Monday, September 20, 2010
Our dear, beautiful, and talented friend and yoga teacher Kara Seymour is hosting two upcoming yoga benefit events at The Yoga House in Bridgeton, ME in honor of our family. We are again filled with gratitude and this is another buoy for the spirit in the unknown waters of our life right now.
Please see her website to learn more:
The Maine Yoga House :: Brideton, ME (western Maine)
Thank you Kara and Amy!
108 Sun Salutations
to celebrate the Autumn Equinox.
Thursday, Sept 23rd, 6:30-8:30 pm
Join us this evening as we dedicate our practice to the changing of the seasons and the change in our life. The room is filled with community in spirit and friends. Change is inevitable, it is the only constant so let us embrace the changing times with ease.
Refreshments will be provided.
Wed, Sept 29th 6:00-7:30 pm
Karma Yoga: This class will be offered once a month, and is a donation based class. Each month a different organization will receive the donations from the class. Refreshments will be provided after class. If you would like to bring something to share that would be welcome. All Levels Welcome.
Monday, August 30, 2010
I have discovered that Julian's presence in my life has become my most powerful personal guru or teacher.
"A guru is one who is regarded as having great knowledge, wisdom and authority in a certain area, and who uses it to guide others (teacher). In Sanskrit gu means darkness & ru means light. As a principle for the development of consciousness it leads the creation from unreality to reality, from the darkness of ignorance to the light of knowledge. In its purest form this principle manifests on earth as a divine incarnation (saint), a person with supreme knowledge about God and all creation." wikipedia
My friend David mentioned that he thinks babies come from an outer realm, the baby planet, and they know ALL. We can just watch them and learn and absorb all of their, well, baby-ness and presence. Some say that the reason people are so taken by babies is because they have a direct connection to God. For me their sheer ability to be incredibly present constantly is such a teacher (and at times utterly exhausting). Whatever emotion, feeling, or state of being they experience they embody it with their whole body. Whole body -- breathing, laughing, giggling, crying, angry, sad, happy. They have no filters or blockages.
In the past 48 hours Julian went from being the most perfect baby on the planet (in my opinion) to a fussy, crying, non-sleeping (at all last night!), little ball of fury, then back to a giggling half ball of fury and half clown, flirting, squealing, and now back to little perfectness in the most angelic, cherub-like beautiful state that you've ever seen at 10 AM. And this is exactly why Julian is my guru and teacher.
"–noun, plural -ans, -an. Zen .
a nonsensical or paradoxical question to a student for which an answer is demanded, the stress of meditation on the question often being illuminating." dictionary
Tuesday, August 24, 2010
Tuesday, August 3, 2010
Our Portland friends are pulling together an upcoming concert. Hope to see you there!
Save the date! August 28th 8PM
for the Phil James Family Emergency Fund
Saturday, August 28, 8pm
Trinity Episcopal Church
580 Forest Ave, Portland
Admission by donation
Phil Nyokai James – shakuhachi and piano
Carl Dimow – flute
Nathan Kolosko – classical guitar
Danielle Langord – celtic harp
Nicole Rabata – celtic flute
Mark Tipton – jazz trumpet
Marita Kennedy-Castro – dance
For more information: Carl Dimow – 207-615-1550, cdimow@
Phil Nyokai James is a recognized master of the Japanese flute, the shakuhachi, and also a wonderful pianist and composer. While driving from the Grand Canyon in Arizona this past January, Phil had a major stroke. Paralyzed, he lost control of the car. Sitting in the passenger seat next to him was his wife, Lara, seven months pregnant. In an incredible rush of adrenaline, Lara gained control of the car and prevented the family from heading off the icy road into the mountains. Far from any town and without phone reception, Lara pulled Phil from the driver’s seat and she drove until she saw headlights - and connected Phil with medical care.
Phil was initially very far gone and in acute rehab for weeks. He had minimal speech and no ability to read or write. His recovery has been slow, but steady. He and Lara were able to return to their home in Portland at the end of February, and Lara gave birth to a healthy baby boy, Julian, in early April.
At this point in time, Phil has regained a lot of physical control but still has aphasia and is working to regain his full speech capacity. Amazingly, and thanks to daily encouragement from Lara, he began playing shakuhachi within a week of the stroke. His musician friends have been stunned with how little the stroke affected his musical skills. Nevertheless, he is still recovering and has not been ready to return to a work life of teaching and performing. The family is struggling financially.
This concert is to raise money for Phil, Lara and Julian, but it’s also a celebration. This will be Phil’s first public performance since the stroke. He’ll be joined by a number of luminaries from various ends of the Portland music scene: Nicole Rabata and Danielle Langord playing celtic music; Carl Dimow and Nathan Kolosko playing Brazilian music; the wonderful jazz trumpet playing of Mark Tipton; and the exciting dancing of Marita Kennedy-Castro. The musicians will be working in a variety of combinations and Phil will appear as a soloist and with a variety of ensembles. This promises to be a unique, special and entertaining evening.
For more about Phil, the composer, performer and writer:
Wednesday, June 2, 2010
In many cultures the first 40 days after a baby is born mother and baby are sheltered from the outside world. I have been trying to honor this space in my own modern way as much as possible. It has been a big four months, needless to say and the past 40 days have increased the intensity. But alas, we have survived this boot camp of physical, mental, and emotional obstacles of the latest flavor. Of course, this is not without the help of my mother, Phil's daughter Sierra, my sister, Birth Roots in Portland, Phil's mother, Sarah B., and the countless other community and family members who continue to support us both near and far in an incredible creative way. I was reading in some African cultures, after this first 40 days of complete seclusion, the mother emerges from her hut and is treated like a warrior goddess. She is crowned and revered just like men who go off to battle and return. Our society doesn't honor mother and child in quite the same way -- but birthing and new motherhood is the biggest shape-shifting life transformation I've experienced to date. This is a radically new time -- our two beings learning from one another at a rapid pace, complete experiential learning in turbo time.
Julian is thriving; this is such a miracle and a gift. He has gone from 7 lbs and 10 ounces to around 12 lbs in the past 6 weeks. Rather than being able to write, read, or interact much I have been primarily feeding this child! The nurses at the hospital say, "Oh, this baby really knows how to let his needs be known". Ah, yes. That is one way to say it. Why does this surprise me given his mother and father’s personalities? I go to these new mother support groups and many mothers of newborns have these little soft, bread dough like SLEEPY little angels. Many people also say, "oh this is the easy time, just wait". This concerns me, as our little Julian is, let’s say, highly engaged with the world around him. He doesn't have much time for napping. There are too many new sounds to try, too many facial expressions to explore, body movements to discover, and new smiles to flirt with people in a big, toothless gummy kind-of huge way. We love him and he has been consuming nearly all of us with his incredible force of energy.
Meanwhile, Phil is still recovering in a meandering and up and down way. Our days continue to be filled with sparks of hope and wonder, and sadly dark unknowns about his eventual healing. We both keep trying day in and day out, hour in and hour out, and minute by minute to knit together our lives. Amazing that an event, his stroke, which took maybe five to ten minutes, can so suddenly change the entire course of your life. Phil is determined to keep trying and learning but the hill feels quite overwhelming some days. New fatherhood and being present for my 60-hour birth (yes that is right) has taken quite a toll on his much needed sleep. Meanwhile, Julian and Phil share an incredibly special bond. They look almost identical, expect for the chin. Their personalities seem to be quite similar too as Helga; Phil's mother sends many excerpts from old diary entries by Phil's father about his early years.
This has been my year to squarely embrace both life and death. My life requires me to stay as much in the present moment as possible to stay sane. It is still very unknown what our future as a family holds. The social security disability has still not manifested, how or when we will go back to work in any real way is unknown, how much Phil will recover is a mystery, and where we may need to move this fall is in limbo. The day-to-day rhythm with a newborn also requires you to stay on your toes and just stay present.
Alas, one huge transition has been resolved, for now. Mr. Julian James is here, in full force, and reminding us about the incredible wonder and rapid development of life as it unfolds before our eyes. His brain will grow 60% of its adult size within this first year. This is an incredible amount of expansion to witness. Every day and every moment is filled with the miracle of newness.
This honestly feels like the first moment in at least 40 days that I have been able to string together coherent letters and sentences in reflection. Thank you for reading and there will be more to come.
Saturday, May 15, 2010
The garden’s planted.
In the middle of this city we
celebrate one more season of the old ways,
grooming the earth and gathering
bright green food.
May we remember to teach our children
mostly what’s obvious,
the simple relations of hand and soil,
and may they remind us season after season
of the garden’s first truth:
that all things grow to unique goodness uniquely
if you give them some space,
if you don’t bother them too much.
-- an old poem by Phil James
Wednesday, May 5, 2010
Some of our dear friends have created an art/craft shop on Etsy as a benefit for our family. We are very grateful to them and to all of the artists and crafters who have contributed their goods thus far. Please help us spread the word for both shoppers and for any creative contributions.
To learn more please visit:
Facebook:: This much is enough
Here are some words from Beth Taylor -- artist, friend, and co-founder of the etsy site:
"Dearest Family and Friends,
We have started a website to raise money for very dear friends in Portland, Maine who find themselves in a tough spot at the advent of the birth of their first child. I am writing to seek donations of crafted items (of any size and variety) to sell on the site. All of the proceeds will go directly to the Phil James Family Emergency Fund. Spread the word, invite your family and friends to donate. Here is the direct link:
Craft/Art donations can be mailed to:
This Much is Enough
c/o Birth Roots
101 State Street
Portland, ME 04101
Or left in the entry area under the shelf that holds the brochures if you are local to Portland.
Feel free to be in touch with me with any questions or requests to Beth (contact tab) Once items have been donated and loaded up to the site, we will be in touch again with an encouragement to spread the word and buy beautiful goods from the site.
And thank you so much,
Monday, May 3, 2010
Please help us spread the word and bring your friends and family to a benefit concert in honor of Phil Nyokai James on May 21st at 8pm in Boston.
To learn more about location, artists, and details please click the link below:
BOSTON BENEFIT CONCERT MAY 21st :: 8pm
A giant thank you to Matt Samolis for organizing such a meaningful event! We cannot thank you enough -- Lara, Phil and baby Julian
Tuesday, April 27, 2010
We are blessed with a healthy baby boy!
born on April 15th, 2010
(our little tax man)
7 lbs 10 oz
20 inches tall
With love - his proud parents,
Lara and Phil
*more to come at a later date, I am in new mother mode and this is my first writing experience in almost two weeks!
Thursday, April 1, 2010
When describing our journey to India that Phil and I took in the spring of 2009 most people gasp and say, "I could never do that!" "The poverty, the smell, the brokenness, the dirt, the chaos, not much of a vacation is it?” Phil and I were blessed (or cursed depending on how you view it) to spend around 3 months in this mysterious exotic country as our honeymoon. Most people in our culture also say that they could "never spend that much money, never break away from home/work for that long, etc". I will say it was quite a juggling feat to make it happen. But honestly it cost us far less (besides the loss of daily income) for the entire 3 months of travel than it does to exist here in Portland, ME for even one month! It's all a matter of perspective We of course were not staying in the Taj Mahal in Mumbai -- we were schlepping backpacks and eating lots of street food. Looking back now I know how important this journey was for me on so many levels.
The sacred and the profane that exist hand in hand in the heart of India is the most extreme I've ever experienced. The reverence and the irreverence, the beauty and despair, the brokenness and wholeness, life and dearth co-exist everywhere. The country teems with raw pulsing gorgeous life glimmering amongst the whole stinky mess of pollution, sewage, and extreme poverty. It is an absolute sensory overload. Many moments you wish you could run away and hide and close you eyes and ears and nose to what you are experiencing. But if you close your eyes or ears or nose you might miss the most beautiful music you've every heard, the most incredible visual image of women in neon sparkly colorful saris amongst herds of adorned camels, or you might miss the roadside flower-garland weaver with his jasmine blossoms, marigolds, and rose petals. If you keep your senses open to experience, India can offer delights unlike any other place on earth. She offers you sublime architecture, ornate and wild gardens, monkeys, elephants, and exotic birds, Himalayan mountains, incredibly spicy and flavorful food, colors, singing, art, dance, music, and a deep connection with her people.
To travel in India holds a steep learning curve in which you eventually must surrender and submit -- or sink. I heard of a western traveler who couldn't leave the airport in New Delhi after flying 1/2 way across the world. She would step out of the airport doors into the dust, the cows, the rickshaws, and mayhem -- and run back inside. This went on for two days! She finally split and went on to Thailand. We decided to plunge in and stay.
One of my personal most horrifying moments happened when I was in the backseat of a car in Rajasthan weaving through the desert on essentially a dirt path (not really something we would call a road). We were on the outskirts of a large city with many slums and beggars. A scene similar to something out of Slumdog Millionaire arose right outside my car window as a cow blocking the road stopped us. An older, wrinkled, and bony woman held up a small child who had severe burns (maybe chemical or fire induced) down the entire backside of his body. She was begging for money for her and the child and vacillating between the universal gesture of begging (hand to mouth) and the burns on the boy's back. We were stopped for what felt like an eternity and she had honed in on ME (not the other passengers or zillion of other rickshaws, cars, or taxis) but me and me alone. The absolute worst part of this reality was my deep wondering if she had inflicted this harm to the child out of desperation or if both of them were owned and being forced into this circumstance. If I gave her money it might encourage her to continue to inflict such harm or encourage their owner to continue. I was ripped apart for hours and days to come (and still am). My deep urge was to reach out of this window and grab this child and give this family every single ounce of anything I had -- my clothes, camera, food, water, energy -- anything. But then you look around you and begin to realize that this scene is reproduced in many forms all around you and YOU just can't fix it, you can't. The press and crush of this kind of poverty and humanity is so heavy, so deep, and so present. Our seasoned friend whom we were traveling with had some advice for me that I'm drawing on a lot these days. It was something about how" it's not what YOU do in each of these circumstances because you honestly can't fix them, it's how you let them AFFECT you and how you chose to respond -- keeping the bigger picture in mind at all times". Of course there is an appropriate response somewhere between running away and becoming overwhelmed and consumed by situations. There is a middle path. What is most difficult I've found is keeping an open heart amongst so much pain and shattering -- and simply witnessing, deeply witnessing the pain of others.
Right now our days here continue to be filled with extreme ups and downs. The deeper pull of spring is bursting forth, buds are forming on the trees, and the promise of a new growing season is filled with possibility. Our little baby James is about to emerge into a newly softened air after the crisp edges of a Maine winter. I am due this Sunday, April 4th after nearly 10 months of nurturing this child inside my body.
The grief of Phil's stroke and its aftermath still hang heavy in the air. Our life often feels like living amongst the ghost of what once was. Phil didn't die, but many aspects of our life have died for now and there is grief for this. Many of the elements on the outside look the same. Same apartment, same group of amazing friends, Phil even physically looks similar to pre-stroke (although he has lost much weight and strength and his right side body hangs quite heavy). Aphasia is often referred to as a hidden disability. We bumped into an old friend at the grocery store last night and she hadn't heard any our tragic news, what a relief! Phil gently smiled at her and I kept the conversation flowing, she had no idea what we had been through. We pulled it off -- hooray! This was such a relief -- a slice of normalcy amongst this current tragedy. There is certain vitality to Phil's being that occasionally shines through (although these moments have been brief and far in-between thus far). I know I would experience much less grief if I could try to stay present to the moment and just sense our lives vs. attaching a story line of the past and the future. Interestingly the language center of one's brain is also where the ego center lives. Phil's brain has taken on such a new form but mine is still intact -- for better or worse.
I honestly think I would be able to let go of the story line much more if I weren't about to birth our first child together. There is a natural anticipation in the air when you sit on this precipice -- I think most mothers would agree. You want to give your child the stars. You want for them to land in a healthy nest, for them to have strong, intelligent, capable and loving parents who can provide for them and be present for their needs. I can't help but wonder (and so does Phil) IF and WHEN he will be able to recover enough to be the kind-of father his heart longs to be and husband I long for. We've had nearly 10 months to dream of this little being -- while the last two have been laced by this ghost of what once was lingering around our lives. (It's still cautious optimism regarding Phil's recovery and it's a long meandering road).
The big old WHY? keeps rearing its ugly head. I know it's a useless path with no end result -- but maybe this is a natural rivulet streaming into the river of post-traumatic stress. I know there is no answer to this question, but my mind still faces the big W--H--Y? Many folks say that they "couldn't possibly do what I'm doing". They couldn't be the primary and usually sole caregiver of Phil while being this pregnant and about to go through childbirth. I don't know HOW I'm doing this either? I don't always want to exhibit such resilience, strength, and courage. I don't know how we will manage once our little baby arrives either? I think when you face such things you either choose to plunge in or run back into the airport and take off to Thailand (ah, that sounds pretty nice right now I must admit). This is chaos, it is messy, it is confusing, it is hard, and it holds so much sadness. Meanwhile we are blessed with this new life? The irony!
Soon we will embrace this new life full of aspiration and wonder (and a lot of work and sleep deprivation too -- I know.). I am allowing myself at least 40 days post-birth to surrender to this experience. We've done all that we can do to prepare for this baby amongst so much change and chaos and new life tasks I never imagined. In our childbirth education class the teacher mentions how going through childbirth and becoming a new parent to an infant makes you draw into your deepest resources, and you must dig deep. I feel that we've been doing this for months already. I've done everything in my power to try and carve out a healing path for Phil, save his life, and to care for him deeply meanwhile trying to keep myself and baby as healthy as possible. I've had to do some deep digging.
If you don't hear from me on this blog please know I've gone into the birth cave and new motherhood mode. My request from all of you is to help us keep our hearts open during this time of so much heartbreak and shattering, life and death. Please offer your strength (we need it!) during our upcoming birth and becoming new parents to a new little soul being born.
Tuesday, March 23, 2010
Thank you. There has been such an outpouring of family and community support during this incredibly mysterious time. It has been impossible for me to keep up with thanking every person and honoring each gesture or responding to each phone call, letter, text message, and email. Please be patient with us, and please know each and every aspect of you reaching out and offering yourselves, skills, meals, love, etc. is our anchor right now and is deeply felt and known. Life has been full tilt and my energy begins to wane with baby here any moment. Basically we both (our whole family) are eternally grateful for everything that you all have provided. Please know as the months unfold our response will hopefully be more adequate and appropriate, the thank you cards more consistent, and the connection won't be so one-sided. I know you understand it is just something that circulates between Phil and I on a daily basis, the lack of us expressing our gratitude thoroughly or enough. Phil is very concerned about this but cannot do this himself at this point and I honestly have not been able to keep up.
My friend and I were talking about how in other European countries the government would take better care of a disabled family with a child on the way. So far it has been a pretty big battle with mountains upon mountains of work here in the U.S. So far not much success on our end. I have faith that if I keep trying and persisting this will hopefully change course. Also, we've been mostly immersed in the western medical model (of which I have thanks for as well -- it saved Phil's life initialy) the deeper healing comes from the world outside of the hospital walls. Each funny piece of artwork, drive to a rehab appointment, massage for Phil, nourishing meal are what is healing his brain and cells. There isn't a "cure" for his circumstance but there is healing in a myriad of creative ways.
Our community and family are what keep us afloat on a daily basis. Your love and effort is the silver lining on the cloud of our recent misfortune. Your support restores my faith on a daily basis. Your embrace is composed of the arms that hold us through this trust fall of life. The phone messages, donations, letters, benefit concerts, flute auctions, craft creations, emails, cards, artwork, and creativity keep me going -- I cannot express my gratitude enough (and I know Phil would too if he could).
This photo above was taken in Hardiwar, India. We set this tiny leaf boat afloat on the Ganges River as an offering for our possible baby-to-be last April. It is filled with flowers, candles, and wishes. We watched as it joined the hundreds of other candle-lit leaf boats floated down to the nightly puja where thousands of pilgrims joined for music and devotion. Many pilgrims save money their entire life to participate in this gathering -- arriving bone thin, wearing nothing but thread-bare clothing, shawls, and bare feet. We learned so much from that journey.
More on Phil and the baby soon...
Monday, March 8, 2010
We are blessed with so many creative and generous friends and family members. One of Phil's dear friends, Michael Gould is hosting a benefit workshop and concert in Phil's honor in Monreal this weekend 3/12-14th. Phil was planning to teach in Montreal last month and was quite excited by this opportunity. Obviously life had different designs. This is such an honor and a gift. The shakuhachi community has been incredible in their efforts to keep our life afloat. Below you'll also find a humorous piece by another friend who offered a donation for the workshop, even though he won't be attending. Pretty clever.
Thank you shakuhachi friends!
We have finalized the details for the workshop and concert. It's never too late if you would like to join us.
Time: Friday, March 12~14. First session: Friday evening at 7:00pm.
Place: School of Architecture: 815 Sherbrooke St West, there is an entrance to the Frank Dawson Adams lobby, via a bridge. We will meet at this lobby at 7:00pm, friday evening. Rooms will assigned and posted the first day of the workshop ...
Benefit Concert for Phil James:
Place; Tanna Schulich Hall, 527 Sherbrooke St. West, School of Music, McGill University.
If you would like to purchase a $10. ticket as part of the contribution please use the paypal button on Phil & Lara's blog and notify me by email if you would.
*AUCTION: We will have a flute auction at the concert of an Al Ramos Hocchiku donated by Brian Ritchie. Bidding starts at $300. If you would like to bid, you may send them beforehand (to me in private emails, please). You'll just have to make an offer and hope! So, for those not able to attend, it will be a silent bid. You may start the bidding NOW.I'll keep you posted daily as to the highest bid offered. More details about the flute later today.
A special thanks to Chris Moran who purchased two seats in the workshop even though he can't attend.
Thanks for your help!
Michael Chikuzen Gould
Zen Seating™ @ Nyokai Benefit Concert In the true spirit of "form is emptiness," the infernal and persistent organization otherwise known as The Chinese Fire Drill for Phil™ is still offering an opportunity for you to participate in the March 12-14 shakuhachi workshop ... AND the Afternoon of Shakuhachi Music benefit concert even if you cannot be there! Empty Seating™ .... what a concept! So Zen! an Empty Zen Seat™ for the whole weekend workshop (that you can't be present at in form) is still only $180.00. (Blow empty shakuhachi in an empty seat all weekend long!) But wait there's less ... If you cannot attend the empty shakuhachi workshop all weekend, you can still have the opportunity to purchase an Empty Zen Seat™ at the Afternoon of Shakuhachi Music benefit concert for Phil at only $10 (or 1100-Yen) per Empty Zen Seat™! And, if you act now, you can buy extra Empty Zen Seats™ for ONLY $10 (or 1100-Yen) each. Buy an Empty Zen Seat™ for your wife or girl friend, your husband or wife, your dog or your cat, your delinquent son or your wayward daughter! The more you buy, the more you save! ... and because the seats are Empty Zen Seats™ ... it's like saving absolutely Nothing! So join me in a Zen Seat of True Empitness™ and go to Phil & Lara's blog: Phil Nyokai James Family Emergency Fund PayPal Button And we won't see you at the workshop or the concert, but we'll be Empty™ there with you!
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Sunday, March 7, 2010
These days are wildly up and down. One minute a breath of fresh air from a visitor who brings organic chocolate truffles and a renewed faith of our situation and the next despair over the gigantic tangled mess of our life. One minute I'm crying the next Phil is crying and the next we're so excited to be folding something called "onesies" (this is a little one piece baby outfit with snaps to change the diaper for those of us who are not baby literate including me). One day we're able to both physically walk on the beach in Maine on a 50-degree day and soak up some sunshine and salty air. The next day we're both lightheaded, limping, and struggling to get through a busy Boston street for a neurology appointment. The roller coaster doesn't cease to exist. I know we're all collectively on this ride, the ride called life, but we're just in "heightened awareness mode" as a therapist puts it. This awareness is the stuff the Buddhists are trying to teach us, to just be present to each sensation, each moment, no judging, just a presence to life breath by breath. Our new kind of awareness is spiked and fed with shots of on-going tentative emergencies. On three different occasions I have had the phone in hand to call an ambulance for Phil due to an obscene amount of pain in his head, or him describing buzzing in the brain that just doesn't sound right? But alas, no more ambulance rides yet. As far as major life experiences go, I am also very near my natural "birthing window". After March 11th (four days from now) I could go into birth at any moment, and it would be perfectly normal (although early, normal) hmmm...
I have thanks for this edge, this awareness. I recognize I'm not sitting around complaining about a customer's behavior at the restaurant where I used to work or bitching about a driver on the road, I simply don't care. This awareness has its beauty because life is raw, so real, and you can let the small stuff slide off your shoulders much more easily. You cherish a decaf cappucino with a friend, petting a cat, or simply reading a book with a fresh perspective and appreciation. This is all good but I'd love for this awareness to flow from a place of balance, rest, and peace rather than sitting on the edge of a cliff of trauma and stress.
Lately when I can't sleep or relax an image of a train keeps arising. Someone mentioned the grief factor we must be experiencing arising from this significant derailing of our lives. I keep thinking about that image. It's like we were on a train heading down the tracks on a specific route chugging along. All of a sudden the train had an accident and each car teetered and tipped and screeched to a halt and time slowed down and stood still. Luckily the train didn't completely crash or burn (so close, so close) it just was derailed and has to be rerouted, on a new handbuilt track. This train derailed in a desolate field somewhere in India or Mongolia. No one has any control over the situation, at all. At first there is a lot of action, people running around, screaming, crying, finding their loved ones. Then you figure out the food situation. You suss out who's got the goods like chocolate, booze, and cigarettes and meanwhile others settle in and start signing and rocking their children and accept. Some run up and down the tracks pulling their hair out and freaking out burning up their precious energy. Mind you, this is the kind of place that cell phones don't work and nor do iPhones or blackberries, we're out in the middle of nowhere in a field. In the middle of this chaos others start slowly fixing the tracks. This is going to be an agonizing, grueling, slow process -- pulling and prying up each old railroad tie (with an inadequate amount of tools) and moving them over to place them down by hand, one by one. Each tie takes what feels like FOREVER! In the crowd of passengers you realize a very pregnant woman stands and a baby is coming any moment. Knowing babies don't care if you're in the middle of a mess, a nowhere field, or the perfect clinical hospital setting -- when they decide to come, they're coming, you have no control and it’s NOT on your time, it’s their time from now on.
So here we are in that field. The resources are being shared, the work is being done of laying down a new track by hand tie by tie, the acceptance and nurturing comes in fits and spurts, the praying and meditating and music is happening, the food is being shared, and the baby is still coming -- on their own time. The days and nights roll by and we know a completely new life, new track, and new destination is being laid. Right now we're not so sure what tools we've got, what resources are around, what food is there, when the baby will come, how our life will unfold (but we do have a house full of chocolate thank god!) (For those of us who know Phil and I, well I think we were on the Indian railways to begin with. It was a pretty funky ride, pretty inspiring, pretty colorful and loaded with street food and chai and had it's fair share of ups and downs. Maybe in our next lifetime we'll jump on one of those Japanese bullet high-speed, efficient and organized kinds of trains.
What is your experience of a great life derailing? We've all had them (or will I promise...)Was it a loss of a job, a death, or even a birth, a divorce, a big move, enlightenment? I'm curious.
Tuesday, March 2, 2010
Three and a half years ago our apartment was filled with the presence of a talented radio journalism student and her wires, microphones, and computers. After months of recording, questioning, and following Phil around the student completed her radio documentary segment about “Phil Nyokai James and the shakuchachi” and techniques of listening to sound in general. This piece was aired on Weekend America through National Public Radio in 2006 and here is a link: http://weekendamerica.publicradio.org/programs/index_20060902.html
If you scroll down the page you’ll find Phil’s piece (about 7 minutes long). I had completely forgotten about this interview. A Portland friend reminded me that she listens to city sounds through a different lens based on Phil’s words in this interview. This was a big a-ha moment to dig through our old emails and pull up this interview. I love to hear his voice, his thoughts, and touch down on the Phil that I remember so vividly and one that is possibly re-emerging again although with a new form and shape.
Also, this year Phil had a performance at the gorgeous Isabella Stewart Gardener in Boston for a New Year’s Eve Blue Moon/Full moon art opening and show. Anyhow, as a result Phil made it into the Style and Fashion section of the New York Times! For those of you who know Phil, style is not usually his forte. Out of all of the sections featured in the New York Times we were both equally amused at the fact that THIS was the section he appeared. He LOVED showing me this photo to make fun of all of the times I’ve nit-picked him over his sloppy, mismatched, random clothing selection and crazy hairstyle. He said "Oh yeah, who made it into the style section, you or me?". It’s good to think of a time that Phil could make great fun of me (although I think this facet of his personality is once again emerging…hmmm…not so sure about that). Phil is in picture #14 in the top left corner. You may need to squint a little...http://www.nytimes.com/imagepages/2010/01/10/fashion/10partiespopup-1.html?ref=fashion
Thursday, February 25, 2010
We survived the journey home to Maine. Below is a letter I've written to the work crews of incredible friends and family here who helped us land softly and beautifully (despite the nor'easter like conditions that are rattling our windows and shaking our house as I type). This morning I organized our gigantic pile of mail and gleaned a huge basket of fan mail ready for Phil to open upon waking. It was wonderful to watch him open each treasure.
"Dear generous friends and family --
Last night Phil and I made it home after traveling cross-country from the desert of Arizona to salty and wild Maine. The trip went quite well despite my natural anxiety over Phil's health condition and my being so pregnant (not to mention the "hurricane like winds and weather") we’re experiencing in Maine. My step-dad Larry and Sarah were waiting for us at the airport and brought us home to our colorful, clean, cozy, and much-loved apartment. I honestly cannot thank each of you enough.
Please know that a huge weight of tension was immediately shed from my shoulders as we walked in these doors. I also haven't seen Phil look this happy since before the stroke. We are truly blessed to live in a community where people graciously offer their skills, time, and talents to make these kinds of things happen.
I like to think of this whole situation as "virtual nesting". Here's an example: I'm in AZ thinking, hmmm...we could really use some additional storage with the baby on the way? My sister Lisa in NY finds an armoire on Craig's list in ME, my friend Sarah coordinates buying it and locating it, my step-dad Larry from CO and my co-worker/friend Ken from Bar Lola rent a van, pick up this HUGE beautiful piece of furniture, haul it up the three flights of stairs (god know how?), and place it in our apartment. Viola! Amazing. All expectant mothers should try this (just kidding…)
I know I'll never fully grasp how much actually went into pulling this off. Please know I am aware of every last sweet bouquet of flowers scattered around, paintbrush strokes, sessions of cleaning behind our bookshelves, scrubbing our floors, re-decorating our place in cozy ways, donation of furniture, and the quiche in the oven awaiting our return. To be perfectly honest we both broke down and cried last night and slept like babies. It was incredible. I didn't realize how much I missed home.
There is so much unknown in our lives. Right now, having a cozy nest to lay down our bones and a space to keep healing and growing this baby is one of the best gifts we could have been given. Thank you from the bottom of our hearts.
Lara (and Phil and baby too...I'm sure)."
Tuesday, February 23, 2010
We head home tomorrow, big news! Lots of packing and planning and not much time to write now, but my amazing sister Lisa King has written the message posted below. This same message went out to our Lotsa Helping Hands web community. At the end of her message you'll find some more formal tips about communicating with someone who suffers aphasia and has communication difficulties. Turns out more people suffer from aphasia than even Parkinson's disease but aphasic adults have trouble standing up for themselves (because of communication) so it's kind of an unknown realm to many (including me until 3.5 weeks ago). Believe me this whole reality is BRAND new, so please don't be nervous to be with us. We're the same people deep down -- I'm just hugely pregnant and Phil has trouble speaking...otherwise -- it's still Phil and Lara. Please just read the information below if you've got time or are deeply interested. Lisa, Sarah Bostick, my step-dad Larry, and a whole host of incredible people have been behind the scenes ensuring we land in a safe, colorful, beautiful nest. THANK YOU!
We'll see you on the flip side! Goodbye saguaro cactus, javelinas, prickly pear, desert land, hospitals and cottonwoods -- hello salty air, our amazing friends, east coast grittiness -- and COMMUNITY filled with love.
"Dear friends, family and colleagues of Phil and Lara,
Lisa's thoughts on seeing Phil for the first time and talking with him:
by Lisa King (Lara's sister)
I. Create an Atmosphere Conductive to Successful Communication
- Treat the aphasic person as an adult.
- Create an atmosphere in which the individual is encouraged to make decisions, offer comments, and communicate thoughts and desires.
- Remember that successful communication is the goal, regardless of the modality or quality of the response.
- Ignore the grammatical errors and poor articulation if you understand the message.
- Do not turn "conversation" into "therapy" by correcting or requesting repetition unnecessarily.
- Really listen, give undivided attention.
- Keep distractions and background noise to a minimum.
- Try to keep the communication situation relaxed, thus facilitating reactive utterances.
- Seek and appreciate humor to lighten the communication interaction.
- Look at the person when you speak.
- Speak slowly and clearly, but speak with natural intonation and loudness. Make the most of facial expression and tone of voice, without overdoing it.
- Supplement your speech with natural gestures and pointing.
- Have paper and pencil available. Write down key words from your message, or even sketch a picture, if it will help to get your point across.
- Repeat and rephrase as needed.
- Take your time.
- Confirm that you are being understood. Ask simple questions to make sure. Determine if yes/no responses are reliable, then structure your questions accordingly.
- Keep your messages focused, i.e., one message at a time. Simplify long, complex directions. Break into steps, if possible.
- In a group, one speaker should talk at a time, and switch speakers slowly.
- Change topics slowly, and with warning.
- Ask for guidance or feedback from the aphasic individual. What helps the most? Does it help if I write some words?
- Be an attentive, active listener.
- Be patient, and allow the individual to complete his or her own statements.
- Do not routinely anticipate and fill in the end of statements. However, such assistance is appreciated in some instances. Be sensitive to the abilities and desires of the person. Find out if they want your help, or would rather have more time to finish the statements themselves.
- Focus on what the patient is able to communicate, regardless of the modality (spoken, gesture, written, facial expression, vocal intonation, body language).
- Confirm your understanding by a natural response or a restatement (or expansion) of their utterance. Try to do this in a natural conversation style.
- When you don't understand, encourage the use of gesture, pantomime, writing, and drawing. Always have a pencil and paper available.
- Give the aphasic individual enough time to respond. Before you speak again, watch closely for cues that the individual may be thinking or preparing a response.
- Observe and discern the communication strengths and liabilities of the talker. Rely on the strengths, and try not to let the liabilities get in the way. If the individual produces few words, but they tend to be meaningful, then mentally fill in the "little words" to get the big picture.
- If the individual is talkative, but lacking in meaning, listen and watch for the bits of information that emerge from the words, facial expression, and gesture. Ignore the nonwords.
- Ignore the content of preservations (repetitive utterances) because they are likely to have little meaning. But attend to the way in which they are spoken, because that may convey meaning (e.g., agreement, disagreement).
- Again, be patient and enjoy the exchange. Focus on what you so understand, rather than the communication failures.
Friday, February 19, 2010
It's something about practicing the worksheets from the speech therapist that I find particularly excruciating. Yes our days are changing and Phil and I have managed to go get a bite to eat in public, take a walk around the desert suburban block here in AZ, or even watch a movie together late at night. These special accomplishments are beautiful and wonderful and I have much gratitude, but the worksheets get me every time.
They are worksheets from the speech therapist at the latest rehab center we visit daily. They are copies from some manuals and are carefully placed in a purple 3-ring binder. We are encouraged to do these exercises daily. They are designed to stimulate neurons, help him remember language, and build up the motor muscles used to form words. Sitting beside Phil pointing to images of line drawings such as a star, a toothbrush, a bus, or a teapot and hearing him struggle so profoundly is incredibly difficult for me. Another example is creating ending to sentences such as "The boy went _______." Right now this is nearly impossible for Phil to comprehend or complete. I try to stay present to the task at hand, working with Phil and the worksheets. I try and tap into my years of Buddhist meditation training of simple concentration in the here and now, but the simplicity of this task make it nearly impossible for my mind not to wander off to a mere three weeks ago when Phil could articulate clearly, and honestly was the most brilliant person I've ever been so close to. His brilliance is one reason I fell so deeply in love. Although this same brilliance and his Zen like spoken truth (even in the most difficult of moments) have not always been easy to snuggle up to or to be in a romantic/emotional relationship with. But the way his mind worked, his humor and wit, and the insights he gleaned out of this messy world were one of my best friends. What I wouldn’t give to have him help me make some sense out of our life right now.
Back to Phil’s language, speech, and mental ability, this realm was like the most beautiful tree you've ever seen offering exotic fruits and blooms (all at the same time). Now this ability has changed shape from this painful storm. I know his brilliance lies like a seed deep in the earth of his mind -- but this seed has a very thick coat right now. Even with all of the coaxing, encouraging, watering, and nurturing, there is no way to know how it will sprout and manifest. I know in the case of a stroke that TIME is your greatest asset. I must say this much unknown is terrifying to hold, especially as our shared child rests in my body ready to emerge in a mere seven weeks. Time is quite naturally on my mind.
Usually there is a mischievous sparkle to Phil's being, a humor, and a presence that are hard to tap into right now or see. His face often looks like he is struggling to make sense of his new world. I miss him. I have nothing more to say about, right now.
Saturday, February 13, 2010
It's been about a week since I've written, and yes this is indicative of our last week of life here in AZ. Our realm shifted from the hospital out into the big wide world about three days ago and I have been Phil's primary caregiver.
So here we are on the other side of the hospital doors. We spent 17 days and nights at the Mayo Clinic Hospital in Phoenix. The last two days were particularly grueling as the hospital staff kept me on the edge of my seat the entire time. We didn't find out we were actually going to be discharged until 4:30PM (the night before release) and we’d have to switch rehab centers at 5:30PM (again the night before). This last week has been another steep learning curve in patient advocacy, standing up for our rights to medical records, etc. and trying to figure out how the heck we would live life outside of this place?
But alas -- at around 2pm on Feb 9th we were "discharged". We were both so exhausted mentally and physically from the hospital experience and both apprehensive and nervous about life out here. There were two important factors surrounding this concern:
1. Supposedly you can't ever be transferred from and acute rehabilitation setting to another based on insurance (so this was our last chance at acute rehab) and
2. I finally had to deeply accept that we were leaving, ready or not, and that right now Phil is a new person. Deep down he is still Phil -- but right now he really needs to heal and learn English again.
Although, once I finally accepted that we were leaving I became equally relieved that real "healing" could begin. The hospital helped save Phil’s life and stabilize him initially but can only go so far. I have much gratitude for the initial stabilization and care. However, hospital grounds are naturally a circus of emergency scenarios constantly swirling around and they are not very restful. This hospital doesn't have a maternity ward either so it is more focused on the other end of the life spectrum. There is a lot of broken-ness, sadness, and grief circulating around, everywhere you look. I honestly think tears alone water that therapy garden out front.
We survived and we have made it into this next realm! Phil has been sleeping soundly (and a lot) on a bed that honestly feels like a cloud. We have made a few excursions out to the grocery store and to run a few simple errands. First time this was not so good as Phil almost passed out from the stimulation although the next time he had the stamina to pick out a few vegetables alone and wander off to a new aisle by himself. We’ve also visited his new temporary rehab center and yesterday went to a botanical garden and met and old friend from Portland, ME (who is vacationing here in AZ). Huge steps.
Two steps forward, one step back, and two steps forward again every day. Staving off deep depression is my biggest concern right now. I am trying to keep both of our spirits up but who can blame Phil for occasionally being sad that he cannot read, write, or speak well at the age of 56? And who can blame me for occasionally feeling quite overwhelmed by this whole scenario and being very pregnant with baby coming soon. On a positive note, Phil is walking a bit more every day, he is playing his flute (quite loudly!) every day, and is beginning to be able to read a little bit. He says he can comprehend the words he is reading but cannot say them well or remember them afterward -- the brain is a strange thing!
Lo and behold -- we're coming home to Maine on Feb 24th! I am feeling more and more ready to soak up our community love and get ready to have this baby (only about 7-8 weeks to go!). The initial shock of this trauma is wearing off and the dust is slightly settling (although the windstorm still abounds).
On a logistical note we’ve received many beautiful cards and photos thus far, thank you. Some folks have mentioned items are on the way but sadly the hospital won’t hold or forward any mail. If we didn't get it in time you may be receiving returned letters. Please send them along to our home address. We’d love to get them!
Phil James and Lara Schneider
28 Eastern Promenade #8
Portland, ME 04101
Our mail is being held by the Post Office – so send them right along.
Closing out this posting again with -- gratitude. Huge heaps and loads of it for every facet of support from each and every one of you cherished people.
Sunday, February 7, 2010
Tomorrow begins another full week for Phil, baby, and I here in Phoenix, AZ. Supposedly Phil will be "discharged" from the Mayo Clinic hospital into the big wild world on Tuesday morning, Feb 9th. Of course one never really knows until action is actually happening. This is what keeps you on your toes around these parts! Our loose plan for now is to stay near the hospital for a week or two so he can continue to receive some out-patient rehab at a familiar place, with familiar therapists, and we'll try to help him get his feet on the ground post-acute rehab care.
This is great news, scary news, and a big step for all of us. I am so relieved that medically they deem him fit enough to step off of hospital grounds. I also know this next step is a GIANT one. He honestly hasn't left the hospital grounds, a visit to the therapeutic garden right in front of the main doors is our daily huge adventure and even so he still rides in a wheelchair.
His comprehension seems to be expanding little by little every day. He asked me again to explain exactly what happened to him (regarding the stoke) even though we've repeated the story to him about 10 times. I sensed this time it really sunk in, deeply. We both have so many unanswered questions regarding it all -- and I hope I can get a hold of his neurologists for a detailed de-briefing before he is released.
He continues to play his shakuhachi flute every day. Today he thought he may have practiced for an hour or so (I wasn't there). Isn't that beautiful? Music resides on the right side of your brain (Phil’s stroke was on the left), and thank god Phil is a musician! Basically the iPod, the photos, and his flute are his daily companions.
Phil's biggest challenges seem to be excruciating headaches (due to swollenness and residual blood in his brain -- both not a usual part life) and aphasia (the ability to create language or read, write, or understand). He is however beginning to read and I think he can comprehend some of the words he's reading-- but just can't TALK about them. This whole aphasia thing continues to be fascinating, horrifying, and deeply frustrating.
In our own unique world of communication some sweet, sad, and funny phrases have been uttered and said by Phil in the last week (in essentially these words):
"I love you"
"You are a good friend"
"Everything is good" (everyday he says this)
"I hope I can be at your birth"
"Do you think the baby knows -- in this constellation near me what is happening?"
"I am afraid people will be mad at me if I can't remember their names"
"Why don't you go f**k yourself" (Not what he meant at all – and he kept saying f**k very loudly in the hospital lobby and smirking afterwards)
"You look really beat up today"
"These nurses are old-fashioned snoodles"
Ah, wish us luck as we enter the next realm of the world post-stroke. This feels a bit like jumping off that metaphorical cliff again with a giant leap of faith this time.
I continue to be filled with gratitude for every word of wisdom, element of cheering us on, each listening ear to my crying and freaking out (I'm not always brave and composed you see), every prayer/chant/meditation/musical note, every donation of every size, and each and every single offer of help and generosity. This is honestly what is still keeping me (us) afloat. Right now this feels like the main reason we can jump off these cliffs into the unknown, this huge net beneath us that you all have woven.
** Oh, check out this story about an amazing recovery of a NYC 34-year old musician after his stroke. It's incredible and extraordinarily hopeful and was passed on by Phil's musician friends' Katt Hernandez and her buddies. http://www.defyingtheodds.net
Thursday, February 4, 2010
The roller coaster continues here at the Mayo Clinic in Phoenix. Yesterday it felt like the hospital staff was beginning to gently but firmly shove us out the door of acute rehab. This gentle push has to do the intricate web of insurance policies and the health care system and rehab protocol. Yesterday I was initially confused because I had just begun to get settled into week number one (out of possibly five) of our acute rehab stint here in Phoenix. Being in acute rehab for this set amount of time has been the first plan since the night of the stroke that I've even slightly been able to wrap my head around. As I continue to advocate and press for more information from the hospital staff—I’m learning they just try to get families and loved ones ready for life on the outside well in advance. I understand this but it's just been a huge week and 1/2 and I not feeling ready for the next huge transition (nor is Phil I don’t think).
Today though I’ve been completely floored and brought to my knees again by the fact that Phil is even alive. I just had a talk with a neurology nurse practitioner that basically laid it on the line to me, honestly. I realize so far they’ve been softening the news and gauging what I can handle and when. Basically Phil has some major deficits right now like he cannot read, write, or speak English very clearly. This is so scary to me as we approach entering the big wide world again. BUT, Phil (and the rest of us) should remember to count every blessing. He is alive. He is ALIVE!
I just learned that most people with his type of a stroke don't usually make it. (There are many colors and stripes of strokes and each are very individualized). They haven’t told me this until now. This type is rare; it comes on very suddenly and spreads very quickly. Recently at the Mayo Clinic only two people with this condition have pulled through. Phil and another feisty 75-year-old woman four months ago who had a strong will to live as well. This stroke is an uncommon variety (as I mentioned in the first posting of the blog). This stroke is not lifestyle induced (meaning there wasn't actually anything he could have done to prevent this) it's a rare incident. It often afflicts healthy people -- and they don't know why. The last person who suffered something similar to this here at the Mayo clinic was a 49 year-old marathon runner; sadly she did not make it. Most people don't.
In addition, most people with this substantial of a stroke on the left side of their brain (any variety of stroke) may not ever talk again. Ninety-five percent of our language ability resides on the left side of our brains. For example, a woman down the hall (who is younger than Phil) had a big stroke on the left side of her brain and is now mute. She may or may not ever talk again.
So the lesson of this particular message is to live it up while you can!!! You really never know what may strike at any moment of your fragile life. Although we all theoretically KNOW this -- it's very palpable to me right now. I see it right before my eyes. Earlier today my mind had been racing through all of the logistics of our life. What will it be like when we leave here? What will happen next week, next month, next year? How will I balance having a baby and a newly disabled husband? I've been getting anxious today while trying to figure out social security disability benefits (which is an unwieldy possible six month process), the baby, where we'll live, how or if we'll work, etc?
After reviewing images of Phil's brain with the neurology nurse comparing an original CT scan the night of the stroke and another one now (with slight improvement) -- I am back to just being thankful for life. Life. Simple life. Each and every one of our lives (including the baby residing inside my body) -- has a fragile existence. I too need to remember to keep vividly living, fully.
Here are a few words of wisdom from Phil himself, another old poem:
Met an old man on the road,
he looked wise, I said Tell me what you know.
He said My day is done, I’m almost gone,
come closer, I’ll teach you to carry on.
One, be lively;
two, be true;
three, find beauty whatever you do;
four, each day be still an hour;
five, rise up with quiet power;
six, give away your broken heart;
seven, make your love your art.
p.s. Another note – Phil played the shakuhachi for me today. He can still read the Japanese music (but not English), and although his sound isn’t as strong right now as before it lives on! He played....
Monday, February 1, 2010
Anyhow, Jill has a list in the back of her book about what helped her heal. One artistic idea was creating a collage in her hospital room of photos and cards. I think this would be great. Phil cannot read emails (or read at all at this point) and names and faces of his life are kind-of fuzzy. He needs something visual and tangible for him to see, touch, and hold. This may help him piece together the puzzle.
If you'd like, please send us a photo of yourself or yourselves. Please label the photos with your name and a brief message. I will make a collage we can put up in his room on display. We need to liven this place up! It's not very colorful in here. I don't know how long we'll be here, at least 1-5 weeks so I suggest popping it in the mail by the end of this week (Feb 6th or so) to make sure it finds us in time (before we move on to who knows where?)
Here's the address:
Room 378 (3E)
5777 East Mayo Blvd.
Phoenix, AZ 85054
* this may be slightly different address than the first one we gave out. We've now settled into a room for a spell -- everything will find us, I have faith*
Saturday, January 30, 2010
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: http://en.wikipedia.org/wiki/Aphasia
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
Thursday, January 28, 2010
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.
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
or biological process
into automatic art
for your viewing enlightenment
past present future
in one gnarled