Sunday, February 7, 2010

Giant leap of faith


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):

Sweet:
"I love you"
"You are a good friend"
"Everything is good" (everyday he says this)

Sad:
"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"

Funny:
"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

6 comments:

  1. Hi Larabelle,

    I can't believe they are sending you off into the wilds already.... insurance insurance insurance no? Sending love to the three of you. Will send pics when I know where you are. Jim and I are going to Columbia this week for 12 days of shamanic retreat and we will be praying for Phil, you each of you and your family.
    I love you dearly Lara and am with you Mama..... healing energies and love to you all
    bren

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  2. Ah - the "funny" ones gave me a good laugh this morning! It is so great to hear that Phil is playing shakuhachi everyday. I'm sorry the hospital is keeping you three on the edge of knowing what and when to expect the next. I check this site everyday, hoping for better and better news and wishing I could do more at this time. You three are in my thoughts everyday. Keep flowing Lara, you are doing all that you can w/ a grace few know. With love & support and a big hug, Deborah
    ps - I too will send pics (waited on that knowing they wouldn't arrive after I read you would be leaving the hospital) when you know where you will be for a spell. BIG HUG FOR PHIL!! XXOO

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  4. If it makes you feel any better, a few years back, my boss's father had a quadruple bypass at Kaiser hospital in Fontana Calif. and he was discharged two days later. Standard procedure. I was incredulous.

    You might check and see if you and Phil can revisit the therapuetic garden in a couple of days if he needs a kind of historical anchor -- if you sense him being anxious or disoriented about being in unfamiliar surroundings.

    Nearby Tempe and Arizona State University are nice to visit. Cafe's, bookstores. A Co-op. People with long hair. When I lived in Tempe (22 years ago), there was always some nice desert park in close driving distance with friendly saguharo cactus and deep red clay gullies.

    There is a really good video about the American holy man Ram Das after he had a stroke which gave him many of the symptoms Phil has experieced plus it paralyzed his right arm and leg. But it is a very inspiring video. It's called Ram Das: Fierce Grace. I'll have a copy sent to you if you like.

    Anna and I have you in our prayers throughout the day and the night.

    -- Chris Moran

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  5. Lara and Phil-
    I don't think I can possibly express to you how awesome this email was to recieve. truly truly truly. Sharing your experience is really helping to connect the dots and make the situation more real for all of us who love you two so deeply. That said, please tell Phil that if he didn't remember my name, I would tell him a million times before getting upset. hopefully, given our twisted senses of humor, we could learn to laugh about it even. Thank god for humor. I wouldn't be anywhere in this world without it.

    And the bits and pieces of what he has said...my god, I'm so grateful you included that. I laughed and felt my heart get heavy and smiled all within' a few breaths.

    Please tell phil he can call me whatever the hell he wants, and I will still love him. He can even call me an old-fashioned snoodle, for all I care. lol.

    love you both (+ 1) with all my heart...

    *xoxo-mel-xoxo*

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  6. glad that lou's son's story gives you hope. i am really glad that phil is playing his shakuhachi- i'll be happy to play with him whenever he/ya'll likes, even if he's still re-learningi think thats miraculous. oh, and he can forget my name and call me something else all he likes- i continue to send love and energy to you all, and hope this upcomign week of being outside more goes well and brings more healing.

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