Heal Nick

Crokinole tournament is just a few weeks away. You will be missed this year but do work toward the first weekend in June for the tournament and the cottage. The lake is still as cold as ever but that first dip is energizing. Keep up the good work in therapy and join us soon. Love, Thelma

Hi to all Nicholas Fans,

I just wanted to take a moment and ask for everyone to send some extra energy to our boy. Nicholas has been doing well this week, but he has hit a small speed bump and is quite groggy due to altered meds and nausea. He is most definitly on the up and up but he could use a boost. So, as you go about your daily lives, playing outside or whatever you are up to…please take an extra moment to meditate, mind spark, pray…whatever you want to call it. Send Nicholas some positive energy and white light so that he can completely get over this small hurdle and continue with his incredible progress.

All that being said, N had a great Speech session today complete with eating a bowl of mashed potatoes. He is definitly feeling better!!

Love to all,
Pamela

Nicholas started the week at full speed. He was introduced to the stationary bicycle, basically climbed on and began to pedal with almost no prompting from the physical therapist. He also walked between 2 therapists assisting with balance and no other equipment. He fed himself mashed potatoes, which he enjoyed. Good to see him eating real food, along with still getting the bulk of his nourishment through a tube into his stomach and he’s gaining some of his lost weight back. I thought the real high point of the week was responding to cue cards, which obviously entailed reading the card (“Touch your nose.”) and responding accordingly. However, added to this, Nicholas would read the card, then show it to us (we were sitting opposite him and didn’t know what was written on it) so we would know what he was supposed to do. The therapist was amazed at this ability to interact, which is not usually seen in traumatic brain injury patents.

Unfortunately, the week ended on a bit of a downer. Nicholas appeared to be more distracted than usual on Thursday and Friday, continuing, even escalating over the weekend and finally culminated today in being pretty much non-communicative. He was, highly agitated today and appeared to be hallucinating. After consulting with his doctor it was determined that this could be a reaction to an increase in anti-nausea & vertigo meds, which were immediately discontinued this afternoon. It will take a few days to get these meds out of his system before we know if they were the cause. It could also be a reaction to some infection. Tests are being run & it will be a few days before the results are in. Along with this, Nicholas could be progressing to the “next level” awareness, which is agitated behavior caused by frustration. If it is indeed this progression, it’s a good sign. Let’s hope it is.

Peter

good morning nic your progress is impressive the wheelchair bit sounds like you can handle route 128 rainy bit nice morning here on wings neck a little kayaking while thinking about you …much love ole gramsxx

Hi Nick - I am so overwhelmed with your continuing progress!! You really amaze us all and I know your progress gives your family such a lift! Reading about your strength, the control you’ve achieved in your neck and your ability to listen are all great indicators of how determined you are to excel. A friend of ours has worked with Accessportamerica.org (check it out) for years and I have told him to keep a lookout for you! It sounds like you’ll be captaining wheel chair races any day now and that should be good practice for Access Sport America activities! Keep up the great work and challenge your Dad to some arm wrestling one of these days! Love and cheers, Chandler

Now that more of you are and, hopefully, will be visiting Nicholas, you need to be aware of certain safety restrictions for his well-being:

1. Do NOT feed him any type of food or drink. This is to be done only by nurses, therapists & certain family members;

2. Do NOT attempt to move or assist Nicholas from the either his bed or wheelchair no matter how insistent he may get. This can only be done by trained personnel;

3. When you leave his room and/or are the last visitor of the day and he is to be unattended, be sure the bedsides are up, his “vest” is on & tied to the bed, the bed alarm is armed, and notify his nurse. If you do not know how to do any of these requirements, ask his nurse. As he gets more active (and frustrated), there is a big risk of falling if he pulls himself out of bed, if he is not physically restricted.

For those who are or will be occasional visitors, please be sure you call me, Kristin or Pamela prior to dropping by, as we need to be sure his therapies are not interrupted & he gets his rest time between therapies. The weekends are still the best time to visit, as he’s free almost all day & evening.

Thanks. Peter

“Hello. Who’s this?” Words spoken last week by Nicholas, when I called Pamela, who was in his room, & she handed him her cell phone. He also called some of his therapist by name, not to mention naming his family, & was wheeled down the hall the other day asking everyone “What’s up?” He will pretty much talk on command by giving short 1 & 2 word answers to questions & very occasionally spontaneously in 3 or 4 word sentences. His voice is very soft, which is understandable. Just another group of muscles that have been dormant for 3-plus months & need to be exercised. There is little doubt that Nicholas is quite aware of what’s going on around him. There have been any number of times we’ll be talking among ourselves with Nicholas always included but mostly listening, and he’ll start laughing (silently) at an amusing story or someone who has done something amusing or silly. The cognitive side of things are definitely connecting.

Physically his upper body strength is very good. If you haven’t seen the photo Pamela posted a couple of days ago, take a look. Nothing wrong with his arms, shoulders & sense of humor. We were outside today. I was sitting on a curb looking up at Nicholas in his wheelchair & extended hand for a lift up. He reached out, grabbed my hand & pulled me up & almost off my feet. Most of his physical therapy this week was spent walking, step ups & leg lifts with weights. It wouldn’t surprise me at this rate he’ll develop enough lower body strength & coordination to take short walks using a walker in 2 weeks. In the meantime he’s getting more proficient maneuvering his wheelchair, which is a large, clumsy piece of therapeutic equipment. As he no longer needs a head rest (neck strength is pretty much back to normal), he’s supposed to get a lighter, smaller, sleeker model tomorrow and already has the “driving” gloves to go with it. Look out! He’ll be terrorizing the hallways or just wheel off on his own to explore some part of the hospital to satisfy his curiosity.

It was the 2nd Sunday in a row of 75 degrees in Boston, and the smiles are broadening.

Peter

Couche’

That is the card I drew for you out of the New Orleans Vodou Tarot back in January.

This is Cayne. I live here in New Orleans where we met roughly a year ago at Jazz Fest.

Couche’ is an initiation ceremony in the Haitian Vodou tradition (you spend the night after ceremony sleeping in the temple)…

The card describes the archetypal state of going within to find answers, a deeper search for truth, and corresponds to the Hermit of traditional decks.

I once came very close to death myself and almost died.

It was the most amazing spiritual experience of my life.

When I ‘came to’ my impression was that the familiar world around me was but a fingernail scratch on the surface of all that is…

It profoundly affected my understanding of many things.

I see you fascinated and amazed by the beauty and vastness of a greater view of creation.

Soaring with eagle’s wings high above the ground….

I look forward to your revelations.

And to dancing with you again at Jazz Fest…

Next year?

Hi All,

Just wanted to let you know that I’ve added a recent photo taken of Nicholas (taken last Fri). He was in physical therapist performing his leg lifts and clearly was not happy with the pillow situation….see for yourself. Anyway, the picture will not only give some of you an updated visual to have in your mind while you continue to send your positive vibes to our boy, but it will help you see how “present” and aware Nicholas is. His humor and mannorisms continue to shine through and it’s a joy to witness. We may post more rehab photos as time goes on. He’s doing REALLY WELL!!! Dad will do a proper update on Sunday. Please continue to send your positive energy and support to N…clearly it’s working more than ever!! I continue to have the utmost pride and confidence in my bro.

Best,
Pamela

Nick,
It’s Jacob getting back from two months of traveling seeing my family and our many mutual friends in so many magical places.
I got a dream job or commission , by The Natural World Museum who are teaming up with the United Nations for an exhibit in SF in for the first week of June. It is so exciting for me to integrate my travels from the past to the recent CA and Kauai photo/video safaris into this project where I am using my printer I told you about to print 12 -4x10 foot silk banners for the entrance of this huge exhibit. I also will be taking videos and projecting many past magic moments onto a 10 foot sphere screen near main stage for this event. It’s the UN’s 60th anniversary, and I’m so honored to be a part of the World Environment day. Many Ambassadors and Governors of the world along with National Geographic and many other big wig exhibits. I’ll say hi to Arnold S. for you and Al Gore is the keynote speaker. Exciting !!!!
I called our buddy Will the other night and we were eager to see you with the sensitivity of proper timing and we coordinated and met to go up and see you. I have to say I couldn’t wait to see you after keeping up with the Sites postings of your positive reactions. I give so much thanks to your bro Colin and family for the continued support and keeping all us up on your positive progress. Well Nick , you are for sure on your way back with us. You and your sister were sweet thumb wrestling. As you were getting comfortable we talked for a while and showed you some slideshows on my computer and showed you your website. I also brought some of our old favorite toys of course. It was Amazing watching you loving Will give you a message with that old message toy. And after we demonstrated it on each other I asked you if you could give Will a message and with out a pause you grabbed it out of my hand and started messaging Will, with control I might add. Amazing !!! We looked at each other and had an awesome feeling inside of reassurance ,, I had Angel bumps and all my hair was standing on end. All of my Trust and all of everyone’s Blessings out to you over these times has truly paid off. I understand there is allot of time to put into your rehabilitation. I still Trust and have confidence in you to the Nth degree. Another toy I brought out was a wrist exerciser I introduced to you a few years ago, you loved it then and you loved it the other night. When I got the Gyro flex going at 100s of RPM and handed it to Will he picked it up right away which is remarkable as it was when we asked if you wanted to try. Again without a pause you put out your hand and with full attention and memory of its tough nature you had it and kept it going for a bit. There will plenty of time practicing with it , but I must say it is for your advanced rehab. We must be both conscious and couscous with in this time of rehab since you are in fact Re-remembering many many details and think it’s important to not rush it and let it flow back in, although ,you would probably have set up a pretty rigorous course for your self.
I sure enjoyed giving you a shoulder rub and messaging your feet. I can tell you enjoyed it and can’t wait to do it again. Also when I said I had to leave and get back to logging videos you looked up and put your hand out to give that bro shake then transition into the other fingertip shake , when you held my hand with force and intention to have one last thumb wrestling match. You won most of them of course.

Even though I’m a supper busy Bee these days prepping for this dream gig in SF, I will see you soon and will continue to send my blessing thoughts and spread the Amazing good word.
I love you bro

Dude-Man-Bro !!!!!

Ciao for now

Jacob

Today was my second visit to see Nicholas, the first being on 23 March shortly after he arrived at Spaulding. We all know him as a strong and determined man but WOW!! I was blown away by the progress: watching him walk and hearing him speak and expressing his brand of humor. The therapists are a great group who obviously have fallen under N’s charms from which no one has been or shall ever be safe.
I smiled all the way back to NH.
Sheila (N’s aunt)

Aloha Nick…….Tobey …..here…so stoked to see the updates and feel so far away but yet soo close to you thru the great info that your folks post often on the net.
Chills rolled down my spine to hear how great you are doing…….Lack of words from friends doesn’t mean one bit that we aren’t thinking about you and checking the website all the time. We love you ……and are sooooo stoked to feel you coming back to yourself……..healing daily.
So I from the currect in house Kauai Crew……Myself….Johnny Love…..Sugar …..and Murray
We love you and send you soooo much light thru this time.
Keep healin’ my brother
Aloha…a hui ho
Tobey

Nicholas-
It doesn’t surprise me one bit that all of your activity has happened around this time. It’s spring and I can see out my window pedals emerging from the dogwoods. We have random flowers popping up all over our yard. My roomate and I wonder who planted them, or if they just arrived there one day. My dog loves lying in the sun, which is odd since his coat is mostly black and I would thing he would get too warm, but he loves it. Then again I love being in the sun as much as a plant but I burn even with sunblock. Not like I need to tell you this, mister redhead.
For the moment I am inside and somewhat sick. Thinking it might be all this new life causing my allergies to act up but hoping it’s not, so it’ll go away faster.
I enjoy the updates from your family. At each description I can truly see you doing all of those things. It’s as if you are speaking to us all through them for the moment, and through your actions. I’m so glad you are.
I’ve starting cooking at the local co-op market in town. It’s so much fun and I’m learning so many good, yummy, veggie and vegan recipes (some meaty ones too). I can’t wait to let you sample some. As you can tell this note is random. That’s me I guess. I still have to get off my butt and mail you a package I’ve had kicking around in my room for a few months now. Sorry about that. I will get to that soon enough. For now I’m off to watch a movie and settle in with some throat coat tea.
Have a great day.
Hugs and love
-Jess

We’re all so happy to hear about N’s continuing great progress, and, yes, it sounds like Nicholas is being Nicholas!
Ted P.

So, it’s 75 in Boston today and, as it should be, Nicholas spent the afternoon outside interacting with family and friends and generally enjoying a great Spring day. Plenty of sun block, except we forgot the back of his hands. It took us awhile to figure this out. We couldn’t figure out why he turned his hands up while resting on the arms of his wheelchair. It appeared he was assuming a quasi-lotus position. It finally dawned on us he was protecting the back of his hands. Once the sun block was applied, he turned his hands over. He’s really beginning to make his feelings known.

The therapies are really beginning to kick-in. He now has pretty much full control of his head and neck, can sit unassisted for 2 or 3 minutes (This is really hard work!), shifts his weight in the wheelchair, does a lot of the work himself transitioning from a supine to sitting to standing when being transferred from bed to wheelchair. He just figured-out how to operate the wheelchair himself and Nicholas being Nicholas pays particular attention to keeping it moving in a straight line…always making minute course corrections. He can also back-up and turn. He decided to spring this bit of skill on us today. Of some concern is he now knows how to unbuckle the seatbelt and can almost pull himself out of the wheelchair. He needs to be watched and this is good! The therapists had him “walking” between parallel bars the other day with his legs bearing most of his weight. It will take some hard work to get the articulation of his joints and muscles working correctly but I don’t think it will be too much longer before he’ll be able to get around for short periods using a walker. His cognitive awareness & skills have increased accordingly. He is getting much better responding with head nodding/shaking for simple yes and no questions and took the first steps toward feeding himself the other day by using a spoon to eat five spoonfuls of organic yogurt. The therapist first tried pudding and custard, which didn’t interest Nicholas at all to no one’s surprise. There’s no doubt his personality and humor are still intact.

The biggest step in the rehab process this week was Nicholas’ weekly evaluation by the therapists who now consider him “responsive”, as he beginning to “interact with his environment”. Last week he was categorized as “minimally responsive”.

The family continues to smile. Peter

Nick,
So many fun times flood my mind when I think of you. Its been a while since I’ve seen you, I think playing some pretty out tunes in a dungy room might have been the last time, but like everything you do it was real and immediate…the thing I respect and admire about you.

One of the good times that comes to mind was when M’head safety officer Dave pulled us over in your driveway in that light blue diesel Rabbit you had. He started yelling at us to get back in the car and stop trying to run away. We were both laughing nearly hysterically when he started in on us about not having our seatbelts on. The seemingly obvious fact that the car was parked and we were walking into your house before he ordered us back in the car notwithstanding…that we could not stop laughing just increased his rage. Anyway, Nick, you’ve never taken the easy road but you’ve always done what you set out to do and I know you will emerge from this garden of forking paths.

Sean Sullivan

Its’ no revelation that everything is related to each other and so goes Nicholas progress. As he continues to get physically stronger his cognitive skills increase. The physical therapists had him “walking” this week with the aid of a sling that bears most of his weight. He is relearning how to stand-up, keep his head up & articulate his legs, although the right leg has a long way to go. Building off of this, he now has enough strength in his neck & trunk to hold his head straight for long periods & move it from side to side at will & last evening he seemed to connect with his right leg, which suddenly became quite active. His hand-eye coordination improved this week with movements becoming very purposeful & deliberate. His response to voice commands has also improved. This morning the occupational therapist had him shave himself & this evening we had him throwing a ball. Nicholas made great progress this week with two definite highlights. First we wrapped him up in warm clothes & wheeled him outside for some fresh air & sun. When I told him we what we were going to do, he put his hat on while still in bed & sat there for a good 10 minutes, waiting for everyone to get organized, just looking at us with an expression of “Come on. What’s the delay? I’m ready!” He doesn’t need to talk, per se. His facial expressions tell all. When we finally got outside, he put on his shades, leaned back in the wheelchair, raised his face to the sun, closed his eyes & took a good nap. He looked like he was taking a break from telemarking at Jackson Hole, soaking up the rays. Second, a couple of his best friends, dating back to school days in Marblehead, dropped by and got him to laugh at some of the stories they were telling of the days growing up.

The family are all smiles this week. Peter

Dear Nicolas, It is wonderful to know you are doing well and at last back in Boston. Through this most beautiful and inspiring website you have, in reality, not taken a break in your creativity. I will be in Boston soon and will be with your mother and hope maybe even to visit. Onward and upward!

Much love from your aunt Sarah

Hi all. I’m Shane, Nick and I moved out west around the same time from the north shore of Boston, I’m from Essex, and was Colin and Nick’s roomate in San Fran for a while. Please read to Nick:

Nick, It’s Shane Bediz. Sorry to be out of touch, I’ve been on the road for 2 months and I always wanted my post to be perfect. I’m sure you can relate. I miss you and love you bro. These prose are from your 4th weekly meditation on a distant island in Thailand. I’m now on Maui, on my way home. Much has happened, but this moment I share really gets to the heart of it, from mine to yours.

Wai Nam beach, Ko Pan Ngan, Thailand, 2/11/05

i rise in a daze
from my bungalow at just the right time
twenty to 9
i have fasted for 8 days on a cleanse
weary, but so clear in the spirit, and deeper mind.
dizzily I climb the ridge above the small bay and beach to a stone ledge
the sun is already hot, steaming the morning mist and jungle.
Looking out, over the tropical deep blue horizon, stretching out, endless and vast
with shivers i try to take it all in, each wave and ripple, of sea and wind and motion,
the kind you like to ride on, the elements of your dance
all is peaceful, not a sound out of nature, just wind, rustling palms, jungle creatures, and the ocean roar.
Sitting balanced in meditation, I realize all the beings around the world sending their love light to you
I set my attention southeast in your direction and aim my third eye,
out of body I fly, arching over heavens, joining in mid air with all the other light beings.
we fly together hand and hand through the air like our skydiving trip, and land in your hospital room.
we join together in a circle around you to create a luminous light around and through your body
a holy and sacred aura bathing you, and shining white beams into your forehead to heal and seal.
we cheer, dance, sing, drum, and jam.
you look brilliant and smile,
and awake laughing, and dance!
your moves are still some of the best,
with just enough edge to keep you rockin, just like you always said you needed.
I will carry this image with me everyday of my journey, especially on your weekly meditations.
my thoughts are with you always my dear friend,
but most thoughts are not for writing
you understand, and feel us, deep within, as you remember
i am on my way east and will see you soon.
soul brother love to you
Shane