APRIL 8, 1-5: A Body Prayer Circle for Chester Mainard

For the Love of the Flesh,
In Praise of the Spirit,
and In Memory of Our Friend

May the communities of Chester Michael Mainard
gather on April 8 at 1pm
to fill the legendary classroom at 4920 Telegraph Ave in Oakland
with our breath, love and gratitude.

Come share gifts of hugs, stories and songs with us.
Altar items and memorials welcome for our group altar.
Potluck food encouraged- Chester's favorites are especially welcomed (which is a pretty big category- from sushi to melons, spring rolls to cookies, Chester relished so many tastes, and so shall we!)
As always in this sacred space, your full emotions and experiences are honored.
If you are unable to join us in person, please feel free to create your own memorial to honor your expression for Chester's life and passing.

Any questions please contact Chrys directly: openhands@mac.com

On the road

Dear Family, Lovers & Friends of Chester,

I have enjoyed hearing the many ways that "Pester" has been visiting us. I am praying that his healing light continues to comfort us all as deal with the many ways that our grief has impacted us.

I am on the road back home after almost a month away. Chrys continues to gather plans for another celebration of Chester's life in California in the coming weeks. I will let her post the details as they unfold. Many of you have asked about the pictures gathered for his celebration in Missouri. Once I get home, I will put together a slide show for the web and post the link here on the blog. Look for it sometime this weekend.

In loving, calming breath,

Bean

PS Dawn had asked me to let others know about another opportunity for others to share their thoughts and memories about Chester. My apologies for not informing you until now. There is a guestbook at http://www.legacy.com/Link.asp?I=GB000086801047

Saturday Memorial in Missouri

Aloha, All:

Bill here, blogging for Bean, who has asked me to report on yesterday's Missouri Memorial for our Chester.

I arrived at brother Dan's house at about 4 PM on Friday to be met by Chester's dad Chet and his wife, Teri. To my surprise, I was greeted as "someone we already feel we know" because "Mikey" had talked so much about me. At any rate I felt immediately welcome and "a part of the family." Bean was in bed sleeping, in part because of the sheer exhaustion of caring for Chester in the final days and partly because she had caught pneumonia. I opted to take a shower and a nap (having worked a full day before hopping on a plane in Maui, then via San Francisco and Denver on my way to Kansas City. Before napping, Chester's sister Misty arrived and I was able to say hello to her. I felt that her greeting was a bit chilly and wondered about this. I am told that after I went to sleep, Dan had arrived home and there was an apparently ongoing argument that ended with Dan asking her to leave. I was later told that the argument was about issues surrounding Chester's last days here -- and to my way of thinking, entirely the sort of thing that families go through at such a time when emotions are running high. Sad that such stresses often keep us apart when we most need each other.

Saturday was cold and gray, with even a few snow flurries. (Not the sort of weather I prefer, that is for sure). After several hours of gathering up everything we headed off to the Johnson County Fair Grounds -- and a really very nice hall with a great kitchen. We were greeted by friends from Nancy's work place (who were helping with the food) and three arrangements on the main table -- one from Body Electric (potted spring flowers and orchids in a moss covered wire basket, one from Barbara and one from Chester's "Showtime Family." We hurried to set up the computer with a slideshow of pictures from different stages of his life (Bean will revise the slideshow for the web and post it soon) and his beloved Ipod was playing some of his favorite songs. We set up a card table covered with Bean's sarong and selected items from Chester's altar lit by candles and many, many pictures of Chester at all phases of his life. And fluttering around the perimeter of the room we hung the prayer flags that had adorned Chester's room. This along with some helium balloons (We'll Miss You) transformed an otherwise stark white space into the kind of environment Chester loved and in which he thrived!

While the food was still being set out (including deep fried turkey done by Dan that morning), people from this area began to arrive. These were mostly relatives, but there were also a few people who remembered Chester from High School, or from some other youthful activity such as his Boy Scout Troop. A few have followed Chester's story on the Blog, but most were of a generation not accustomed to these "newfangled" ways. The most common comment was "I knew Michael (Chester) when he was young, but after seeing the pictures I wish I had known him as an adult."

True to the "party atmosphere" favored by our Chester, food was the main event of the day and there was lots -- all kinds of typical Midwestern side dishes were brought by the attendees to complement the turkey and ham. No one left hungry. When all had eaten and everyone was visiting around the tables, Dan spoke a few words in remembrance of his brother -- heart-felt if brief. Chester's Dad Chet had wanted to say something as well, but felt too choked up to manage it. Bean said a few words and then played as song used often by Chester in his teaching (Heaven Down Here by Tuck and Patti). And then it was over.

We packed away the food and the pictures and the mementos. Bean had made a wonderful printed "program" which quotes 2 verses from one of Chester's favorite Rumi poems:

Today, like every other day, we wake up empty and frightened.
Don't open the door to the study and begin reading. Take down a musical instrument.
Let the beauty we love be what we do.
There are hundreds of ways to kneel and kiss the ground.

The breeze at dawn has secrets to tell you.
Don't go back to sleep.
You must ask for what you really want.
Don't go back to sleep.
People are going back and forth across the doorsill where the two worlds touch.
The door is round and open.
Don't go back to sleep . . .
We were back at Dan's by 5 PM and, I think, all of us hit by a certain "finality." Chet recounted that as they were getting out of the car the balloons "took off toward California all on their own." ("We Will Miss You" ... floating higher and higher into the sky).

Today, we are all resting, eating, reminiscing and resting again (Bean has slept nearly 20 hours!). This is certainly not the end of our Chester. But, he will not be with us in the same familiar manner that was his special touch.

Aloha nui loa,
Bill

Mainard Timeline?

I had friends at the Missouri memorial today, who tried to fill me in on events. (Others who were present will post more about that later.) But some of the details are getting a bit mixed up in the retelling of the saga of his life. I thought that the blog might be a good vehicle for sorting some of this stuff out, & reconstructing a time-line. People on this blog have probably been direct witnesses to some of the events of his life, & we can kind of straighten out details together.

He was born Chester Michael, on September 8, 1953, I believe. Since his father & grandfather were both also Chester Mainards, he went by Mike or Michael through school in Oak Grove, MO. We graduated from Oak Grove High School in 1971.

We both went to the University of Missouri-Columbia, from which I graduated in 1975, but Michael left school our junior year, it seems to me. (He was going through a lot of stuff.)

Those of you who knew Chester, or even Erik, might have trouble recognizing the Michael I first knew. He was an Eagle Scout (hand to God! I was at the ceremony & saw Blondie pin the pin on him with my own two eyes!), & in college he joined Naval ROTC. (His ROTC commander practically WEPT when he left the university!) His leaving the university was a major break -- a major change in the way he defined himself -- a time of major upheaval.

After he left school, he went over to Israel to live on a kibbutz. He was something of a seeker in those days, & at one point talked about possibly converting to Judaism. But once in Israel, he found himself far more sympathetic with the Muslim underdogs, & he ended up cutting his stay short.

Now, somebody stated at the memorial that one of his wives was Israeli, but that is not so. He had been writing to a Danish penpal named Anne-Lise Sogaard for several years. (I think since high school.) When he commented to her in a letter that he was leaving Israel, she invited him to stop in Denmark on the way home to the States, & he decided to do that. He wanted to stay & explore Denmark for a while, but he had no money. My impression at the time was that he married Lise so he could live & work in Denmark for a while, & so she could come to the States with him for a while afterwards, & they had agreed to marry on that basis. But you know how that turned out -- she wanted to stay married... Things got a bit ticklish later. (Among other things, I had sent him an urgent aerogram to Denmark telling him not to marry her -- which he had already done -- so she figured I was the enemy. But we EVENTUALLY became good friends, & corresponded for some years after her return to Denmark...)

I remember serving Michael & Lise an INSANELY spicy pot of chili in an apartment I had in the summer of 1975, when I was finishing college with a single summer term. So they were already married & back in the states by then. They both got jobs in Columbia, MO at a school for the retarded (that's what we called it back in the dark ages) -- which is where Michael first learned sign so he could work with deaf children at the school. But they separated in late 75 or early 76, because he was single in that time frame... He was still living in Columbia, Missouri in October of '76, when my youngest sister died, because he was the one who drove me back to Columbia after the funeral.

It was also some time in the mid to late 70s that he became Erik. He was plagued by the fact that Michael was a common name, & wherever he went, there were other Michaels. One year, in his college dorm there were something like 6 other Michael's on the floor...

Anyway, at one point, he was applying for a job, & the interviewer told him, "Look, we would really like to hire you, but we already have 2 (3?) other Michaels here -- is there something else we could call you?" He christened himself Erik to get the job. (I was trying to remember what Lise called him, but I didn't spend much time with them when they were together -- that enemy thing. And after they broke up, she always referred to him as Michael -- because I did?)

Erik moved to Wisconsin, but I am not good at remembering dates. I think it was probably early in 1977. (Anybody out there remember?) It seems to me that I drove up to Wisconsin to visit him with 2 friends of mine, & my best recollection was that that would have been spring in 1977. The visit was not a huge success, & we had a quarrel by mail, & did not speak for a while. (Again, he was going through a lot of changes.) I moved to Excelsior Springs, MO in late 77, & Michael/Erik called & was going to come visit me so we could renegotiate our friendship. But as luck would have it, a bad blizzard blew in, & Michael had to call & cancel that meeting, because he had to drive from Oak Grove to WIsconsin in the blizzard...

We both went through a lot of address changes after that, & lost track of each other. (Didn't help that I married & changed my name, or that I had no relatives left in Oak Grove.)

I know that at some point, he married again. All I know about his second wife was that she was Danish, too, because he joked to me that of all the people he had known, & all the places he had been, wasn't it odd that both his wives had been Danish? But I don't know her name, or where or when he married her. And when I asked him about it (while we were busy rebuilding our friendship) he didn't answer. (We had so much catching up to do that we missed some bits. Anybody know his second wife?) But neither of his wives were Israeli, & the wife he brought back from the Israel trip was definitely Danish, & he told me that his second wife was Danish, too.

I finally tracked him down through his grandmother, Gracie, when a mutual friend of ours was dying in the mid-80s.

It must have been in the Wisconsin years that he took up dancing, finished his bachelor's degree, got a Masters in counseling, started doing massage work & work for the medical school, but the telling of it to me was all kind of jumbled up & out of sequence. I would love for somebody to help me sort this stuff out. Does anybody remember dates or details?

I know that he started traveling to teach while he was still living in Wisconsin, but he kept his home in Wisconsin until it just seemed silly for it to be empty more often than he was there. At that point, my address in Sumner, WA became his mailing address. He left me a big stack of signed checks, so I could pay his bills, & I would email him wherever he was so he could tell me how much to pay on things like credit cards (where there was actually a choice in the matter.) We have lived at this address for 14 years or so, but I can't remember the exact duration of his using our home as his base. (He told me at the time that people were horrified he would trust me with signed checks, & we both laughed about it.

By the way -- I want full credit. I am the one who bullied him into getting email. He kept asking me why he would possibly need email, & I finally gave him one of our email addresses (we were on Prodigy, & had 5 addresses -- so I cheated.) During his gypsy years, he started demanding that everybody else get email, & his laptop computer became his link to many of us, no matter where he went... He joked that he was prosyletizing others as earnestly as I had prosyletized him.

The gypsy years were lovely for me, because I was homeschooling a young child, & didn't get out much, but Michael was sharing his adventures with me almost every day. (During intense patches, we sometimes emailed 2 or 3 times a day.) Once he settled down & had more of a regular life, he was busier & we didn't correspond quite as much.

I don't really remember the exact date he settled in Oakland, or the exact time he became Chester. I know that my son first knew him as Erik in the late 80s. And I know that just about the time I was able to switch from Michael to Erik, he decided he was Chester... (That's when I started addressing my emails to him "Dear You." Any of you who helped him by reading his email when he was having trouble reading, that's why the ones from me were always addressed that way.)

So help me fill in some of the details. My guess is that the Erik/Wisconsin years will be the least represented at either memorial, so the folks who know him from that period, in particular, need to keep us from messing up...

Recognition and gratitude

I want to express my appreciation for the kind words and gratitude that many have expressed to me in the blog comments, emails and phone. I am incredibly honored to have been with Chester as he passed and off and on through the last year and half but there are so many others that held him, supported him and loved him as he dealt with this illness.

I especially want to recognize the tremendous effort that his dear family expended in their promise to keep Chester at home. For six months, he lived with his brother and sister-in-law. They were the ones that fed him Dan's excellent cooking, got him dressed in the morning and got up with him at all hours of night to meet his needs. His sister Dawn, provided comfort, giggles and assistance during the day while Dan & Nancy were at work. It was Dawn that continued his hydrotherapy as long as he was able. She also took over the numerous details required of his care. His momma provide more laughter, delicious food and the incredible power of "momma Kisses". His step mother Teri and his dad drove up to provide much needed respite for days at a time. They provided lots of warm embraces, more of his favorite dishes, entertainment, support and safety for Chester. Caring for Chester was joyous, frustrating, fulfilling and exhausting work. I am just glad that I was able to help them out towards the end. Here is to all of the family and friends from near and far that lent their love, support, time and energy in caring for the cheeky one!

Musical Memories

Throughout the day, I have been listening to Chester's music, trying to put together the music for the Celebration of his life to be held in Missouri on Saturday. Although I felt his spirit pass from this room with his final breath on Tuesday night, I am warmly embraced by his presence as I sit as his computer, listening to the music that he loved. So many memories are wrapped in the music, from doing our morning ABBAloutions in Oakland to crying together over the Mission soundtrack the day before he died to hearing Heaven Down Here while receiving loving massage, the post-Big Draw bliss listening to 1492, to the excitement he had in sharing the Wheelchair Blues with his friends, to his valiant attempts to turn me on to opera while I fixed his dinners. Over the years, we experienced and shared so much through music: the good, the bad and the blissful. When he was still able to manage his computer, he would make me up CD compilations to celebrate our memories and to continually introduce me to the music that moved him so. Selecting songs is an overwhelming in terms of how many songs moved him but also feels very reassuring and joyous. It has been very much of a healing task for me. I feel very grateful and just enveloped in his love and light.

A Prayer to the Unknown

My dear friends, please breath with me. May we send winds of love around the globe, from breath to breath, lung to lung, heart to heart of all of Chester's beloveds all around the world. May we sip the sweet air and know we are home.

3-13 strikes me as the right, witchy, virgo date for the completion of Chester's transformative journey. I was feeling it in my bones all day, and was moving towards a closing ritual with him when Bean called and asked me to speak to Chester through the phone, which she lovingly held to his ear. Breathing through the overwhelm, the "what could I possibly say" panic, I had my lover hold my heart and my pelvic floor as I tapped into my communication with dear Chester.

I told Chester that I loved him, that I was walking strong with his teachings in my bones and flesh, and that I promised to carry his lineage. I then reminded him of one of themes of his teachings- the Big Draw, and that he used to speak of it as a "prayer to the unknown." I invited him to breathe his last breaths as a prayer to the unknown.

I do not feign to understand the inner workings of our great spiraling spirit, the journey of the soul, the relationship between those of us breathing and those of us simply in-spiring. But last night, after falling asleep in my partners arms, I dreamt of Chester, flying free on the winds, dancing in the great open air, laughing.

I have been holding Chester close to my heart and loin, standing with him at the gates, for over a year and a half. Now, with hands open wide, heart full of reverence and belly round with gratitude, I move into this new relationship with Chester, and stream love to each of you whose life was massaged by his presence here on earth. May we truly walk, in love, with the lessons we learned at his side.

I will be calling for a gathering of his San Francisco Bay area friends and family, a circle of breath and reverent honoring. During our time together this past year, Chester and I spoke many times of his wishes for a memorial, and I will do my best to honor his vision. Please visit the blog in the next few days for date, time and location details. If you want to assist me in creating such a gathering, please email me at openhands@mac.com.

Dear friends, please breath with me. May we each feel and know our home in this world, remembering that we are of this earth. May we each offer up a prayer to the unknown, and welcome in the possibility of our next breath.

Missouri Memorial

There will be a celebration of Chester's life on Saturday, March 17th 11:30-3pm at the Johnson County Fairgrounds Rural Youth Center, 386 NW 145, Warrensburg, MO 64093.

I am helping the family gather pictures for the celebration, but I have very little access here of photos of Chester during his traveling and teaching days. If you have photos of Chester that you would like to share with his friends and family, we would be grateful if you emailed them to bean.fairbanks@gmail.com.

We have greatly appreciated your stories of your personal rituals and experiences in acknowledging Chester's passing. They have lightened our moods, made us smile and provided opportunity to share tears. Thank you.

I guess I thought I was prepared -- but I guess you are never prepared. It has been a strange morning...

A while back, I was passing a display of inexpensive (OK, CHEAP!) jewelry on sale at a local store, & a little dragonfly necklace caught my eye. it is a very simple silver dragonfly, with cubic zirconia wings. I thought of Chester/Michael/Erik's dragonfly healer totem, & I had to have the necklace. Somehow it just seemed so appropriate -- a dragonfly turned into a creature of light. Unbeknownst to me, it was a choker -- which I wouldn't normally buy. It has one of those adjustable chains in back -- the kind where the unused length of chain hangs down your back -- & the dragonfly is set into the chain in such a way that you cannot slide it along the chain. So naturally, every time I wear it, the dragonfly flitters over to perch over my left collarbone. Didn't that just figure? (I really need to take this sucker off the chain & reset it in something where it will stay put!) I joked with him that anything representing him would have to be off-center.

Last night, after I got The Call, I was fingering the dragonfly & pulling it back to the center of my throat, & I had a sudden flash of memory, from a time probably 38 years or so ago. I was wearing a necklace, & the clasp had worked around to the front, & 15-year-old Michael asked me if he could adjust it because it was driving him nuts. I don't know if he persisted with that obsession, but when we were in high school, he really had a problem with lopsided necklaces & exposed clasps, & he was always asking girls if he could adjust their necklaces. (I can even remember a time when he didn't feel that he knew a woman well enough to ask, but I could see him obsessing because her necklace was cattywampus.)

This morning, when I got up & stumbled into the bathroom, the dragonfly was perfectly centered on my throat, & I really got the giggles!

Into the light

Chester passed peacefully into the light at 11:22pm. During his goodbye with Chrys on the phone, Chester grabbed my hand and pulled it to his chest. He had some episodes of fear and spasms during the evening and then slipped into a coma, still clinging my hand to my chest. He slipped into Cheyne-Stokes breathing, which probably meant that the pressure was building in his head. Once Nancy got home and family members were called, his breathing changed again and his blood pressure plummeted. Alone in his room, I quietly crawled into his bed. I laid his head on my breasts, held our hands over his heart and he took one final breath.

They have just taken away his body and we are crawling off for some much needed sleep. I will post more tomorrow.

Healthy Chester

I have been thinking of the name I gave this project, "Healthy Chester," when I set up the blog and later the site. It represented what I teach: to focus on what you want, not what you don't want.

Now that it is quite clear that Chester will not be returned to the vision of physical, corporeal health that I desired from the beginning (even with a slight Buddha belly :o} ), I've wondered what the name now means. In the larger context, I know that Chester is quite healthy: his spirit has not been damaged one iota from this experience, and has perhaps been purified further. He has always shone brightly, and I know that will continue once he leaves this form.

Chester's light is one of the primary forces that has led me to the place I am right now: healthy, happy, growing. I know he has done this for many people reading this blog. So in my mind I'm transforming the name "Healthy Chester" to mean peaceful transition, when he will be restored to full health.

I send thoughts and prayers for peace to Chester continuously. Thank you for the request, Bean.

Relief or how we made peace with valium

Last night was one of my most difficult in caring for Chester. As we struggled to make him comfortable, he seemed to look like he felt betrayed, I am the one that was supposed to make him comfortable but wasn't holding my end of the bargain and I was so frustrated that I couldn't.
He has hated to take medications that make him drowsy and out of it. He really HATED that I had to stick an eyedropper of medication in his mouth. It was a decision that we had to make as his spasms had his limbs banging against the side rails and he was thrashing like a fish out of water. I had to increase the dose gradually until it was doubled his liquid Valium and morphine. That dose allows him to rest comfortably about 3 1/2 to 4 hours at a time. Although it was a double dose for Chester it is still half of the maximum prescribed dose. He is relatively sedated, and he talks, sings and giggles in his sleep. I can wake him but he is quite drowsy and eager to return to his dreams. After the second dose, he added the phrase "thank you" to his repertoire. He still hates the eyedropper, but when I ask him if he is ready for his next dose, he opens his mouth.

1,2,3,4 what are we fighting for?

Yesterday afternoon, Chester's breathing became very slow and irregular. His vision dimmed to shapes and shadows. We had to identify ourselves because he could no longer recognize us by sight. He called people to his bedside for some quiet loving. When his niece Raina arrived from the airport, he wanted everyone in his room, and he wanted to sit up so he could give everybody good hugs. A couple of hours later, he started talking about the lights and the "beautiful beings". He repeated "good bye" and those in his room were able to say good bye as his breathing slowed even more. Then he rolled on his side and pointed, stating "moonshine, moonbright and moonpies". His breathing picked up and he became slightly agitated. For whatever reason, he turned back.

Since then he has been unable to sleep for more than a few minutes at a time. We were up all night, sitting up, laying down, rolling over, repeat. Everytime he started to drift ot sleep, he would rustle himself awake. He sang and counted to keep himself awake. His favorite song has switched from "Good Vibrations" to "1,2,3,4, What are we fighting for". He would ask for "pillows" and I would crawl up and lie across the head of his bed so he could nestle his head in my bosom and we would hold hands over his chest. He could let the words fall away then, but still wouldn't fall asleep. At one point he reached up with his good hand and grabbed my nipple hard. My yelp and his hysterical laughter made sure that neither one of us even began to drift to sleep for awhile. Unfortunately, the two of us do not fit well in a single hospital bed and I would have to crawl back to the cot next to his bed to rest my back and legs. He can no longer swallow any of his pills and I couldn't get liquid pain killers over the weekend here. We were back to the oxycodone, that this time I was crushing up and spooning under his tongue, trying to stay on top of his pain. Finally about 10am, I was able to make him comfortable enough to relax, if not sleep. We have liquid morphine now and I got permission to use the valium if he becomes so anxious again that he is literally crawling out of bed again.

It is so frustrating and heart breaking, on my part, to see him so close to a peaceful release yesterday and now he struggles with pain and appears frightened to really fall asleep. The increase in spasms both hurt and frighten him and as more days go by without him being able to swallow his medications, the spasms will continue to increase. What are we fighting for? I don't know what made him turn back. I don't know how to give him real comfort. I can put lotion on his back, I can soothe his brow, I can adjust the pillows under his legs, change his bandages and hold his hand but it seems so small in comparison. I feel inadequate in supporting him in whatever it is he feels he has left to do. So, I am sending out a prayer/thought/breath/light/meditation request to all of you who have basked in his light to help send him on to the bigger light that waits to welcome him when he is ready.
PS Chester had another brief seizure while I was previewing this blog post.

Happiness = Poop

Chester woke up this morning in a great mood. He was in the mood for a party and kept repeating "party" over and over again. He couldn't wait for me to go out and get party hats. Of course, I had to get him a tiara!

When I returned from the store however, it became apparent that we were going to have to treat his constipation pronto. He had been refusing a laxative, but now his belly was so distended that it was beginning to impact his breathing while lying down. I made a truly delectable concoction of Milk of Magnesia, Karo syrup and prune juice, all mixed up and served "coffee hot" per hospice instructions. It has been many years since I had inflicted that mixture on a patient. Chester actually did a great job getting that down but no way was he going to trust me that I was actually just giving him a water chaser. His step mom has to convince him that I was done picking on him and that it really was just water. He would take it from her hand but no way from me. He had a delightful time teasing us and I was able to give him a nice long sponge bath while he sat on the commode. He totally luxoriated in the massage/bath. We wrapped him a sheet around his shoulders to keep him warm and he was told it was his prayer shawl. He immediately burst into Ommmmmmmmm. We teased about mudras yesterday and omm today, which spiritual practice would he take on tomorrow? He sang to us his new favorite tune, good vibration. "Good vibration" has been the phrase he has been using the last couple of days when he is most pleased. Finally pooping and releasing that pressure was definitely worthy of lots of "good vibrations"!

After the laxative did its work, Chester had another seizure when transferring back to his bed. It took three of us to get him into the bed. He came around once I administered oxygen and valium under his tongue. He has been sleeping soundly since then. I can wake him up and he will look at me, but I couldn't get him awake enough that I felt comfortable giving him his non-essential bedtime pills. A big part of his drowsiness is the valium, but it is also another sign of how things are changing. I am keeping him on the oxygen through the night. Chester did not get up into his wheelchair today. He did not eat today except for some snacking on fruit. We have noticed that he smells different and there has been some minor bleeding. Even with these rather omnious signs, Chester sang, laughed, joked, and cuddled throughout the day. His niece will be in town tomorrow and he looking forward to his postponed party. He seems to be in a place of real acceptance and even joy.

Bright and Shining Light

Hello everyone,
There were two things that I kept telling Chester while I was visiting there, that I insisted he was to remember: that he was loved by many (especially me of course); and that he was a Bright and Shining Light. I reminded him that he was a Bright Light in the Darkness, no matter the condition of his body. I would do this as he was laying down for a nap or for the night, especially when he seemed depressed about his condition, or about the dysfunction of his body that day. It always seemed to comfort him. Bean's post reminded me of this. Thought I would pass it on.

My love to all, Marilyn

Juicy Peach

Chester has been up and down since the middle of last night. During the night, it was an issue of increasing pain in his limbs and his increasing difficulty in urinating. It took a long time to get on top of the pain. He was really needy of touch and would awake as soon as I removed my hand from his body to try to get some rest myself. Spasms and pain on his left side were scary and frustrating for him. He asked why, why and I answered that it was probably a result of tumor growth. That actually calmed him. He went into a meditative pose, going through mudras with his left hand.

Although much calmer, he was still in pain and he even requested a double dose of pain meds. Working with the hospice nurse, I was able to get his prescription changed to a long acting morphine to help him stay on top of the pain. That, along with a internal catheter, has really helped his pain.

He continues to go up and down, wanting to lay down and then sit on the side of his bed. When he wants to sit up, he wants someone to sit next to him and hold him. If he is lying down, he wants his hand held, his head rubbed or right now I am able to type this because I have my legs propped up on his bed along side of his body. It doesn't appear to be out of fear. I have this image of Chester eating a succulent, juicy, ripe peach and wanting to suck on the peach pit to extract every last bit of juicy flavor before he is ready to let go of that pit and allow it to be a seed for more juicy sweet peaches. It seems more like he just wants to make sure he doesn't miss a minute or a drop of the juicy life that he has led. He wants touch and he wants laugher and sleep just seems to get in the way! We are setting up an air mattress on the floor next to his bed tonight and hoping that will be close enough to allow both of us to get a bit of sleep.

He is definitely seeing things that the rest of us do not. It could be a side effect of the drugs, but I have noticed him looking like he was seeing things that I could not before we upped his meds. Tonight, it really seems that as the veil between life and death has started to part for Chester that he is seeing things that others of us can not. He overheard me tell Nancy that I thought he was having visions but he seemed pretty happy about them. His eyes popped open, he smiled and said peaceful. He has also repeated the word light many times today, which is not a word that he has used since I have been here.

Priceless!

What is priceless? Priceless was Chester's new and perfectly articulated word in proper and hysterical context. Priceless was Chester's expression 20 minutes ago. Chester laid low yesterday conserving his energy for a full family day today, visiting with his sister, father, step-mother and mother all at once. That in itself was a momentous occasion, everyone together in one room, laughing and loving him at once. Soaking it all in, he has stayed in his chair most of the day: enjoying good food, a manicure, another puzzle etc. Since the middle of the night, it has been important for him to be in constant contact with one of us.

Giggling together at the table, Teri, his step mother reached under the table to check to make sure he was dry. Chester sat up with a jerk and a look of total surprise on his face. I told him that Teri was copping a feel and he burst into laughter. He laughed and laughed and laughed. We even got Chester Michael Mainard to blush! After the laugher started to fade away, he looked at us, shook his head and said "priceless". It took us twenty minutes to stop laughing long enough to start this blog.

While I was at the dining room typing this, he started to repeat the word "home". I got up around the table and laid my heart against his back, his sister took one hand and his step mother the other. He settled against us and repeated home. We called over his mom and his step sister for a picture of his harem scarem. He wanted his friends to see his women. We hope you enjoy it.

Slowing down and speeding up

Chester is sleeping now, as he has most of the day. His pain in his right arm has increased and now he has some pain in his left thigh, so he has increased his pain medications. His speech, movement and body functions have slowed way down. He did get up briefly to enjoy some french toast, honeydew melon and pickled okra. Truly a breakfast that few other than Chester wouold imagine much less enjoy, but enjoy it he did. While we helped him transfer to his bed from the wheel chair, he had another seizure. It was brief and his breathing was OK but the seizure was differnt from his others in that this time he went completely rigid without any noticeable spasms. He has not wanted to leave his bed since the seizure. He naps or lies quietly contemplating.
Today, he has been much more patient, gentle and peaceful with himself. He hasn't had any outbursts of frustration. Yesterday, he really struggled with urinary retention, in a large part due to his embarassment and frustration in trying to use an urinal. I have been generously and frequently "sprinkled". Since last night, he has only been able to urinate when he is asleep. Although changing him wears him out, he is much more accepting of using the depends than he was of fumbling with the urinal. He seems to be trying to conserve his energy for family time and letting go many of the things he used to hold on to so tightly to maintain his sense of independence and control.
He has fought using a hospital bed, catheter, stool softeners, etc. Now, things have sped up on one end as we scurry about to put things into place to keep him comfortable, clean and dry, and most importantly allow him to conserve his energy for gentle conservation, hand holding and of course, laughter with his family.

Okra, dolmas and blueberry pancakes!

Although his appetite waxes and wanes, Chester's unbridled enthusiasm for flavor holds true. He has been delighting in the good food that his brother has been cooking for him. He was having a rough, sleepy morning until he heard that his step mom was going to make him blueberry pancakes. The promise of blueberry pancakes woke him right up. Well OK maybe my icy cold hands helping him use the urinal might have had something to do with his instant awakening, but it was the blueberry pancakes that put a smile on his face.

Several of you have called and asked me about sending some type of food to Chester. He can no longer eat sushi. When I asked him what he might like, he immediately piped up okra. He has a large jar of pickled okra that he likes to snack on and he made it clear that a little more of that would be a good thing. He also misses some of the foods that are harder to acquire out here.He was practically orgasmic over some dolmas that I brought with me from Seattle. He also has adored some treats that I brought from Trader Joes.


The house has been busy with family, friends and hospice. Yesterday a highschool, friend fixed him lunch and he was able to visit with her inbetween hospice assessments. The hospice nurse visited this morning and she and I did his physical assesssment together so I could help translate for her and Chester could hear from the both of us about trying to stay on top of pain instead of chasing it. He is having some pain on his paralyzed right side that increases when he moves around. He wants to get up in his wheelchair to join visitors at the dining room table, so we are working out a balance for his comfort and social needs. Right now, his dad and step mother is helping him with a leopard puzzle. It only has 100 pieces and the large size of the puzzle pieces are easier for him to grasp. With his vision changes, he needs considerable assistance but he is doing something with people that he loves and feels a deep satisfaction when he can fit a piece in.

Physically, things are slowing way down but good food, lots of love and simple joys help keep his spirits up.

Twenty Questions

Well roadside adventures, tornadoes and blizzards kept me away longer than I liked, but I finally arrived in Missouri last night to lend a helping hand. Chester was delighted to see me and was able to crack a joke basically about me being scary but he could handle me. He also was able to verbalize about the possibility of last sunsets. Unfortunately, those two times have been the only times when he could string words into short intelligible sentences since I have been here. His increasing frustration with his inability to form the words he wants and our instability to decipher his stock words and phrases like "all the way back", "all the way home" and "oh god" exhaust him and all that try to assist him. He continues to confuse yes and no, "acceptable" is a more accurate barometer of when we get something right for him. We finally hit on playing "Twenty Questions" as a more effective way for him to express his needs. His understanding is keen and he can nod or say acceptable if I ask him simple yes or no questions like "do you need me to get you something?", "do you need me to do something?" Once I get an affirmation on get or do, I can ask a series of simple yes or no questions until we ascertain what he wants. Asking him a lot of questions may seem like a lot of work, but he is actually really relieved not to stuck saying words that no one understands. I have framed it as going with his strengths right now which is his understanding and not forcing a weakness which is his speech. The look of relief on his face with figuring out a systemic way to communicate, because you know with Chester there is a PROPER way of doing things, has really made my day. You know how his whole face just lights up when something works?

With some headway on communication, my next focus is keeping him clean, dry and comfortable. He hasn't wanted to get into his chair today and last night he went to bed right after dinner. He is so tired that he not only needs help getting his legs into the bed, he also needs help moving his hips to get him aligned in bed. Right now, I am hopping over him and using the pads to get him aligned in bed. Tonight, we will rearrange his room a bit so I can get to both sides of the bed to position him. The family really wants to keep him at home until he passes, I am committed to staying here for the duration to make that possible. We will have to make a few adjustments to make it doable. For example, I can roll him by myself to change the pads but not enough to change his bed until we move it out from the wall. He opted to just have me change soiled pads instead of him getting into his wheelchair so I could change the whole bed. A small rail would help him be able to sit up at the side of the bed, this morning I have had to pull him up into a sitting position to use the urinal.

Hospice was initiated last week as his doctors have told him there is nothing left that they can do and there is no reason for him to return back to them. Several hospice personnel will come by later today to check in on him. I will be talking with them about the little things that will help us take care of him here and protecting our own bodies. Because you just know what Chester would say to us if we hurt ourselves from improper body alignment and support!

They tell me his computer has been acting up and I know his network is down. Later on today, I will take a look at it and read him his emails tonight or tomorrow. Even if he is no longer really able to communicate you in writing or verbally, he does cherish and take comfort in your thoughts. Nancy has asked me to keep you all updated and I will post on the blog. Feel free to call me or email me if you have any questions. The house phone does wake him up, but he seems to sleep through the ringer on my phone (206) 321-4414.
Bean