Practical stuff

While I was there, I often had people asking me what could they bring that would be practical, apart from food, when they come to visit Chester. Having spoken to Chester yesterday, I have compiled a list of what would be of great help for him, so please feel free to bring any of the following:

- Vitamin Water (his Dr has suggested he drink it and he can go through 2 or 3 bottles a day) There are a number of different flavors and his favorites include;
Peach Mango, Dragonfruit, Grape, Strawberry Kiwi. He is not able to stomach any of the tea or citrus flavors.

- Sterile Gauze squares (large) Used to help clean his head wound, he goes through a number of them per day - they come in packs of about 25 and the last lot we got were from Longs.

Biotene - either the gum, mouthwash, toothpaste or gel. (Recommended by the Radiation staff) part of the side effects from taking Temodar (the Chemo drug) is that it dries out his mouth, which then makes talking and swallowing much more difficult. The Biotene products help to produce saliva, but the mouthwash and gel are hard to come across (I went to a couple of Longs stores but they were out). Wallgreens (Walgreens?) apparently sometimes stock it as well.

3 hole punch ring binders/folders (I am not sure what you call them there). For keeping his different documents in order and for easy access when he needs them.

Ginger anything! He is crazy about the taste of ginger, which could include cookies, candies, cake......

SUSHI (anything except eel) he has a love affair with raw fish and it is ideal to keep in the fridge for an extra day for when he needs to eat with his meds, but does not have the time to prepare or cook. (he is no longer able to eat wasabi)

THINGS HE IS NO LONGER ABLE TO TOLERATE;

another side effect from the chemo is that it alters his taste and tolerances. He can no longer eat chocolate, garlic, or drink any form of tea or caffeine beverages (dries out his mouth) He is still not able to stomach anything acidic or too spicy. He also has a very sensitive nose, so cannot tolerate incense etc.

Friends have also asked if they should bring potted plants, but he does not have a lot of space to put them.

Keep those hats coming in, he is having much delight in the different styles and creates fun while he is out and about. He even had a cancer patient's sister bring him a hat last week! Important to note is that he needs large size hats - at least 23 inch size.

He finishes up his radiation therapy today, which also means that he then has to let the treatment settle for 3 weeks, at which point they can then do an MRI to check what is going on. He is scheduled for an MRI on 23rd November. Those results will then be sent to the Drs at UCSF and he is scheduled for an appointment with them on 30th November. In the meantime, he is readying himself for the teaching of the Deep Tissue Intensive commencing this Sat 5th through to 20th November. As this will take up most (all) of his energy and focus, he has asked me to let you all know that he won't be available for much email or phone or visit contact. He will have a personal assistant during this time to help him take care of his personal wellbeing, (thanks Chrys!) so please continue to be patient with him during this time. It is a big undertaking for him to be running the course, and he is also very excited about teaching again. It is also something that is giving him so much to live for - his love, enthusiasm and passion for the work is truly evident and I suspect it is going to be a very special experience for all concerned. I hope you all had a happy Halloween - Australia and New Zealand doesn't celebrate it so it was a real treat and novelty for me to be there while all the pumpkin magic was going on!

I was also asked from some of you for my email contact details, which are as below. I would love to hear from any of you personally and hope to meet you again, or for the first time, love Cath
cathcarter@dodo.com.au

Fine Friends

I cannot believe how quickly 18 days have gone by and that I am now sitting in my home in Melbourne, having arrived back here yesterday. It has been a huge journey for the both of us, and we even got to celebrate our 10th year anniversary connection while I was there (we met on Friday 13th 1995 - how apt!) For the time I was there the longest time we had apart was for 2.5 hours, so being that intensely close means that the separation has been quite wrenching for me, especially as the geographical distance is so great. Having said that, I know that he has such wonderful and generous support around him and I have been struck at the love and dedication of all of Chester's friends. When I spoke to him about that, he said not only does he have many friends, more importantly they are all such fine friends. And I got to thinking about those friends I have already known and those I have just met and it struck me that each person has a mythological character that has come forth for the Herculean event of taking care of Chester. So I have started to take a rather bold step and share what I see in some of you, and to those I am writing about, these are meant as endearing and written in a respectful, playful and honoring manner. I have run out of steam (jet lag!), so have yet to finish what I see, but will send what I have come up so far, with below.

For Jaime I see a Guardian Angel, with huge wings for folding around Chester to protect him from harm for making him feel safe. And if you listen quietly you can hear his wings flutter a soothing song as they fold around him - whispering in a gentle, wise and loving voice - 'take your time', 'it's all OK', 'I will take care of you', 'be safe and rest a while'. And while Chester rests Jaime then quietly and reassuringly flies out into the world and with great love, generosity and dedication takes care of dealing with all the outside world, including medical, legal, logistical, billing and accommodation details that need to be handled for keeping Chester safe so he can concentrate on the healing his body. Jaime, you are a gift from the gods and Chester is blessed to have you in his life.

For Marilyn I see a Fairy Goddess Mother, appearing with her magic wand, as she brings color and laughter and gifts and surprises and wicked fun into Chester's world. And when she departs she sprinkles magic fairy dust around the room, so it feels lighter and more nurturing for her having been there. And then she throws in some deep insights and words of wisdom and I want to take her home with me as her love and dedication is all encompassing but I know I have to leave her here as Chester needs her unfaltering love, humor and generous, loyal heart.

And then Chrys shows up as Maid Marion, the courageous adventurer. She has been out in Sherwood Forest, hunting and gathering with the merry men and women on the ways of preparing sumptuous feasts to bring home to Chester. And she quietly and reassuringly goes about her tasks with love and dedication, unobtrusive but always present. The bearer of conscious breath, defender of life's creatures, the hands of a healer that invite safety and calmness, yet the call of the wild sits close by if you choose to look, a fiery spirit tempered with loving wisdom.

So here is to honoring the people in Chester's life I have just met - Dane, Chrys, Neal, Maya, Gabriel, Xo, Beth, Diana, Joe, John, JD, Steve, Spawn, Flame, Yvonne, Joey, Rachel, (nosy) Parker, Auggie, June, Doreen and Jennie. To those I did not meet in SF, hopefully I will next time, and to my old US friends, Barbara, Gil, Annie, Ken, Marilyn and Jaime, my ongoing deep gratitude and love. Thank you all for a the many ways you have supported and are supporting him, I know how much he loves you and needs all your different energies and gifts around him, especially at this time. And in that I know Chester still has much to teach and his work is not yet done, and if anyone can teach the true meaning of the preciousness of live, Chester is certainly embodying that gift back to us; to not take anyone for granted, that every BODY matters, and that we are all on borrowed time, so we may as well go ahead and breathe deeply, living and loving with passion while we still can. As he is oft heard quoted lately - 'I knew the preciousness of breath before - I KNOW it now'.

Falling beds!

I am writing this as Chester is taking speech lessons with his therapist. I wanted to share with you all that he had another milestone the other day - he took his first fall. Barbara and I were both with him while he was outside, walking to his front door, when he fall graciously and almost in slow motion, straight down. It is important not to try and grab him on the way down, but rather to support his falling by standing behind him and placing a leg between his legs so he can then slide down my thigh easily onto the ground. Unfortunately, we had all got way too confident as he had never fallen and he was loving the independence of not having people always so close to him, so he was about 6 steps ahead of us, going at a cracking pace, so neither of us made it in time to assist his falling. However, the whole experience proved beneficial for a number of reasons; he had been fearful of falling, yet survived it with no harm; it gave him the opportunity to practice getting back up off the ground, unassisted; it gave the neighbors an opportunity to show their concern, and most of all it reminded him, and us, of how fragile his body and healing still is, ergo not to be too cocky! So he has gained precious experience from falling, with the knowledge that he can get him self back up and so he sees it as a positive experience. Yesterday Doreen, his Physical Therapist, asked him to do a re-enactment of the fall, in the same place, so she could asses how he got back up. She commented that it worked well even though he did it back to front (that's our boy!)

This morning a new phase has come into play, which for Chester is another breakthrough and exciting moment. In fact he often gets so excited about things that he has to slow down his mind so his heart and body can have a great child like, giggly laugh. To witness his laughter is like experiencing absolute joy from the heart - it also makes every one else's heart's sing and is very infectious, a delight to behold! On the same level he also expresses the whole gamut of emotions a lot more easily, albeit tears, anger, sadness, excitement, loving soft heart, intensity, lightness, joy, rage at the injustices of the world. He has no time to waste on mediocre niceties.

So what made him so excited this morning? He has had to put up with a single sized hospital bed, which has bars on both sides to keep him from falling out while he is sleeping but are very difficult to release down with only one hand, and sometimes the bars jam up so he requires assistance during the night to be able to escape the 'prison' to take a pee... For the last couple of nights he has been trying out sleeping on a double futon bed, but it has been too low for him to be able to pee easily. However, this morning, June, his Occupational Therapist, has found a solution so he can sleep on the futon from now on, so with a sparkle in his eyes and joyous grin lighting up his face he pointed to the phone and commanded me in a sing song voice to 'go quick, no delay, phone the hospital and tell them to get that damn prison bed taken away ASAP, their late, it should have gone days ago!'

A Breath from the Islands

Aloha everybody. This will be short -- especially as I am many thousands of miles out of the mainstream of Chester's life right now. Be that as it may, I am grateful for Cath's posting today and especially for the pictures. They confirm what I was thinking -- Chester thrives! The only other thing I would add to the picture is, "You ain't seen nothing, yet!" He is still in transition -- still developing, still transmuting. That this is happening while he is surrounded by such beautiful spirits (that includes you, Jaime, the man behind the camera!) only makes it that much sweeter! Eyes open, everyone, there is much more to come!

Aloha nui loa,
Bill

Ecstatically Normal

Hi Gang! Greetings from Barbara and Cath here in beautiful downtown Chesterville. It’s been an action and accomplishment-packed week. First, news on the medical and physical front:

The stepping fool has broken another personal record: 118 steps in 15 minutes! (Wild cheers, please.) This is especially remarkable when you realize that each individual step is made up of 4 distinct parts: i.e., 4 smaller steps that all have to be followed exactly, or he will fall. So the concentration involved is astounding. The cheers from the hospital staff on Chester’s 118th step were joyfully deafening.

Another milestone: bath time. Chester chose to take his first shower/bath on his own yesterday. Again, the number of mindful steps it takes him to prepare for this are countless. He would not have tried to do this on his own had Cath not been here. Cath has the ability to be present without hovering; supportive and strong with being interfering or pushy. And Chester trusts her totally. So she stood by, “spotting” as we would say in gymnastics, making sure everything went smoothly. And it did! Another stupendous achievement.

He has also started a new and final phase of his radiation therapy. Since Friday he has been having more intensive and narrowed Radiation. This treatment will last until Wednesday 2nd November, we are all counting down the days. He will have his ‘Graduation’ marked by much sorrow and cheers from both the Radiation Department staff and fellow cancer patients who have seen him as a large bundle of joy and inspiration in an often all too serious and sad surroundings. (maybe a mad hatters tea party?)

He is still receiving intensive Occupational, Physical and Speech Therapy, with marked improvements all around. The therapists are also concentrating on getting him to be as independent as possible, i.e. teaching him ways of getting himself up off the floor should he fall; adding slip free surfaces to the kitchen counter so he can bear weight on his right hand while washing dishes with his left; intensive exercises for working the inactive muscles of his right arm and leg, (with the added joy of the therapists knowing he has an intimate understanding of the muscular/ skeletal system).

Then came the fun. I arrived on Friday. Cath arranged a little dinner party for me and Annie Sprinkle, Jaime, Chrys and Chester. The food was fabulous and Chester reached yet another milestone: eating and chatting at the same time. Prior to this evening, it was hard for him to multitask, but not this evening. It was an ecstatically normal dinner party.

The most moving and profound part of the evening came when Chester gave Annie a healing. Annie has just completed four months of chemotherapy for breast cancer and was feeling pretty low-energy and out of her body. Chester placed his power hand (his right, motor-paralyzed, but intensely alive hand) on her breast. At first she did not feel much---as I said, she has been describing her body as toxic and numb—but then something cracked open. For the next fifteen minutes Annie and Chester shared a laugh-and-cry-gasm. It was so beautiful and so incredibly infectious. Pretty soon all of us were laughing or crying, and often we were doing both simultaneously. Chester says he has never felt more alive than he does now, 8 weeks post-surgery and I am here to attest to the power of that life.

Shortly after this healing, my mobile phone rang. It was my dear friend Pat Lee’s sister calling from Australia. Pat has been very ill with kidney cancer for the past 18 months. Pat passed away at exactly the moment we had all sat down for dinner. I think it was so thoughtful of her to wait to leave when I was surrounded with so much intense love and had the freedom to feel all my feelings about her passing, (which certainly included relief after all she had been through.)

So that brings us to last nights events: the laughing Buddha came out! It started with talking about how Chester’s outings mainly consist of round trips to the hospital, the Doctor and to the drug store. Cabin fever had set in, fuelled by a threesome sushi attack (ménage’ a tres sushi). So Barbara, Cath and Chester, piled into the Honda civic and took off to Katsuga, Chester’s all time favorite sushi palace. We were off for an adventure!! Somewhere in the middle of mounds of seaweed salad, miso soup, sushi, sashimi and Chester’s ultimate favorite – ear clams, Chester took a deep breath, looked towards heaven, and proclaimed the experience ‘ecstatically normal’.

choices and attitudes

Chester had a 2 hour wait for his radiation treatment in the hospital this afternoon, so in his boredom, rather than climbing the walls, (which is an ironic metaphor for him) he decided to park his wheelchair and tackle some internal stairs in the waiting room that had good rails for him to hold. He walked 46 up and 46 down - 102 steps in all which is a record for him, he was so elated, laughing and really enjoying the experience. Well-meaning passers by suggested he could take the elevator, which made him giggle in excitement even more. I suggested that it is a Guinness Book of Chester Records moment! A couple of hospital staff who know him well witnessed and cheered him on as he made his final descent.

What was also interesting about the experience is that as he got to the bottom another patient was complaining to us of the long wait and wanted to change hospitals. I was struck by the chosen attitude people decide to take on - while one patient expended his energy in annoyance and lashing out, another one (our Chester) made the most of the situation and had a life-elating experience. And all this took place while he was wearing a very sassy, bright red, wide brimmed hat that Marilyn had bought him this morning, along with dark glasses which gave him a very Truman Capote look and a lot of 'wow' comments. This experience has given him such joy into this evening and he celebrated by going for a walk under the full moon accompanied by Chrys and myself. Speaking of hats, his hat collection is continuing to grow, so a big thank you to those who have contributed and it makes for some added fun for him while he is out and about and it helps protect his head from the sun, as the radiation makes it very sensitive and he also needs to protect the surgery wound.

On another note, he also wanted you all to know that he would still like emails sent to him in large font with an extra space between lines and he still very much welcomes your writings.

Calling All Kitchen Angels

Dear Friends,

Chester is gratefully receiving donations of meals and food to nourish him during his continued rehabilitation and treatments. I will be coordinating the flock of kitchen angels, with the aim of always having meals on hand for Chester and his assistants. I will also be keeping a dynamic list of Chester's "favorites and requests". I hope that this coordination makes it easier for all of us Chefs and Cooks to provide food in an efficient and graceful flow.

If you would like to join the team of "Healthy Chester Chefs", please email me directly at chrys@healthychester.com. In your email, please indicate your availability for cooking and delivering meals to Chester's loft in Emeryville. Below are a few general suggestions and guidelines. I will be in touch with all the Chefs with requests/information each week.

Chester is currently enjoying:

+ Whole foods: fresh fruits and vegetables, fresh healthy meats (especially fish), and comforting rice and potatoes
+ Mild to moderately spicy foods
+ Soft textures
+ Warm food (not too cold or too hot, just right!)
+ Comfort foods, including cottage cheese, apple sauce and jello.
+ Meals that are brought prepared or ready-to-assemble
- Not too spicy, not too acidic, belly-pleasing foods

Please be in touch if you would like to bring a meal or other food to Chester. Many thanks!

Chrys Curtis-Fawley

Milestones

Hi all, it's Cath Carter here writing from sunny San Fran on Chester's computer - I made the trip over from Melbourne last Sunday and I am staying here for 18 days to help assist in the daily (and nightly) care of our loved one.
He is getting great therapy services from home, and the 3 different therapists are all very encouraging, helpful and professional. His new home works well for his needs and big excitement 2 days ago - he received a wheelchair that actually fits him - the 16 inch was too small and he is so much happier in the 18 inch - the smallest of things can make such a huge difference.

The first night I arrived we did a head shaving ceremony as large amounts of his hair was falling out - we decided to leave a little tuft at the front - very Uncle Fester come Friar Fester and the effect is a lot better than the bald clumps that had formed. The beautiful spirit of his 'family' here is a joy to behold - such touching love, generosity and seamless teamwork/ team play that is palpable. This has the effect of bringing a serene and safe, sacred place for him to manage all the work involved in his healing.

Now for the BIG NEWS - this morning Doreen, his Physical Therapist, decided that it was time Chester try leaving his wheelchair behind and take her for a ONE HOUR walk outside, unaided by her, with only his walking stick. The look of horror on all our faces as she repeated YES, ONE HOUR, had me scared that it would be too much for him - he has probably only spent 10 to 15 minutes tops before now. Not only did he manage it, he also took the stairs 18 up and 18 down and three stairs on the sidewalk, and walked for a whole 90 minutes!! This is a huge milestone and he only just this moment sang out 'I CAN WALK - I CAN WALK!!!' He says he feels like he is at a Revival Meeting and he asked me to quote "Halleje-fucking-lujah - I can WALK!" While he is tired after such a huge excursion, he is also elated and it has given him well earned and renewed confidence.

I had my own little confidence booster this morning. Marilyn took me for a driving lesson while Chester was in Therapy, as I have not driven on the right side of the road in a left hand driving car before (you American guys have got it all back to front!) Anyway, I decided if Chester could survive a brain tumor then I could survive driving on the 'wrong' side of the road, so off we went, with Marilyn taking her life in her own hands. I am happy to report that I actually enjoyed the experience and have just returned back from driving Chester to the hospital, so we have some extra independence to getting around.

We also set up his email in his new home yesterday and he wants you all to know that he is happy to receive your emails, and while he has difficulty typing back, while I am here I will type what he dictates to me what he would like to say, however as his days are full with therapists and radiation treatment, they may not be long replies, but, believe me, he does love hearing from every one.

It is also getting easier for him to read - in fact the other night we did some speech therapy exercises together and it got easier the more he practiced, so much so that he ended up reading a bed time story to me! - a wicked adult fairy tales no less!!!!


It is good to be here and being able to share some quality time with Chester feels very precious. I will endeavor keep you all updated as to the daily triumphs and tribulations

love Cath

New Address & Phone Number

Against my better judgment (in wanting to protect both his privacy and recuperative time), Chester has instructed that I post his new address and phone number for those of you wanting to be in contact with him. Before doing so, however, I would like to ask that all of you who might be considering a visit PLEASE CALL HIM BEFOREHAND to clear your plans. His schedule is such that he has radiation treatments Monday through Friday and so needs to have these as priority Number One.
Also, to simplify telephone conversations, please follow a few basic rules:
1) Ask simple yes or no questions. He will elaborate as is necessary;
2) Ask one question at a time - and try to phrase it without double negatives or such conundrums as "You don't want to [fill-in-the-blank], do you?" - as this can be very confusing in how to answer correctly;
3) Use your best judgment as to how receptive he is for a chat or a visit - listen for his energy level and his tone to gauge his status. While he's looking very forward to resuming social contact, his physical needs (and energy levels) need to be put before his desire to entertain;
4) DON'T try and second-guess what he's attempting to say - just be patient while he works out what he needs to express; and lastly,
5) PLEASE DO NOT JUST "DROP IN!"

That said, Chester now lives at (and Fester Headwear can be sent to):

964 46th Street, #131 in Oakland, 94608.

His new phone number is 510 / 658-8538.

One more time, PLEASE prove him right in trusting that y'all will use this information appropriately! A hesitant - and perhaps overly-protective - Jaime

Headgear ... so far!

Hats for Fester!

Because Chester is losing his hair, he has decided to shave his head completely (it now looks like a rounded mohawk on either side)... moving into what we've dubbed his "Uncle Fester" look (remember the Addams Family?)
In order for him to be in the sun, however, he needs a hat to protect the irradiated skin on his scalp. We have been given one very lovely and coloful "skull cap" but Chester last night delighted in the idea of a "game" of dressing him up with a variety of headwear! So kiddies, here's your chance to make the boy look as silly or as stylish as you'd like...!
Also, an FYI... if you're planning on visiting Chester, and bringing food, please keep in mind that he's having a very delicate stomach lately due to all the chemistry and chemo. Things like Orange Juice or tomatos - anything highly acidic - is now a No-No for the foreseeable future...
Sorry there's not more time for a longer post... We just wanted you to know about the "Hat Party!" xox Jaime

From the New Digs

Hello all you floaters out there,
Sorry for the delay in posting updated information, but this past week has been one of extreme activity. On Tuesday Chester was discharged from the hospital, and we floated on over to his new apartment. As you can imagine, the place had a stove and refrigerator, even a dish washer, accessible sinks - but no furniture. By the end of that day, he had a bed, lamps, his computer, dishes and various other important items to make the place 'home' as much as possible. There were a few glitches, like the safety bars on the side of his bed being impossible for him to safely lower by himself without the danger of falling out of bed. That ability comes in handy when he has to go to the bathroom in the middle of the night. A temporary solution was found and a different style bed is being ordered. Same problem with the wheelchair - too small to be a comfortable as it could be and is also being replaced. There are no dates on those being replaced as of yet.

All in all, it is a wonderful recovery space. The concrete floors give him free gliding in the chair and he walks confidently. The phone was installed yesterday, but as of yet there is no internet hookup, that will come on October 14th. That is one of the reasons there have not been any postings, since we have been there, setting things up and no internet access to let others know what is going on. Chester is doing well, and at this point, having another person be there is an important safety factor. He can use assistance in certain circumstances, but the reality is that he could do practically everything himself. Like he said today, something that took the two of us 30 seconds to do would have probably taken him 45 minutes to accomplish. But most of the time he prefers to do it himself.

He had his first session with the therapists from Rehabilitation Without Walls, and they have set up a schedule for Physical, Occupational and Speech therapy. Yesterday Chester climbed 18 stairs up and back down again. And for the first time since surgery, the therapist had him on his belly, and then on all fours, and putting weight on the arm and leg. He was ecstatic. So his accomplishments keep growing by leaps and bounds. His hair is starting to fall out, in a three inch band across the top of his head, ear to ear. Its an interesting look.

We are putting out the call for meals, people who are willing to stay overnight with Chester, and those who are able to take him to his daily chemo/radiation treatments. I'm going to find an online site to have a calendar (I believe Jay told me Yahoo offers that service) and we will have people sign up for meals on that site. The meals will be for two people, for Chester and the person staying with him. His food is covered till sometime next week thanks to Dane, and I'm sure I'll have the calendar in progress by then. I will post more information on this soon, but if you have a burning question (not food please) you can e-mail me at buttbreath@sbcglobal.net

Chester is really excited that he is going to be teaching the deep tissue massage class with Body Electric November 5 - 20th. He is saying that it might be his last class to teach, so if you are interested in one more class with Chester, call or notify Body Electric.

I have to check with Chester before posting his phone number and new address here on the blog. Keep in touch for more information soon.

Love, Marilyn

Outstretched Hand

Well Dear Ones, so far, so good... The details are coming together for Chester's move tomorrow: the lease is signed, the keys are in hand, the phone's going in on Thursday, etc... The powers-that-be are definitely on our side for these "get-back-to-normal" items.
However!
The other powers-that-be are starting to send in the Bills! And we now really really need your help! The pharmacy has just told me that Chester's chemo medicine alone will run about $3900, which kicks the stuffing out of our Medical Expenses Account. (You've donated $4625 so far, $435 of that has been used to pay against 3 bills). While this wallop is going to have to go on a Credit Card in order to spare this cash for where it will be mandatory, it's apparent that this is just the beginning of the financial struggle. The balance for bills owing - without this chemo drug charge - is already up to $14,057, and that's not including ANY of his hospital or rehab stay as yet... Gulp!
As mentioned previously, NOT ONE PENNY that is or will be donated will go to any expense other than his Medical ones. Chester's daily living expenses are completely covered, allowing ALL MONEY DONATED to be put toward these rising Medical expenses.
On that front, in order to keep everyone better informed, I hope to set up a link here on the blog that will track both the money donated (as generic weekly totals, not individual listings of amounts gifted) and the bills incoming so you can all be privy to where your cash is going. In fact, I thought perhaps some of you might want to vouch for an individual bill once the info becomes available - part of the ambulance ride, for instance, or one of the pieces of hospital equipment that will be delivered/installed... but this is just an idea that can be stretched or mutated in any direction.
However, since we're in the thick of the physical transition at the moment, this blog addition will have to wait a while longer to get posted (whenever Jay & I can co-ordinate).
Ok. I'm done with the begging for today. Thanks for your attention - and your good intentions! xox Jaime

Of Grace & Flo

It's official... the call came this afternoon, confirming Chester's new living space!
Things will really start rolling around here in the morning, so now may be the best time to relay some of what's transpired on this end over the past few days.
Throughout the week - and in spite of some of its "daunting" aspects - Chester continues to improve on all fronts. Physically, he's lost some weight (around his belly - a good thing!), his blood pressure is coming down (139/92 last night - but 5 weeks ago it stood at 162/106!), his incision is healing nicely (the bit of drainage he's experienced the past week or so is greatly diminshed), and he takes great - and well-earned! - delight in the fact that he can now easily stand up to give me a "Goodnight Hug."
In addition, as others have intimated, the "essence of Chester" continues to compound exponentially. We've had several conversations in the past few days dealing with the auric field and accelerated rates of "enlightenment through service/strife" in an effort to formulate a framework for the changes apparent in his being. What he has described as "getting simpler" might be better expressed as "growing more purely essential." And I stress the word purely - for one of the changes I've noticed in Chester since the surgery is a raw, un-adult-erated, emotive quality which some might unwittingly describe as "childlike." For to hear him laugh now is such an exquisite experience - it just trumpets out of him with joy and unconcern for "what's proper." (Not that he didn't sometimes let go before... but it's totally innocent now somehow of any type of personality constraints). So too is his compassionate heart open for anyone to witness by simply seeing the light in his eyes... He's been very moved by everyone he's been in contact with because so many of them have recognized his unstated demand that they be authentic with him. And even those who cannot rise to the occasion, for whatever reason, are appreciated. "No one can be forgotten," he keeps reminding me. "Every One Counts. I Love Every One!" And these pitiful screen characters can carry none of the thick, palpable loving frequency that enlivens them when Chester sounds them.
So - whether it's actually said or whether it's simply sitting in his presence - the Cheeky One, our sweet, naughty, perverse, wickedly-and-wildly-intelligent friend - now radiates in addition to all of that something I can only describe as "essential" or "holy."
It's interesting... one of Chester's biggest joys came yesterday when he phoned his Mom. He told me later (and I don't think he'd mind me relaying this) that this ordeal has so totally transformed his relationship with his Mom into one of loving friendship that it's been worth every second of it... Then in the second after this deeply moving moment, he piped up and said "And you know what else? My grandmother that I was so close to was named Grace. And my mother is named Florence... Grace. And daughter Flo." Then he looked at me with those illumined, laughing eyes and winked at what was coming, waved his hand in the air, laughed down to his toes and said "Grace and Flow! I'm riding the Current!" xox Jaime

More Perspective

Aloha from Deep In the Pacific Ocean. I am taking some time this early evening (at least here it is early yet) to provide yet more perspective on Chester's ongoing saga and to respond to the wide range of emotions expressed in postings for the past week, from the shock of finding out that he will not, at least immediately, be able to return to his home of the past few years, to the wistful description of his "psychic dislocation" give by Marilyn and then Jaime's triumph at finding a suitable place for him to live, one where he is welcomed because of who he is and has always been. I guess that my impulse to do this is prompted in part because tomorrow, in addition to being the new moon, is the 9th anniversary of the day my older brother committed suicide (he was the closest of my siblings in age and interests to me) and Wednesday is the 10th anniversary of the death of my partner of 11 years from an inoperable brainstem tumor discovered only about 8 weeks before. As you can see, I do have some experience in surviving "life-shattering" experiences.

First off, let us remember that it is now only about 8 to 10 weeks since the presence of the tumors in Chester's head was confirmed by MRI. And yet, only about 5 weeks after major surgery, he is doing so well that even the neuropsychiatrist now supports his returning to teaching -- eventually! And his therapists well know after working with him that he is capable of such unexpected twists and turns. But they have to taylor the environment to which they agree to release him to what his capabilities are today and not to where they think he might be in a few months. At this point, my EXPECTATION is that Chester will eventually be able to return to his old apartment, and probably within a fairly short period of time. However, my PRUDENCE insists that he be allowed to reach that point in his own time and manner. Certainly, I also expect him to begin to teach long before he is able to "scamper up" the killer staircase at the school.

Although I am certain it adds yet another element of uncertainty, I am not at all sure that the experience of "not being quite certain who I was before" such a life-altering event is unique to brain surgery per se. To be quite honest with you, there are days when I am not sure that I can remember who I was yesterday, much less before my partner or my brother died. I think that what frustrates Chester even more is the knowing that those "missing" files are there -- neatly packaged in his brain -- but are not readily available to him. One of the reasons he so loves company is that each visit is an opportunity to reconnect with some of those "lost clusters." An example is when I brought in the Hindu calendar for the pictures of Ganesh -- one of Chester's favorites. Well, he wanted to see all of the pictures and picked two others in addition to Ganesh -- one of Shiva dancing and one of Hanamon (not sure of the spelling). He then turned to Chrys and me and asked if we would like to hear the stories about the origins of these deities. We agreed that we did and he proceeded to tell them in a neatly simplified version. What was clear to me from this was that he was recalling these stories from relatively long ago in his past in much more detail than he was presenting them -- and that implies not only the intellectual capacity, but also the artistry, to make such satisfying "abbreviations." But the other thing that struck me is that in the retelling Chester was not only assuring himself that he still possesses the intellectual content of the stories, but was also reevaluating their emotional content and how that fit with his current emotional situation. The upshot is that these stories meant both more and different to him than when he first learned them. I also think there is a corollary that much of the "stuff' we use to "define" ourselves under ordinary circumstances drops completely away in a time of crisis. Certainly that can be disconcerting, but mostly it is not much missed, and, if we are lucky, new avenues for growth appear in areas that were previously choked with our "stuff." As with anything this kind of process takes time and work -- and probably a lot of both. And, it may be that the "old" Chester will forever remain just out of reach to the new. But, then again, I wonder if any of us can say anything different for ourselves?

Well, I certainly have "waxed" long -- if not poetic. Aloha nui all.
Bill

Outtage

If you've visited the blog in the past 24 hours, you may have gotten some strange errors about the server not being available. The site's provider had an outtage on two clusters of servers. As a result, we'll get a few free months of hosting for the trouble.

My apologies for the inconvenience. The trouble should now be over.

Jay

GREAT new digs!

Remind me if I ever need to be prayed for, will ya? I’ll hire you ALL in a nano-second!
The goddesses were with us today when I went to the loft spaces in Emeryville! Chester should have a brand-new, loft-style, wheelchair-friendly apartment waiting for him on Tuesday! (We just need final approval of the applications - but it certainly helped that Chester was known to the management ... They are thrilled he'll be there!)
Anyway. I'm heading back to Herrick just now. We've got lots of details to iron out - and I'll show CM the photos I took this afternoon. (Seeing them on a 2" camera screen didn't add to the experience, ya know? LOL) Details and photos will follow as soon as I'm able.
But I wanted to let you know how beautifully you've succeeded in finding a great haven for our boy - and to request that you now re-direct all your healing intentions back into the Cheeky One!
THANK YOU THANK YOU THANK YOU, each and every one!
The vibe you're providing bouys our every effort!! !! xox Jaime