We are home!

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.

Love,
Lara (and Phil and baby too...I'm sure)."

Coming home + aphasia communication tips

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,

As many of you know, Phil and Lara are making their way home to Portland tomorrow. This will be a very big step for both of them, requiring all their physical and emotional strength, as well as any support you can provide. While I know many of you are eager to greet them in person, we respectfully ask that you follow the guidelines in this email to help make this transition as smooth as possible for both of them. Phil has undergone a serious brain injury and is in a critical phase of healing which requires extraordinary amounts or rest and rehabilitation. Lara is at the end of her first pregnancy and is also learning how to exist with Phil in this new world. The bottom line: they both need our help, but they also need their privacy and some rest to remain whole.

We have set up a schedule through the end of March on the Lotsa Helping Hands website (if you haven't joined yet, here is the link to our web community: http://www.lotsahelpinghands.com/c/622496/login/ As you will see, visits and meal drop-offs are listed in green, and you can volunteer for either or both. Please sign up for these visits rather than dropping in unannounced. Phil will be keeping to a fairly rigorous therapy schedule and surprise visits can also be unintentionally stressful and energy-draining.

These "sessions" are meant to help Phil normalize into life has he knew it. Feel free to bring along a musical instrument, photos to help Phil remember shared friends/family, or possibly plans to take a short walk or visit a coffee shop together. Don't feel obligated to have an activity, though. Just sitting and having a conversation is welcome and appreciated, and might be all Phil is up for at that moment. As for meal drop-offs, most of you know Phil and Lara are devoted to healthful living, so please keep that in mind (although Lara IS pregnant and DOES love chocolate!! :o) All kidding aside, Phil did pass some significant swallowing tests just yesterday (which is a huge victory after suffering a stroke), so he no longer has any dietary restrictions...this is great news! Whether you're just visiting or you've made a meal or come to play music, please just come prepared to go with the flow. Every day is a little hard to predict.

Finally, I have written my own observations on the best way to communicate with Phil post-stroke, and I have also attached some more formal guidelines for communicating with someone suffering from aphasia (this is the name for Phil's speech difficulty). Please read through these before making contact and also note that phone conversations are much more difficult for Phil than face-to-face interactions.

Lisa's thoughts on seeing Phil for the first time and talking with him:

--This is an emotional experience for both of you and whatever comes up will probably be reciprocal and break any tension. Phil LOOKS perfectly healthy and normal, so do not be afraid.

--Keep your sentences/ideas concise and clear (not always easy) and be sure to ask questions to engage him in the conversation.

--Try hard not to speak noticeably louder or slower; he understands what you are saying. He just might not be able to answer you right away or at all.

--If Phil is struggling with a word that you think you recognize, help him by giving him the first syllable of the word to see if he can locate it (for example, if you think he's trying to say "anarchist", say "an, an, anar" to see if he can get it.

--To follow up on that example, definitely do NOT lose your sense of humor. Phil has certainly not lost his!

--Appreciate that Phil is sitting next to you breathing, walking, playing music, eating, holding your hand, whatever. This is a miracle and we are all lucky to have him in our lives."
by Lisa King (Lara's sister)

Formal tips about communicating with someone who has aphasia: Talking With Individuals With Aphasia: Maximizing Communication Effectiveness
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. 


II. Maximize the Aphasic Patient's Ability to Understand

• 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?

III. Understanding Speakers with Aphasia

• 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.

Time

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.

Steps

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.

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

This life right now ...

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:

a song

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.

He said

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....

Art collage for Phil's room

I have been reading a totally incredible book titled -- My Stroke of Insight -- by Dr. Jill Bolte Taylor. She is a neuro-scientist who at age 37 had a hemorrhagic stroke on the left side of her brain (a different type of stroke but the same side of her brain as Phil). To learn more about her please see her website and check out her book if you're interested: http://drjilltaylor.com/ I've learned a lot from her in one night.

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:

Mayo Clinic
Phil James
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*

with gratitude