I am so grateful for this transition off of the intensive care floor. Sadly yesterday was a hopping day in the ICU waiting room. A surge of about 50 people were there (when I arrived at 4am Saturday night it was only me and one or two other lonely frightened souls). It's exhausting to witness people pacing around with cell phones talking about biopsies and chemotherapy (for a little kid!), major accidents, life machines, chance for life etc. When you are pregnant you are extra sensitive to your environment as well. I can't take it anymore. I am starting to know certain characters in that waiting room from afar - the elder man in rainbow suspenders and a t-shirt that has to call seven people in Alaska daily meanwhile sitting alone, the bearded younger man who always carries his fancy laptop and fresh coffee but keeps his head hung low in his hands more often than not, the same Mexican family (with even more family members now), and the newly shocked fresh souls -- you can always tell. I gotta get out of there for good!

More about Phil: He played a little bit more music through his flute yesterday! He held the shakuhachi completely by himself and made a quiet but beautiful tune. He looked quite pleased. Other big accomplishments (which I am aware of how a week ago I may not gauge these as big accomplishments -- will life be this different forever?): he ate a sandwich by himself, he walked a bit with a walker and physical therapy help, he was telling time on the clock, he listened to many songs on the iPod with pleasure, and he is no longer on too many machines. Now he wears just a heart monitor and is on a few minor medications. These were big steps.

It looks like he will begin acute rehab here at this hospital, the Mayo Clinic, as soon as Friday perhaps (no one ever knows anything for sure around these parts). This is good news. His health insurance will cover this (which social workers feared it wouldn't). Thank god! I haven't let my mind go too wild with what it will cover or will not cover. I imagine helicopter rides and ICU rooms aren't cheap. There really is no other choice for rehab currently. It's either here or another helicopter ride to an insurable center (of which many aren't covered) So, Arizona it is for a while. I have absolutely no idea how long he will stay in rehab. I know in my heart this is his best chance for any re-structuring of life. I have 10 weeks before baby comes -- time is of the essence here.

As many of you know, Phil was previously married to Kim James for a long time and has two adult children (and even some adorable grand kids). Kim, his first wife, Sierra and Aaron, his kids, each made the trek from Missouri and California to be by his side for the last day or so. You should have seen Phil light up to have Sierra and Aaron each by his side holding his hands. This has been a tremendous boost to his spirit. I vividly remember one powerful moment yesterday when each kid was by his side while Kim and I held his feet. He smiled and slept like a baby surrounded by this family love. It was a beautiful fusion of family -- I am so grateful for this. We are becoming even more an example of one of those unique modern blended families. It's been easy for me to become heady in this blended family situation, but when trauma is here -- sheer presence reigns.

Lucky for me Kim James is an accomplished midwife with something like 30 years under her belt. She brought her pre-natal check up kit and we had an informal exam right in her hotel room. Who would've thought? Baby looks good! The real test was my blood pressure. Nothing like a near death car experience, watching Phil have a stroke, driving from hospital after hospital in the dark of the night, and not being able to sleep or eat properly for a spell to test a pregnant woman's blood pressure. Amazingly -- it's 100% fine. Kim and I decided I'm having a textbook pregnancy with an extra-ordinary non-text book life.

I (we) have been flooded with love. It's seeping into every crevice and crack of this experience. I am more grateful than any of you will ever know for each gesture, email, chant, flower, and prayer. The buoy is still afloat. Please keep it coming -- I am starting to read each message to Phil one by one too. We've only gotten through two out of around 100. I will try to read each and every single one to him when the time is right.

On another promising note there have been at least 2-3 members of Phil's tight shakuhachi community that have some real advice about stroke recovery -- they're experienced. First of all, they're writing me an email after having strokes -- huge. Second, they have incredible stories of regaining their life. I have been warned over and over though to remain cautiously optimistic -- each person varies greatly. So this is the new mantra -- cautious optimism, cautious optimism, cautious optimism.

Here's another poem from the vault written by Phil. Enjoy.

who doesn’t want to be a tree

turning each moment's events
into shape,
or biological process
into automatic art

and presenting
for your viewing enlightenment
past present future
in one gnarled
skyward gesture

Wednesday, January 27, 2010

A sea of sadness and hope.

It is so difficult to know where to begin. I suppose with intention. My intention for writing this blog is to keep those loved ones aware of Phil's condition and as a therapeutic outlet. Being married to a poet, musician, and writer can be intimidating when it comes to writing -- (I usually go the photography route for expression) but know this blog is critical right now. I want to keep everyone in the loop, and promise to try to update this blog. I am unable to answer any phone calls, from anyone. I can receive emails and appreciate any email, comments, etc... (more on this later in the post).

First of all, I am filled with so many things. Gratitude. Fear. Hope. Devastation. Sadness. Confusion. A baby. Pure love. Longing. Grasping. Sadness. These circle around minute by minute. When tragedy and trauma strike -- one's mind wants to settle -- anywhere, somewhere, please? The mystery of Phil's condition, his possible chance for life in any recognizable form, and being on the brink of birthing our shared child is almost too much to bear in moments.

It has been exactly 75 hours (as I write this) since the moment Phil suffered from a substantial stroke. I am acutely aware of this threshold of time. These first three days are the most critical (after the first 6 or so hours). Not having ever witnesses a stroke or known anyone who has suffered from one has created quite a steep (like Himalayan mountain steep) learning curve for me over the past three days.

Phil has had a diversion, or ischemic stroke, which began in his main artery on the left side of his neck into and quite far into his head/brain. The artery is still closed and may or may not ever open again. This particular variety often strikes younger, healthier folks. It's more mechanical versus a slow clotting due to high cholesterol, unhealthy eating or lifestyle -- it's a fluke. A complete random incident. The neurologist Dr. Aguilar at the Mayo Clinic in Scottsdale, AZ (where Phil lies right now) has explained it can happen at any moment, for instance while brushing your teeth, turning your head sideways, sneezing. Who knew?

Right now Phil is still in an Intensive Care Unit room. He has been stepped down from "intensive status" to intermediate. This is good news but I am very eager to get him moved to a regular hospital room. I have learned at this hospital every floor you go up, the closer you are to release. He is on the 2nd of five floors now. Not only is intensive care highly intimidating with its zillion machines -- the grief in the waiting room is becoming almost unbearable for me. Meanwhile the grief also teaches me so much and offers great hope for me that Phil really will be ok. Of course I know our life from that initial stroke moment on is never going to be the same. I have no idea in what shape or form it may take. Today I noticed Phil had a new neighbor in the ICU, a beautiful Mexican woman, most likely a mother. She is on life support. The entire waiting room has been filled with her family and friends. It has been flooded with three, four, then ten, twenty, twenty five souls -- kids, young adults, men, and grandmothers. Today it was actually comforting to hear their group sobbing and grieving -- and I actually wanted to be held by them. I knew that they understand how I feel. This power of pure grief -- it's intense.

The most troubling part of Phil's stroke has been his loss of language, speech, and expression. He is able to form some words -- and sometimes speak in fluent flowing sentences. Most often though it's coming out like poetic gibberish -- it's fascinating and completely frightening all at the same time. He wants me to understand so badly. The speech therapist has mentioned this is a GOOD thing. He recognizes it makes no sense. It is exhausting for him and I to forge this road. We usually end in a shrug and just hold hands. For someone like Phil who is as accurate with language, speech, and is such a brilliant writer and poet -- this is horrible. My deep hope is that he can regain, develop new neural pathways, and begin again. Can you even imagine not being able to speak or express – especially if you were Phil?

His body is slowly coming back to life. His left side is in good shape (the stroke was on the left side of his brain -- therefore right body is affected more) but his right side is weakened. Initially the right side was completely limp – little by little some strength is resuming. He is such a willful person though -- my hope is that this will save his life.

I have been trying to get him to hold his shakuhachi flute every day and blow a sound. The first day was not so good, quite devastatingly sad, the silence and awkwardness. Today a little sound came out! I am committed to pushing him to hold this comfortable friend and try every day, every single day. I know in my heart this is a lifeline to his recovery. I hope the brilliant master will play again. I play him music on the iPod daily as well. Music, music, music, music. I know the power for healing therein.

I am exhausted right now. It is 3am. Nighttime is the worst for me. I am trying so hard to eat during the day (I have no appetite at all - I eat solely for this baby in my belly), come back to my breath, and live both in the trauma and relax in any way all day long. I then crash on a random bed (hotel, generous distant friend) by night. But then it happens. I wake up with such heartbreak, fear, anxiety and utter grief in the middle of the night. My guardian angel mother who has agreed to be by my side has to rub my back or feet or head or else I completely lose it.

To all of those amazing friends and family: shakuhachi, Portland, Missouri, New York and worldwide every ounce of your praying, metta, meditating, music creation, and love are my buoy in a sea of unknown. A sea of sadness and hope. I am unable to actually speak to nearly anyone unless they are right in front of me; it’s too overwhelming right now. Every email, sentiment, and creative gesture of help are so deeply appreciated and needed. I am going to need more than I ever imagined possible on every level of my life. I know so many people want to help – believe me I want your help! This isn’t a short-term quick fix band-aid situation. We are going to need your help for weeks, months, and years ahead. Phil has actually taught me this lesson. To be patient and try to move through the crises stage, that’s when, the deep, deep help can unfold.

Phil and I have been in the desert in Arizona on vacation for the past two weeks. I just found his last piece of poetry that he scribbled on a dinner napkin at a retreat where we cuddled up in the Dragoon Mountains in southern Arizona. The mountains there are filled with a special and sacred plant, the agave. Enjoy his words.


At the end of its life
the long-lived agave
shoots up a single stalk
many times its leaves’ height,
sometimes fifteen feet in the air.

At the tip of the slender stalk appears
a giant waxy bloom,
its frilly flourish a strange contrast
to the standing army of leaves below.

The whole thing quickly dies, becomes
a woody skeleton, a wreck,
a desert ghost,
the distant memory of something
that endured a life for the sake of a day.

By Phil James