2 Day Update

I've started this posting three times. Third times the charm they say. My problem is in trying to communicate my experience in the last two day, in the time that I've spent with Chester. Yesterday, he was so tense (it was early in the morning when I was there, and also later in the day). He was so tense in the evening, going in for his evening meal, I suggested that he eat in his room. He agreed, and we were given permission to do so.

Thursday was a really busy day for him. They had him up early (early dressing and meal) to get to the other hospital for an ultrasound. (I do not know the results of that test as yet.) And the previous day of going to his home and finding out it was totally inappropriate for him to stay there while he is still in a wheelchair continued to stress him out. He had a couple of visitors in the early evening, and I really want to thank the visitors for keeping their visits short. Many times I hear him not wanting people to leave, he loves the visits especially because it is totally out of the routine the hospital's rigid schedule. But the energy output can wipe him out unexpectedly when he over does it.

So we two sat and had a quiet chat while he ate. Because of my schedule, there has not been many times in the last month when the two of us had the time to sit quietly with each other. The main focus of our discussion was around the fact that he feels like he has forgotten who he was before the surgery. He also mentioned that with so many changes, he just can not keep up with all the changes, and he feels that he has lost something, forgotten something in all the changes. I feel that sentence does not flow or necessarily makes sense, but that is how it was coming out.. sort of confused. But with all the changes, I think that is kind of how it must feel to him. A sort of confused feeling of having forgotten or lost something in all the changes, and he can't remember what it is. And this in the midst of all the physical losses and muscles forgetting what they are supposed to be doing that are going on in his body. All I could do in the moment was to affirm that the Chester I knew is still there.

Today he seemed a bit less stressed, though still more stressed than usual. He is really looking forward to being released this coming Tuesday. He informed me that the insurance company has agreed to supplying all the physical objects he needs (wheelchair, hospital bed, etc.) for his move home. Jaime is locating a space that he feels will be adequate for their needs. And the insurance company has also agreed to "Rehabilitation Without Walls," a program of rehabilitation that comes to him, and gets him out in the community to interact with store clerks, finding his way through handicapped entrances, etc. Its a new program, so he was really gratefully surprised that they had agreed to it. He feels he has a guardian angel there at the insurance company.

I did not arrive today empty handed. Since it was lunch time, it was not a latte, but sushi. My experience with him was not like Wolframs at all. He did not smell it, he inhaled it! He cracked me up how quickly he ate (I think he worries that they will take it away from him). I took him salmon, the highest quality fish, of course, and the highest in the omega 3 fatty acids that is good for his brain. We shared the table with two other inhabitants of Herrick, and so we shared the sushi (something had told me to bring enough). We had a very pleasant meal with Napoleon and Margaret who were both jealous that he is getting to go home before they get to leave.

And then he was off to another change - his first outing in the community. He was headed for a bookstore, so I slipped him some money, and the name of his current favorite author (the one who wrote 'Stinky Cheese Man'). I was horrified that they would take him to a bookstore and not make sure he had money in his pocket. (For those of you who do not know me well, I have 6 bookcases, and decorate any horizontal surface I can locate with at least one pile of books).

So more changes are in store. Release from the hospital, relocating in a new home location, and starting new routines of travel to chemo and radiation every day, plus the rehabilitation in and about the home. Keep that good energy coming his way. He is planning to continue teaching and even has the support of his neuropsychologist now, who voiced reservations and doubts at the mention of this goal of Chesters earlier this week. But with changes. Which might be the biggest challenge to face Chester: managing the changes. But then again, this too may change. Its all in flux, flowing and changing, coming back together. Go with the flow.

Sometimes I feel like a child, and I stop and stamp my feet and refuse to flow any further. But I know I could drown if I stop and complain to the currents about where they are trying to take me. So I float. Meet you in the flow.

Climbing the Mountain

Today marked one month post-op. Chester and I took some time to just reflect on these four weeks, and the tremendous amount of life-affirming energy that has been generated by ALL of us in that time. We remembered many moments from the past month and saw so clearly how each day has brought More Life, More Health, and More Joy. We measured the re-awakening of his body. He recalled the day when he realized that he didn't know the ABC's, and then he sat and wrote an eloquent three page letter. We remembered the stillness in his right leg and Dr. Tang telling us not to expect any movement to return. And then Chester climbed 16 stairs! We sat and talked about his journey over the past three months, and found a big fountain of gratitude and joy for being ALIVE and Thriving! This past month has been truly magical, not only in the unfolding of Chester's recovery but in the unwavering love and support that is generated each and every day by this circle of friends, family, and allies. Many thanks to you all for staying with Chester through this incredible month!

And we continue!

Chester is beginning to look into his immediate future and is feeling full of hope, brewing up all sorts of plans for continued teaching and exploration. Today he spoke excitedly about the prospect of teaching Deep Tissue Massage in November as scheduled. He knows that it may look different than before, and is inspired to bring his new lessons and depths to a classroom circle. We are also discussing the possibility of teaching the Breath Intensive as well. As he said today, he has "never been so aware of the preciousness of each breath".

Tomorrow morning the core rehab team, Jacci and Herb, will be coming to Forest Lane to do an in-home assesment, making any suggestions that would ease Chester's transition. Chester will be coming with them, and is excited to try out his new stair-climbing skills here at home. I expect there will be a brief session of dog-therapy as well, if Auggie has anything to say about it!

Chester is scheduled for "discharge" next Tuesday, Oct. 4. HIs homecoming will be both beautiful and challenging, and we are all prepared to make the transition as easy, elegant, and efficient as possible.

Radiation and chemotherapy are underway, and so far the side effects have been much less than Chester expected. The "post-radiation fuzziness" that Chester reports is mild, and he persists in focusing on his rehabilitaiton exercises. I sense that his body has enough resources to deal with the detoxification and the rehabilitation both, with plenty of energy to spare. Laughter is a medicine we are all taking in BIG doses!

After several days at home last week tending my injured ankle, it is pure delight to be back in daily contact with Chester. Indeed, the days of rest were a beautiful chance to really integrate all of the teachings I have taken in this month, and I emerged with an even deeper sense of awe and respect of the process he is moving through. Today, as I began putting both feet back on the ground, I was overhwelmed with the simple joy of walking. Each step, each contact with the earth, is pure pleasure. I know that this is a joy I am sharing with Chester, and a feeling that I intend to remember.

One of Chester's teachings is that "We are of this earth". We belong here, in all of the wacky and diverse embodiments of our humanity. Looking around the dining room today, at all the beautiful humanity that was present, I started to weep. The elders recovering from strokes, folks coming out of amputations, nurses helping folks sip through straws, families gathered around their loved ones. . . So much Human-ness. So much Life.

May you all enjoy each step of the Way,

Chrys

A Visit With Chester

The following was written by Wolfram Arnold who visited with Chester this past Sunday. It really speaks to the experience of 'being with' Chester, not the medical stuff which is amazing, but sitting with him. Just imagine him eating sushi with me instead of melon, and its the same experience. But, in Wolfram's words:

Wolfram Arnold: Visit with Chester
I went to visit Chester at Herrick campus yesterday (Sunday). Chrys had mentioned that he loves fresh fruit, in particular melons. So I went to Berkeley Bowl, which was also a first for me, and picked up the best smelling melons to be found; in this case a so-called Crane Melon, along with a few other goodies, like raspberries, plums, peaches. This was my first visit to his Herrick room and my first awareness was the amount of natural light. I found Chester sitting in his room, writing! This picture was so beautiful that I had a sense of intrusion, alerting him to my arrival. He was happy to interrupt though and pleased to see me. I unpack the melon.

He smells it. And smells it. And smells it. It is a soft, sweet aroma. As he points out while we are eating it later, it is at the peak of ripeness which only lasts a few hours. Sun and earth. Not familiar with hospital etiquette, I was actually somewhat uncertain as to how and where to prepare it for eating. However, little need I worry, Chester has it all figured out. So we do the chores first. He leads me to the patients' refrigerator, the plastic containers contained therein, one of which needs its contents thrown out and to be cleaned. I cut the melon, he slices the soft pulp; we proceeds to enjoy it. It strikes me how agile and adaptive Chester is. Eating with the fingers is one option, a fork would be better, but none is available. He settles on a small plastic cup they use to dispense medication with, as scooper. If you can adapt, you can create.

He savors the fruit thoroughly. It feels like every bite is a new sensory explosion, a feeling of joy and gratitude. Two-thirds of the way through the melon, his enjoyment leads me in a rather impromptu way to pose a simple question, one that he has taught me so well: What are you aware of?He almost chokes on the bite he is about to swallow. I regret having brought about such a change in energy. Then he becomes serious, because little do I know, he has some deep insights to share. He notes that he can afford the space for some creative writing now. When he previously had to consider, re-consider before he could act; he now feels the hyper-vigilance of every single step can be relaxed a bit. While the guard cannot yet fully come down, it can be loosened. This creates space for him.

He speaks about help. How the "need to help" is power struggle, and is the default option. How true help is power-sharing. He speaks about choice, for himself and others; a choice between power struggle and presence. He speaks about the violation of his physical integrity; and about the resurgence of hope. He uses this term several times, resurgence of hope, and it is always accompanied by a gesture of his hand, moving from his abdomen to his heart, opening and rising outward from there. I ask him why power struggle is the default option. He replies, forcefully: Unconsciousness!

He proceeds: He used to love the "complicated mind;" fueled by incessant curiosity. And at the same time, the complicated mind produces a lot of chatter in the head, gears turning fast. Through his present situation, he has discovered what he calls the "simple mind." He says it has surprised him. The simple mind lets him feel joy and peace. I regret not taking notes while he was speaking; I'm fearful of omissions and misrepresentations of his words, his thoughts and message. And while I write, I realize it is my own complicated mind and its curiosity that desires this perfection. In my own interpretation, the simple mind is a state of organic assimilation of these wisdoms, free of need; expansive; peaceful.

Then another visitor, his friend Paul, wanders in. Chester relates a recent accomplishment that has him excited: Walking. No less! Saturday, the Occupational Therapist showed up at the same time as Jaime was about to leave. So, she suggested he walk Jaime to the door. And he did! She only grabbed the front and the back of his pants as safety measure. Then he proceeded on a self-directed stroll around the nurses' station under his own power and balance. Chester says he dreamed he could do it, and still it surprised him too. And at the same time, with all progress, for the first time, he also wondered whether the struggle it worth it.

More visitors show up, Pat and her friend (whose name I didn't catch-sorry). I prepare to leave. He thanks me for talking. I don't know what to say; I ask him if I can share it; he says he has a policy of total transparency-naked but honest. I bow to him; Chester takes his right hand, forms prayer hands, bows back. We part. My visit has left me in awe. Not only is he very much alive inside, his wisdoms and thoughts and teachings that I had already been an admiring student of seem to have been multiplied manifold. His I/O systems are in a state of re-expression and re-formulation. While this has him frustrated at times, he also responds to it with deep insights, marvel, adaptation and grace. This also seems to let him grasp what may be the purpose of this journey.

Holding Positive Energy

Hi all,
I spent some real quality time with Chester this morning. He feels that the radiation and/or chemo are making him feel tired. For the first time in a long time, he was in bed resting when I arrived this morning around 9:30 am. Then a woman named Bergie stopped by to chat with him. She is a survivor of a stroke that created about the same effect on her body as what Chester is dealing with right now. She could not speak for months afterward, and was also in a wheelchair. After she left, Chester remarked that she made him feel hopeful. But then he broke down and started crying. He said that he would like to know how much time he does have, and no one can tell him.

I told him that I carry a dichotomy or a conflict within myself. On one hand there are the statistics that are very scary and threaten to push me into despair. On the other hand, there is the hopeful belief that he will beat the odds. I carry both within myself, but I choose to hold onto the hope and belief that he can beat the odds. So I invite everyone to send him that energy of hope. He has beat the odds so far, in his speach, in his recovery speed, and in many other small ways. The staff cites him as a wonderful person. Bergie said this morning that he helped her more than she could possibly help him. What a testimonial!

I do believe that he will be able to teach, if that is what he chooses to do. I hold onto that belief. But that is step 946, and we are only at step 273 (this is the framework we use to keep ourselves in the present moment). I caution anyone making statements about what he will or will not be able to do. At this point, everything is possible.

So some other mundane facts. I was there yesterday when they measured him for a walking brace. They made a cast of his leg, and the brace will keep him from overextending his knee. It will fit over his leg and the shoe will go over it. Its pretty amazing what they do with braces now days. My brother had leg braces when he was a kid, and they were so big and heavy it was hard just lifting them off the floor. This will be a great help in Chester's walking. They will have the brace ready next Wednesday.

Also, two more days, and they will allow Chester to go to the bathroom (1 & 2, or poop and pee) and get himself in and out of bed by himself, without a spotter. He has been doing this for a while on his own anyway (they don't know how often he has been doing it... but he does not want to wait when he has to pee). He has been becoming more and more independent on his own in the last week. He always did walk fast, and I would complain to him about walking two or three paces ahead of me... and now in the wheelchair he wheels himself faster than me! I guess I never will catch up with him.

Be well and keep that positive energy flowing.

Love, Marilyn

Healing; Hospitals and Hearts

Indeed the universe has lessons for me on health and healing. On Sunday, my "day off" of being with Chester, I found myself in Kaiser's emergency room. This time it was my name on the wrist band, my vitals being checked, and my own painful opportunity for "extreme embodiment exploration".

A severe ankle injury has had me curled up and licking my wounded paw for days. Praying for its strength and flexibility to return. Breathing into the pain, feeling into those mysterious corridors of sensation as sharp pain shoots through my leg, into my pelvis and up my spine. Asking for and receiving help from loved ones. Noticing all of the movement and mobility I have taken for granted. Holding myself in compassion. Practicing patience and conscious movement. Bringing into my body all of the lessons I have been given from my time with Chester.

Today I was given the privelege of sitting with a doctor and looking at the x-rays of my foot. The bones were strong, clean, and intact. I was mesmerized with their beauty. The flesh around the bones, however, is in revolt. The doctor's best guess is severely inflamed tendons, which is causing major swelling and putting pressure on the intricate network of nerves that runs through the inner part of the foot. She strapped me into a huge black "equalizer boot" and told me to "be easy on it" and let it heal fully. I heard this loud and clear, as this injury dates back to when I was 12 and broke my ankle in a defiant act of defending myself and my friends. I never let that wound fully heal- took the aircast off 10 days early so I could frolic on the beach. I've been walking around on a weak ankle ever since, and though I've always been aware of it, I've never fully addressed it. Now, I have the opportunity to heal it more thoroughly and bring all of my awareness to relearning to walk on this earth with both feet strong and sure.

I've missed Chester so much this week, and spent a lot of time resisting the fact that I couldn't be with him for five days straight, especially as he begins the next phase of his treatment. I've held him closely, allowing his presence to flow through me and inform my self-healing. I've resisted the temptation to delay my own healing by rushing to his bedside, knowing that he is well-held and cared for. I've told myself a thousand stories of 'why this, why me, why now' and let go of most of them, returning to the mystery of it all.

My ankle is but one story of hurt and healing. Amongst this "blog-field/circle" there are surely hundreds of stories of growth, repair, strengthening, healing, and transformation. All of our bodies are in this wild game together, dancing the cycles of growth/decay, injury/repair, life/death, gathering/release. . .

May we be Big enough to hold all of this and more!


Chrys

Regarding Chris

Hi all,
I just found out today that Chris sprained her ankle on Saturday.... a really bad sprain. She had an old injury to the ankle (happened when she was 12) that did not heal properly. But the x-rays showed a bone splinter that was cutting into the tendons. She is going to the doctor again tomorrow to find out what needs to be done. She told me that one option will be an operation to scrape the bone.

So Chris could use our prayers/healing energy/wuwu stuff to be directed to her along with Chester. She is feeling that she is letting Chester, and us, down, etc. etc. etc. Consider any scenario, and she has probably spun it through her mind and emotions. She does realize that she needs to take care of herself... so the healing goes on. She said its kind of weird that its her right ankle, and she has taken lessons from Chester moving around with a bum leg to know how to move herself around. She was in pretty much pain, but that seems to have passed with the swelling going down.

She is the second person I know who twisted their ankles on Saturday. Mercury must have been messing around with Pluto or Uranus or something like that. It seems like its always Mercury and those other two guys messing our lives up.

So just know that she has been Chester's 'guardian angel' for the last three weeks. I will keep you posted on her condition. I'll write about the cheeky one in another post.

My love to all, Marilyn

First Radiation Day

Hi all,
I spent a big portion of the day at the hospital with Chester today, some in the morning, and then again in the late afternoon. We will start with the morning. I got to his room about 9:30am with his latte in hand, and he was not there. I was told he was in physical therapy, and so I was able to observe this therapy for the first time. He was laying on his back, knees drawn up and doing exercises with the therapist. Its amazing to see him move his legs, and do exercises to strengthen the muscles. He was amazing the movement in his right leg. We got back to his room just in time for the speech therapist. I was on the phone talking to Chris for most of his session, but she basically just sits and chats with him. Of course, she is asking questions that give her the information she wants and puts him through his speech patterns just by talking. He showed her a letter he was writing, and she gave him 'homework,' editing his letter and inserting the small words he tends to leave out (the, an, a.. those kind of small words. Then came the neuropsychiatrist.... it was like a parade of the employees there almost. And when his half hour was over, here came Herb, the occupational therapist... to help Chester in the bathroom. He actually didn't help, Chester does it himself. He just needed to be there to 'spot' him. A friend, Pat Barber, was there so we went out to get sushi for lunch (and of course we shared with Chester). It was a great lunch. Jaime came in and he was going to go down with Chester for the 'dry run' of the radiation while I ran home to do a few things.

When I got back, it was to find out that the 'dry run' was the real thing. It kind of threw Chester for a loop for a bit. He had been worrying about it, and he was just not mentally ready for it. His take on it afterward was, 'well, one less day at the end of the 30 days.' The oncologist came in and talked to us about the chemotherapy he will start tomorrow morning. She wanted us all to be aware of what the side effects might be so we will know if something shows up to mention it to the nurses. Thinks like headaches, hair might fall out, changes with constipation or diarrhea or other stomach issues, and things like that. He will take this medicine for 30 days, then for 5 days in a row once a month for six months. This is a new drug that has been working really well. She also recommended that he go to UCSF (University of California of San Francisco) Brain Tumor Center for a second opinion. She said they are the best and know all the latest practices for his kind of tumor/cancer. She emphasized that the treatment he is getting there is the state of the art, but since the center for the whole country is in San Francisco, he should go there and have a consultation with a doctor who deals with brain tumors daily. So that is also planned for the future.

So he will be taking Temador (or something like that) plus an antibiotic to ward off PCP, a pneumonia that people on this drug tend to contract. Its given as a precaution. Oh, another side effect might be nausea, but she said that the drugs for that have so many side effects (like dizziness) that you need drugs for them.... and it starts a vicious cycle. So they tend to try to stay away from them.

Enough for now. I'm sure Jaime will correct anything I got wrong (feel free to do so Jaime). We have now moved into a new phase.... being there, allowing him to do for himself.... kind of out of the immediate crisis phase into the maintaining constant vigilance, a hands-off helping. I'm sure there will be other phases too. Keep the healing directed his way. He does believe he can beat this, and does not want to hear about statistics, etc., that might set up negative thoughts. He is sleeping well, and has sleeping pills if he needs them.

I did say enough. It is for now. My love to everyone.

Marilyn

Message from Chester and Marilyn

Hi all,
I apologize for not posting this two days ago, but I blame it on menopause. But then again, I blame everything on menopause. Hey, its quite handy, and who is there to say that its not so? So, with no further delay, words from Chester:

"Now I have therapy goals in rehab, the pressure is off. Help offered is accepted. Therapy is still priority: 7:30am - 4:00pm! Recovery is still an uphill charge, although gains are made every day. Visiting is about sharing dreams, special joys, wicked humor. Cry, laugh, share tenderness with me."

As the others have mentioned, please keep visiting guidelines in mind with your visit. He does wish to see people. Be sensitive to how tired he seems, and don't allow him to overtax himself, either.

I have spent the last two days working on the poster of photo's. I didn't think to take a picture of it before I left him tonight, but I will do that next week. Photo's will still be accepted and put up on the board. But if you are unable to send one, I have a number of bsti's on there to represent you. Those who are slow with their photo's have a special orangutan to represent them. Those of you who are reptilian, snakes. Mama and sister are raccoons (especially near and dear to Chester's heart). There is even a gaggle of geese for Body Electric (birds of a feather, you know).

The poster looks wonderful and Chester loves it. Its very colorful and we put it up on the wall where he can see it easily, especially from bed. So keep the photo's coming. For those of you who don't know or don't remember, send as an attachment to buttbreath@sbcglobal.net. Or mail to me at: Marilyn Gugel, 1710 6th Ave, Apt. #1, Oakland, CA 94606. I can not return photo's, so only send copies or over the internet. Thank you so much to those who have sent them, its a very visual statement to Chester about all of us out here who are supporting him in his journey.

So, until next time, Marwyn... oops, Marilyn

Healthy Chester in Action

Dear Folks,

Just home from another action-packed day of rehabilitation. Here are some photos so you can see Healthy Chester on the go!

Next week, Chester begins his simultaneous Radiation and Chemotherapy. We are gathering information, moving through many emotions, and bracing ourselves for the additional therapies (and their effects and energetic influences).

I will write more about my week's experiences on Sunday, when I have some down time. For now, I am going to continue with my research and learning about his upcoming treatments so that I can best support him in the coming weeks. I am especially focusing my research on food-medicine. We've consistently been supplementing his hospital diet, with everything from fresh herbs to roast wild boar. Foods, herbs, teas and tinctures will play an even more important role during the coming months of radiation and chemotherapy.

Enjoy the images,

Chrys

Anal Radiance Days

Dear Circle,

I first met Chester on the set of filming the "Anal Massage for Relaxation and Pleasure" DVD. This was my first job here in the Bay Area, working alongside Joseph Kramer. I spent hundreds of hours editing the video, watching Chester's hands in motion. This teaching was what launched me so fully into this Work, and anal massage continues to be my "favorite" offering. Chester's CMT course gave me confidence to be with the entire body, and my Sexological Bodywork training has grounded the body of my work in the Pelvis. Still, the AssWhole is my Center, and offering anal massage is one of my most savored activities.

To offer Chester daily support and assistance, I have cleared my schedule of most professional and personal commitments. Joseph and Jane at the Erospirit office have been in wonderful support of this "indefinite leave" as I focus my time with Chester. My lovers and friends have been generous and patient with me. My landlord and grocer, however, are not so understanding. So to pay the bills and support myself through this time, I am offering a weekly day of massage. These days are also a prayer to Chester, and help circulate the energy we are generating through the week back out into the community. May we all be Radiant!

“Open Your Ass. Your Heart and Mind Will Follow”
–Chester Mainard

Anal Radiance Days
Tuesdays September 20, and 27, October 11, 18 and 25

Sessions of full body touch, breath and presence,
focusing on your anal relaxation, pleasure, and radiance.

2 hours sessions $125- $200 donation

Sessions available all day and evening. Sessions will be held in Chester's studio in the Berkeley hills.

All funds will be used to support myself and my daily assistance
of Chester during his rehabilitation processes.

Please email to schedule your session or for more information:
openhands@mac.com

Chrys Curtis-Fawley

Certified Sexological Bodyworker
CMT: Chester Mainard Trained

Chester's Snail Mail Address

Dear Friends,

We continue on this incredible journey, all of us together.

Chester continues to thrive, each day opening up more motion, his speech becoming more fluent, his fierce energy moving him through a rigorous day of rehabilitation.

The more research I do about glioblastomas, the more I realize what Chester is sitting with right now, the more miraculous the journey feels. I have paid attention that the three metaphors that come up most often in the glioblastoma literature is "star", "spider" and "octopus". My own visualizations have been richly informed by my medical research, and has deepened my respect for what Chester is reckoning with.

Chester is able to read your cards and letters. He has had to refine his economy of language, and I suggest you practice this in your writing to him- he can read on paragraph better than a whole page! And humor, images of animals, and other blessings have been well received and much appreciated!

Please send all letters, photos, etc to:

Chester Mainard
Room 5114
Alta Bates Hospital Herrick Campus
2001 Dwight Way, Berkeley, CA 94704

In touch,

Chrys

The View from Herrick

After eleven days at the main campus of Alta Bates hospital, Chester was transferred today to room 5114 of the Herrick campus for a period of intensive rehabilitation. He has a private room (I told the intake woman that he is "easily distracted") with a lovely view of the Berkeley hills. We hung up the prayer flags, hung up cards, arranged the flowers and decided to leave more redecorating for another day. He is happy that his next big move will be to Home!

We spent all day completing the move and meeting some of the key members of his rehab team. Chester is happy to be there and is ready and determined to make the most of his rehabilitation schedule, "boot camp" style. He will be in intensive therapy six hours a day, six days a week, starting at 7:30 am.

I am tired after today's move, so this post will be brief and focused on a few logistical points.

1) VISITING AND PHONE CALLS
Chester wants to focus all of his energy on the intensive rehabilitation process. He will be tightly scheduled six days a week - at least six sessions a day of Physical Therapy, Occupational Therapy, Speech Therapy, Recreational Therapy, and meetings with several specialists including a Neuropsychologist and a Rehabilitation Physician. On top of this, he will be beginning his radiation therapy this coming week.

So: NO VISITORS Monday-Saturday! Sunday is his "day of rest," so this is an open visiting day. Of course, he may need to rest or be with a doctor, so if you visit don't be disappointed or take it personally if he can't see you for more than a few minutes.

Chester spoke with his Mother and Father on the phone for his birthday. It was very exhausting for him, and while he was glad to speak with his beloved parents, he realized he his not yet ready for other phone calls. We have disconnected his phone, so NO PHONE CALLS.

2) COMMUNICATING WITH CHEEKY
Chester is very aware and grateful for this amazing network of love and support. He feels you and it is helping him move through this challenging time. If you have any words that you want to share with him (knowing that your thoughts and energy are being received loud and clear), please send me an email at chrys@healthychester.com, and I will print it out and bring it to Chester. I have already been printing out many of the guestbook entries and sharing your beautiful words with Chester.

3) CHESTER's STATE OF BODY AND MIND
Some folks have mentioned how upbeat we all have been and are curious what Chester's status is. Please trust us that we are not sugar-coating anything for your amusement. Our delight and awe at his progress is very real and reflective of the incredible and difficult work Chester has dedicated to his recovery. And, we are seeing him recover after watching his body slowly shut down for six weeks and after he woke up from surgery with no movement on his right side and very little speech. So, given the context, his daily recovery and blossoming have been gorgeous and inspirational.

That said, I'll give you a sketch of his current body/mind state so you have a sense of where he's at and how much more room for recovery is.

Chester's overall health is great. His vital signs are steady, his blood pressure is better than ever, and his circulation is strong. He has had a sore throat for several days, which the doctor told us today is probably still from the tubes that they put down his throat during surgery. He only started feeling it when he came off the post-op pain medications. This made sense to us and he's treating his throat with tea, throat drops, and salt gargles.

Chester's body is slowly coming back into balance. His right leg is rapidly gaining strength and movement. He can take small steps using rails for support and balance. Movement is radiating outwards, first the hip came back online, and now movement is slowly coming into his knee and ankle. We are pretty confident he will walk again, perhaps within the month. His right arm is frail but energetically is very alive. He can now flex his arm in and curl up his fingers, but has not yet got the tougher and more elusive extension. This is a normal progression, and our focus now is on keeping it relaxed and extended so he does not get locked into a flexed position. We are giving his arm lots of love and massage, and encouraging it to stay relaxed and radiant.

Chester's speech is rapidly improving as well, but still requires huge amounts of focus and energy. The daily improvements are wonderful, and are reflected both in his speaking and writing. Today a therapist told us that his progress was "off the charts," and that many male patients don"t even begin to recover speech for a full year! The speech is Chester"s main source of frustration and biggest invitation for patience. Chester is a Teacher, and when he has something to say, he wants to say it. His cognition is strong, so he has LOTS to say, and it takes so much effort to get out even short phrases. We are using a variety of techniques to communicate, and often ending up laughing and playing with language to overcome the frustration.

Chester"s spirits are high and his energy is tremendous. The emotional journey is an honest one, with a wide range of emotions that wave through. He knows that we are big enough to hold all of it. While I witness him experiencing a lot of different emotions, I most often see him return to gratitude. He is happy to be alive, and no longer takes it for granted. He knows that he is loved and supported by a vast community of caregivers, and realizes that makes him a lucky soul indeed. He is seeing more clearly than ever that he has "touched more people than he knows."

Chester's wisdom is now being sourced from an even deeper place. As his speech returns, he is able to share more of what he is thinking, and I've been moved to tears several times by his delicate and brilliant teachings. Soon we will start audio recording more of his speaking. And he is itching to get back to the classroom, and his students will be gifted with his presence again.

5) COMPLEMENTARY THERAPIES

Many folks have passed on info on additional healing modalities to recommend to Chester - from acupuncture to Brazilian shamans to nutritionists to Reiki. Thank You and keep the referrals coming.

Chester and I discussed complementary therapy today and are going to start integrating more into his days, while maintaining focus on the Herrick rehab boot camp and his radiation therapy. We will most likely be doing acupuncture next, and consulting other specialists in the coming weeks and months. Meanwhile, he is doing a tremendous amount of self-work, I am offering him lots of massage, and he has loving hands on him night and day, from near and far.

His "healing barometer" is full up and the results are stunning.

6) IN CONCLUSION. . .
We humans are amazing, magical Beings. Chester is both extraordinary and totally ordinary. One of his deepest teachings is that we ALL have the ability to be Present, Conscious, Relaxed and Awake. He gives us permission to be exactly what we are in each moment, and extends the invitation to meet him in a state of relaxed presence. Simple, really. And life changing for so many of us. . .

More to come!

Great News and I Need those Photo's

Hi all,

Great News! Chester was moved to Herrick Hospital today. Dr. Tang said "they finally relented," referring to the insurance company! Chrys will post more later. I've taken photo's of him in his new digs (a PRIVATE ROOM - shout hurray from the rooftops!) They will get on the blog as soon as Jay can get to it (he is so marvelous setting up these sites for us and taking care of them).

Also.... get those photo's to me. Especially those of you down under... you know who you are. I won't start naming names - yet. Thanks to all those who have been able to get them to me. Now that he is in Herrick, I know that our collage will be able to be in one place.... and stay there. I want to publicly say thanks for the hairy butt... it will definitely be in there with the rest of the recognizable faces.... so to speak.

Love to all, Marilyn

Send pictures to marilyn@healthychester.com.

The Move is a Success!

Whew. (!)

A good amount of work the past week has gone into carving out our own space for this site on the net at healthychester.com, as you are well aware, dear reader. I have successfully moved the blog from the free hosting at blogspot.com (many blessings to them!). That was a bit tricky, and it worked. I hope no one is lost along the way.

I've also set up a new forum, which I think you will really enjoy and value. You can get there here:

http://forum.healthychester.com

Please keep in mind that everything in here is still very new - you can probably still smell the virtual paint.

I was hoping to celebrate the birth of this new site while folks near the bay were celebrating Chester's birthday. I didn't exactly make that timing, and I'm pleased with the roll-out nonetheless.

Please let me know if there are bugs anywhere, as well as suggestions for improvements. My goal is to make this site work to further improve all the connections we already have.

This has really been a labor of love.

I'm exhausted, and I'm going to bed. Sweet dreams to all.

P.S. OK, I see that you hit dead air when clicking on pictures. I'll fix that soon. :S :)

On Talking, Touching, and Teaching

Chester is now one week post-operative.

His recovery and rehabilitation have been extraordinary. He is, in each moment, riding his resilient edge of resistance. He is fully dedicated and focused on reawakening and reclaiming movement, balance, and speech. Chester is fiercely alive and aware of the preciousness of each breath. He is aware of a wide network of love and care and he is very grateful for all of the energy and presence. It is felt, deeply, by all of us at the hospital. A nurse walked in the room today and exclaimed "I just feel the love when I come in here, it is like a big ball of light!" I think she herself was surprised by her wording. We all just nodded, knowing how strong the currents of love, joy and gratitude have been.

In speech therapy Chester was asked to list as many countries as possible in one minute. His response was "what continent?". He then proceeded to name dozens of countries on four continents, mostly in order of geographic proximity. The speech therapist was stunned and amused.

Today we spoke about teaching, and how eager he is to get back to teaching. He is very upset that he "may not" be teaching the Breath Intensive next week. I have assured him that as soon as he is ready, he will teach in class. And he is always Teaching, always exploring, always experiencing. He is confident that he will be able to hold more classes, and I look forward to being there! As we were singing today in speech therapy, "the best is yet to come!"

One of Chester's primary elements of touch is relaxed hand touch. He often touches with one hand soft and relaxed and listening, and the other hand creating movement, pressure, vibration, waves, etc. He is now finding himself with his right hand totally relaxed and highly sensitive and his left hand with his strength and dexterity. Today he explored giving touch with this combination. He is happily realizing that while it may look different, he may not be "disabled" at all. His touch and presence are more profound than ever. AND he STILL gets the right to "make fun of able-bodied people," which he is delighting in at every opportunity.

Today Chester declared that he is "persisting in being exquisitely alive." I thanked him for all of the amazing work he has done this week. His biggest motivation in recovering language and independant movement is so he can return to his classrooms, his massage table, his home, and continue to con-spire with us all.

I walk in gratitude, and rest in peace, knowing that Chester is continuing to inspire and exhale.

A Bsti's Story

Hi all,
Well, if you have spent any time with Chester since he has know me, you would have surely heard the story of his 'handicapped' act that he has done to torture me. He started this in November of 1996, I remember the date clearly... Well not the date, but the month and year. What he did was to start dragging one leg, twist his body, pull his arms up in a foreshortened way, and chase after me as if I was running away from him. He would call out after me, "Marwyn, why u wun away, I wuv u." Now, it has to be understood that I have a handicapped brother, and when he first pulled this stunt, I was really torn in two different directions. One was that you don't make fun of people who are handicapped... I had seen too much suffering in that regard. But the other was that it was really funny. So it did make me want to run away from him, and so he would chase after me. And he realized that he was pushing some really easy buttons and getting a grand reaction out of me.

Now the first time he did this was up at Wildwood, away from people who did not know him and his bsti's. But then he started doing this walking down the streets of San Francisco, Oakland and Berkeley... Or anywhere else where he might catch me off guard. So we come to today. I arrived this morning and he wanted to go out onto the roof garden they have at the hospital. It was really nice. And just as I had taken a big drink of my latte (which I was sharing with him) he goes into his handicapped act again! Sitting there in the wheelchair! And I nearly blew a latte out my nose. I think we laughed for five minutes, 3 of those with me trying to stop long enough to swallow what was in my mouth.

So I just want to let you know that he is getting back to his old self in a lot of ways. He worked really hard today, and laughed really hard too!

Love to all, Marilyn

Photo Project and a Late Update

I wrote this last night, but was not able to post here to the blog until today. The photo project is NOT for his birthday. It would have been nice to have it for that, but I didn't think of it in time. One thing I have learned by watching Chester recover is to take things one step at a time. So first step is to get those photos to me... please. Here is my writing from yesterday:

The Project

First of all - my project. I want to talk about this first so that the information regarding Cheeky One does not put it out of your mind. I'd like to do a collage of photos of those of you who are supporting him 'out there.' Those of us 'in here' will also be on it, but I would like to give him a visual of all the folks praying/thinking/sending healing energy/and doing all kinds of wuwu for him. It would also give you a way of 'being here' with him. I'm going to give you a week to get your photos to me. Send cyberspace or snail-mail. I have specific needs:

• It must be a close up so he can see your face: see his photo from '96 at the top of the blog to give you and idea of what I need. If it's too small, he won't be able to see it, and I won't be able to enlarge it, unless it's digital which can be enlarged (and sufficient resolution). If it's too small I will not use it.


• I will not be able to return any photos.


• Please put your name with the photo: either on the back if you mail it, or in the e-mail when you cyber it.


• If you email it, please send as an attachment: my server has a difficult time with some pictures that are sent in the body of the text. I want to get it, and I will if its an attachment.

The photos in the collage will encircle him. The size of the collage will depend on the size of a room he will have at Herrick Hospital, where he will be doing his rehabilitation.

I'm going to have him in the middle, and I'm going to only change his photo.... I'll use the one I took today, and then take one next week, etc., as he gets better, his photo will change. So that is my project.

My address is:

Marilyn Gugel
1710 6th Ave, Apt. #1
Oakland, CA 94606

You can email me here.

The Update

Now for a quick update:

Members of Chester's "Primary Team": (L-R) Marilyn, Chrys, Xo, & Jaime; plus Chester, of course.

Here in the US it's a national holiday.... Labor Day... and boy did I see 'our boy' labor today. As I walked in the room to visit this afternoon, he was moving himself around in a wheelchair, and promptly got himself into bed (with very slight help from Xo..) I saw him get himself into bed last Friday, and the difference in just the weekend was astounding. I told him so, and he did not believe me at first, thought I was joking. On Friday, he needed someone to help hold his body as he maneuvered his feet and legs into a sitting position. Today Xo only held his arm... I think... he was there and it was mostly moral support rather than physical support. He moved a lot more quickly, and was able to twist his body gracefully into a sitting position. He did kind of plop when he sat down, but hey, so do I!

Two beautiful bouquets: the purple on the left from Paul Frantz, and the lighter on the right from Chester's sister, Misty.

He is much more in charge of his own care now also... I noticed some of that on Friday, but really noticed it more today. He did dictate the visiting policy... he was very clear on what he wanted to say regarding people coming to visit. Please read carefully when it is posted on the blog (it's posted below, and there's a link at right). He will be moved soon, they say, and he is calling it Boot Camp, but Chrys said "Butt Camp," I think because he will be working his butt off (so to speak).

More later, I'm sure. Thanks for any help with the project. Jay, this does not supersede your request for photos and I'll work on that tomorrow. I don't have my camera hook-up for the computer with me, or I'd show you how he looked today. More tomorrow.

Love, laughter, and a bunch of wuwu back to you. I do feel your support for those of us who are in closer proximity to Chester.

Love, Marilyn

P.S. from Jay: I added a new photo to Marilyn's post from Friday. Check it out!

On Recovery - Chopsticks and Tangos

Chrys sent me the following on Friday from her visit on Thursday. This is my first opportunity to post it. I may move it to its proper chronological place after a few days, leaving it at the top for now so it is read by all. What a wonderful post!

-Jay

Dear Friends,

Thursday was a wonderful and long day for Chester. I intended to send you all an update as soon a I got home from the hospital, but I headed straight for bed. I'll take a few moments this morning to share yesterday with you all before I head in today.

Me with Chester.

First, allow an introduction. My name is Chrys Curtis-Fawley and I have been a dedicated student of Chester, and more recently his co-teacher. Teaching with him this summer, I was able to be with him each day and witnessed the process of the tumor's effect on his body and speech. Chester was able to stay deeply embodied and aware each day, constantly meeting his own new edges with presence and breath. I have been with him every day at the hospital, offering general assistance for all aspects of hospital living and offering support in his rehabilitation processes.

Yesterday I arrived at 10 am and found Chester asleep. His color and energy were beautiful, and together we rested for another half hour. When he awoke and saw me, his eyes lit up and he said "look!" and waved his right foot at me. Movement was coming back into the leg! We explored his movement, and noticed that it was initiated mostly from the hip joint, but that the muscles were beginning to respond and flex. We explored his right arm and found less movement but strong circulation.

Thus began an amazing day of good news and rehab. Below, the highlights:

9 am: His doctor had visited him early in the morning and said the post-op MRI looked excellent. In Chester's words, Dr. Tang said the "whole tumor gone", and there was no indication of permanent paralysis in his right side. Chester was clearly motivated by this news, and eagerly began the work of waking up his right limbs.

10:30 am: Chester wags his foot with gusto.

Chester's beautiful head just moments after they removed the bandages. We were all entranced by the gracefuless of the wound, and the scalp staples.

10:45: The surgical bandages come off. We reflect on the marvel of such a big operation leaving such a small wound, and take in the sight of a head held together with staples. I send the whole operating team a prayer of thanks for their skill and training. I am amazed at what human beings can do.

11:00 am: Another nap. I offer supporting touch as he sleeps, and find an enormous amount of energy circulating. I especially notice his right side, and see the muscles quivering with the breath. I sit in awe at the sight of limbs slowly coming into movement.

Noon: Physical rehab with two delightful women. They assist Chester in sitting up in bed, and then are delighted when he wants to stand and sit in a chair. He charms them with his dancer's grace and they remark in how much strength, stability, and movement he has, less than 36 hours post-op.

Chester sitting up in a chair for the first time post-op. He felt strong and stable sitting up, and it allowed his spine and neck to realign a bit. Here, he is with his house-mate and friend Jaime.

Chester is in an intense process of reclaiming speech. His hands and breath are central to his communication. We take each syllable at a time, and often repeat words over and over until they come more easily.

1:00 pm: Speech and Swallowing therapy. Again, delight and surprise at the overnight improvements. Chester gracefully eats his entire hospital lunch and then digs into a big bowl of melon. He has requested chopsticks for today's meals. Speech therapy was uplifting. When asked to list as many animals as possible in one minute, Chester laughs and then begins: "Zebra, Raccoon, Octopus, Squid, Mussels, Black Panther..." The beasties were called in!

2-6 pm: Continued rehabilitation exercises. Chester moves through beautiful cycles of breathing, trying out his speech, and exploring the range of movement in his body. We practice saying many words, one syllable at a time, and repeating until they flow freely. We stretch his limbs in bed and use massage and air-compression leg wraps to keep his circulation up. His spirits are soaring, and he punctuates all of his hard work with restorative naps.

6:30 pm: Sitting again on the side of the bed. Chester begins moving and singing. We play with rhythm and soon are dancing a little "hospital bed shuffle." Chester requests music for today's tangos.

His view from the ICU.

8:30 pm: After watching the sunset over the Bay from his bed in the Intensive Care Unit, the wonderful nurse tells us that a bed in a shared room is available. Chester is very relieved, as the intense sound and energy of the ICU was disrupting his rest, and I was spending a lot of my energy creating a bubble of peacefulness for him to sleep. He moves to a wheelchair and we go to a room down the hall. I am annoyed that his roommate has the TV on, but Chester assures me that the noise is nothing compared to the ICU, and I pause, listen, and nod. I am reminded that many patients have only the TV as company. He settles into his new bed. We breathe together. I leave him for the night, and another hospital angel stays to be with him until he fall asleep.

9:30 pm: I leave the hospital with an enormous sense of joy. Chester continues to amaze me in his level of embodiment and his boundless curiosity. His spirits and humor were soaring, as he reveled in the delights of being alive: in moving our bones and muscles, in forming words and phrases, in breath and touch, in the taste of golden watermelon and lemon tea. Chester, my dear friend and master teacher, is so very much alive. I cry, knowing he will continue to explore and teach for many days to come.

And now it is Friday morning, and I am ready to go back for day three. I take with me all of the love, prayers, and support that are being sent this way from all over the world. I bring with me the knowledge that I am sitting with one of the most important spiritual teachers of our time. I pack my bags full of colors, smells, textures and tastes for Chester, and am eager to see what he discovers today.

Much love to you all. Please continue to hold Chester in your hearts and know that he is bringing all of himself into his rehabilitation process and the result is wondrous indeed.

In breath,

Chrys

Chester's Instructions

Hello everyone,

What a wonderful day this has been. Seeing Chester so bright and spry. When I came today he was working with the speech therapist. He is doing very well, better than they expected. We keep hearing that statement. Although he is not back to his 'old' self, and may never be, the 'new' self is working very hard to recover from the past week, and even from the last couple of months.

He still does not have control of his right leg, and can not go home until he does. He will be moved to Herrick Campus, a part of Alta Bates Hospital where all rehabilitation happens, and the Physical, Occupational, and Speech therapies will be continued there. We expect the move to happen sometime next week. We have to take everything one step at a time, and those of you who would like time lines, well, we just don't have them. Its a day to day movement at this point.

There was a bit of juggling of rooms today. He was sharing the room, and the other fellow had the window. He was discharged, and we moved Chester to the window position, only to have the nurses come and tell him he had to move to another room, and not to the window position. They needed his room for women patients, and would not allow men and women to share the same room. The nurse was very apological, but it was a huge disappointment. He was promised that he will get the first window position that becomes available.

The other information that I wish to impart was the terms that the speech therapist gave us today. His brain is dealing with two things: Apraxia and Aphasia. He is having a hard time with some of the simple things... ABC's, months of the year, counting. And at other times, there is no problem at all. When the speech therapist picked up a pen and asked him what it was, he said a word that was not pen. He wrote it down... and it seemed that it was pen in Russian... he realized that he came up with pen in Russian. Russian and Danish are his second languages. The brain is so amazing.

So Chester is working very hard with all his therapies. It exhausts him. I made a list of words for him to remember when he gets frustrated. Wait, pause, breathe, and slow down. Its up on the wall as a reminder.

Marilyn's instructions for Chester, posted on the wall as a reminder.

He is not taking calls and he is not allowing visitors. I know that many of you would like to visit, but he just can not deal with so much activity, and trying to speak and explain things to yet another person. He wants to respond to people, and he just needs to pay attention to himself. Your continued prayers/healing energy/ and other wuwu stuff is still having a profound effect on his amazing recovery. Please keep it up. I know his recovery is beyond expectations because of your presence in his life... and that tether that you have going to him.

I'm off to work for two days. Others will keep you posted, and if not, I will do so on Monday.

Peace and Love to you All, Marilyn

Links:

• Aphasia Fact Sheet, includes detailed information (thank you Barbara!)


• Aphasia (same link as in text above), a briefer definition from http://www.answers.com/ (an excellent resource).


• Apraxia, ditto.

Yet More Pictures...

Thom P send me the following message:

Jay,

I took pictures during the most recent massage class Chester taught at Body Electric. Many are posted at here.

You're welcome to pass on this link to anyone who wants to see them.

I've carried a picture around of him all week next to my heart.

Thom

These pictures are pretty amazing. I find that, with experiencing Chester work with my body for several years, mostly years ago, I can feel in my body exactly what he's doing, just looking at these pictures!

Thanks, Thom!

Link: http://healinghands.myphotoalbum.com/view_album.php?set_albumName=album02