Blood Pressure Down, Bladder Pressure Up!

Yesterday we had an appointment with Chester's general practicioner to check in on his blood pressure medications. He had been taking Lotrel at two different doses for the past month or so, and has experienced a lot of dizziness and fatigue. His blood pressure readings didn't go down very much either. So we went in for a change of medications, hoping another class or combination of hypertension drugs would work better. Fitzer gave him a higher dose of the ACE inhibitor medication and eliminated the calcium channel drug. He also gave Chester a diuretic to help flush out the excess fluid that is causing the swelling in Chester's leg and hand.

Today, Chester started both new drugs and so far, so good. He was only a little bit dizzy this morning, such a relief after being consistently dizzy for over a month. His blood pressure readings were good- we got several low readings, even after doing a half hour walk. And without the dizziness, we were able to do several periods of walking and hand stretching, in addition to a Home Depot excursion with Jaime. And as his blood pressure dropped, his bladder pressure was elevated, the "piss pill" doing its job.

So a day of relief. It was great to feel that the new medications were working without any huge side effects. We'll see over the next few days how they work over time.

As June approaches, Chester and I are doing the work together of phasing me out of full time companion care. Mostly, we are just having long conversations about the nature of companion work, what kind of help he needs, what he can do on his own, the role of support from family and friends. We will be articulating and asking for more specific kinds of assistance in the coming weeks- so stay tuned for ways that you can help out. His Mom will be in town for 10 days starting next week, and then his sister will be coming to stay with him for the first stretch of the summer. If you would like to do primary companion care for Chester this summer, be in touch so we can schedule your visit.

We are off to shower and get ready for bed. Take care, all.

Companionship

Chester spent a lovely and quiet day in the companionship of Gil, while I worked for a half day and then went househunting. Gil prepared a duck dinner which was reported to be excellent.

I am still looking for someone to stay with Chester this weekend- Friday, Saturday and into Sunday. If you are available for ABBA mornings and sushi evenings this weekend, please let us know- email Chester directly at dragonfly@surfbest.net

Thanks folks,

Chrys

Tightrope Pt. 3; sensory integration

I have been hesitating to post this, as I fear it will be too long & too boring. I have rather a bee in my bonnet on the subject of sensory integration, since several members of my family have problems in the ADD/autistic spectrum, & sensory integration issues are a big part of that equation. Actually, folks on the ADD/autistic spectrum & others with various learning disabilities are often labeled with "Sensory Integration Dysfunction." (Doctors who work in this area are so judgmental about what is "normal" & what is not! Being different is not always a bad thing. Poor Superman -- did you hear? He can see through WALLS! Isn't it awful?)

Anyway, it was clear to me during my visit that Chester has experienced some significant changes in sensory processing, & I wanted to share with you a bit of what I have learned about sensory processing over the years. (It really is germaine, if you can stand it.)

First of all, most of us are blissfully unaware of our own sensory processing. It is handled unconsciously much of the time. This is both the good news & the bad news -- because when you start to have problems with it, or experience changes in it, it is hard to figure out what the hell is going on.

We all have at least 5 senses (I won't argue about any others that may or may not exist), which are bombarding us CONSTANTLY with data about everything around us & inside us. Every single hair on your body is connected to a nerve that can register a touch or a tickle -- every bit of your skin is monitored by sensory nerves -- internal organs like the bowels & bladder are keeping you updated on their function. Your ears are constantly bombarded with noises, near & far, soft & loud, important & unimportant. Within your field of vision are more objects than you can really deal with at any given time. Everything around you is exhuding an odor, whether you are conscious of it or not. Everything you put in your mouth tickles a variety of taste-buds. We even have a nifty little ability called proprioception, which is our ability to monitor our body's position in space using feedback from the muscles, tendons, etc. (You can close your eyes, & still have a pretty good idea what your hands are doing -- because the nerves in the hands are constantly reporting to your brain. And when you tiptoe through your darkened bedroom -- proprioception is busy guiding you.)

There is so much sensory data coming in that we would totally lose our minds if our brains did not have a way to filter & prioritize it all. And indeed, many behavioral problems have their roots in a person's inability to filter sensory data appropriately. (See -- even I can get judgmental about it. But darn it, being different CAN be a problem in some situations!)

One of the thing that makes this filtering so difficult is that it must be flexible, to adapt to changing situations. If you are hiking through the jungle, & an ant starts crawling up your leg, it is a good thing to know about. (Some of those jungle ants can be quite nasty!) So your brain would appropriately register that tickle as something to check out.

However, if a tiger suddenly appears out of the bushes, that is no time to be worrying about the ant! Your life depends on focussing on the tiger. (And indeed, if you stop to brush the ant away, that movement will only attract the tiger! People with severe sensory processing issues cannot ignore the ant to deal with the tiger -- not good, no matter how non-judgmental you are trying to be!)

One of the things the brain does to help us filter the incoming sensory data is to set parameters for "safety" or "comfort." It ignores stimuli that fall within those safe/comfortable parameters when they are not of primary concern, & blares an alarm -- triggering the famous fight or flight response of song & story -- if the parameters are exceeded.

Say you are eating a nice, juicy hamburger. You may be enjoying the burger, but you are also attending to your spouse & instructing your children on proper restaurant behavior, perhaps, or admiring a nearby sex object, or thinking about a problem at work. Suddenly you bite down on a piece of bone. Suddenly, when your teeth connect with that bit of bone, the hamburger gets your undivided attention. Your brain instantly informs you that there is something very wrong with your hamburger. Perhaps you spit out the mouthful of food immediately, reflexively (impolitely, but hey, we are talking survival here!) This is a variation on the "flight" response -- getting away from the stimulus that falls outside your parameters for safety. Or perhaps you go to the cash register to raise hell -- a form of "fight" response. Perhaps you attempt to unobtrosively remove the bit of bone, verify that it is nothing more alarming, & stoicly continue to eat. (Our conscious mind & social conditioning inform our responses to sensory information.) But one way or another, your sensory apparatus trips an alarm, & you respond to it.

The brain has an AMAZING capacity to adapt. Back in the Dark Ages, when I was in college, Psychology classes used to study experiments in which subjects were fitted with glasses that inverted everything in the visual field. At first, the students were disoriented & could hardly function. But at some point, the brain figured out that it could flip the imates upright. After having the students go around like this for some time, the nasty researchers then took away the glasses -- & the students got disoriented all over again, & had to wait for their brain to flip the images back to normal. (And, in fact, this is part of the flexibility I was talking about. When conditions change, the brain adapts as a matter of survival. The brain determinedly struggles to wrestle meaning from the constant, overwhelming flow of data. And fortunately for us, the brain is pretty darned good at doing that.)

Now, Chester's brain has been through rather a lot in the past year or so. First the tumor came along & started disrupting the normal neurological patterns in his brain. And then the surgeon came along & caused even more changes. (While I don't know a lot about such things, it is quite possible that the scar tissue caused yet more changes, & I don't even want to speculate on what the chemo & radiation might have done. That is WAY too far outside my experience.) This has all, quite understandably, produced changes in the way he processes sensory information.

For example, he was going through a box of things from his previous apartment, & discovered that he can no longer tolerate the shampoo that he used to use. Its scent bothers him. He says that his sense of smell has become doglike in its intensity. For the most part, he seems to be comfortable with natural odors like sweat, although he has trouble with garbage smells, & asks his companion to take the trash out every night. He is having more trouble with chemical odors (so Dawn rewashed her clothes when she arrived, to remove the smell of the soap or fabric softener that was bothering him.) If you are going to visit him & are thinking about spritzing on a little something to improve your smell, he might prefer to smell your sweat. (His reactions to some odors may border on a mild allergic reaction. Allergies & sensory processing issues tend to run in the same families, & are related in some strange way I haven't figured out. When my son had a course of neurodevelopmental movement therapy to address his sensory processing issues, his food allergies/sensitivities also disappeared -- which his therapist claims is not uncommon... Nearly every book I read on ADD/autism made reference to allergies, & a naturopath I consulted described autism & allergy as different kinds of inflammation in the body... There is a relationship, even though I cannot yet adequately explain it.)

His tastes in food have changed. There is no way to sort out which sorts of cravings are responses to deficiencies in the body, & which are driven by changes in sensory processing, but sensory processing is certainly part of the equation.

His tolerance for hot & cold foods is reduced -- he often microwaves cold drinks for a few seconds to make them less cold, or lets hot food cool a bit before he eats it. (This is a change in his parameters for what is comfortable.)

Things like finding your balance to stand upright are also affected by your sensory system. Chester has complained of odd sensations in the right side of his body -- his right arm & leg are still sending him sensory information, but it is much changed from what it used to be. His balance is impaired by the physical inability of the right side of his body to adjust his posture, but also by the disruption of his previous sense of proprioception -- his sense of where his body is in space has been disrupted. (He occasionally loses track of his right hand.)

All of this means that life in general is harder work for him than it used to be. He may get tired more easily than he used to -- especially in highly stimulating situations where there are a lot of people, a lot of noises, etc. He has to work harder to filter out the unimportant stimuli. This work is invisible to other people present -- he is not always conscious of it himself.

It also means that he has to bring more of his sensory processing to consciousness, instead of letting it be handled unconsciously. An odor, for example, may bother him until he tracks it down, verifies what it is, & assures his brain that it is "not a problem." (Smells, after all, can be an important indicator of whether the meat is safe to eat, or whether the house is on fire, among other things. Any odor outside the brain's comfort zone could be an important warning. If you are conscious of more odors, you have to check for more potential dangers.)

Many of his perceptions are now more sensitive than they used to be -- which means that his internal alarms are being tripped more often -- which means that he is in a state of arousal more often, poised unconsciously for fight or flight. I wouldn't be surprised if this were related to his blood pressure issues, & I am strongly convinced that this has something to do with the "labile" state attributed to brain surgery patients. Naturally you are going to be more "labile" if your brain is sending you constant little alarms about sensory input that is outside your new comfort zone. (The good news is that this is likely to moderate in time, as his brain adapts to the changes -- especially since he is dealing with it consciously.)

A young man of my acquaintance had what seemed to be a filthy temper. He seriously "over-reacted" to simple problems. However, it was determined that he had serious visual processing problems. After a course of vision therapy, he suddenly became a very mellow person. His "over-reaction" was to a problem that no observer could see. He was constantly tripping over things -- because they weren't exactly where he thought they were. He was constantly spilling things -- because the glass was not quite where he thought it was. Every moment of every day, simple things were going awry on him, for no reason he could understand. The constant frustration was responsible for his "filthy temper." People who thought he was "over-reacting" had no idea what he was reacting TO, & therefore, had no idea that his reaction was more appropriate than they realized. (From his point of view, inanimate objects were leaping into his path to trip him -- constantly. Nobody would like that. It would make anybody grumpy!)

I do not raise these issues to make you worry about your behavior. Most of the time, Chester has to sort this out in his own brain. I raise these issues because our being more conscious can occasionally be helpful to him. And in order to be more conscious, you have to understand what is going on, & ponder it a bit.

I have talked to parents of kids with ADHD -- many of whom are totally unaware of the sensory processing issues associated with ADHD. They will put the kid's t-shirt on in the morning, & he will complain about the scratchy label at the back of the neck. They will tell him not to be a sissy. He will complain that he doesn't want to wear THOSE shoes, & the parent will feel around inside & determine that nothing is out of the ordinary -- & put the shoes on him anyway. They send him to a classroom where his hyper-alert nose is assaulted by chemical cleaners, & his hyper-alert ears are bombarded by the noises of lots of people -- while his shoes irritate his feet & the label in the back of his t-shirt chews away at the back of his neck. And then they wonder why he is not paying attention when the teacher is talking about math. Well, he is already paying attention to too many other things -- things for which his brain is DEMANDING attention. He can't help it. (So I spend some time trying to convince parents that they should help as much as they can. A hard sell, when you can't see the problem. Would it kill you to cut the damned label out of the back of his t-shirt?)

Chester's sensory processing has been disrupted in a different way, & we have no way of knowing what he is perceiving. It is not really our job to figure it out, & he wouldn't expect or want us to. (He especially wouldn't want us all worrying about it all the time! There is no way you can be responsible for what he is sensing, & if HE is having trouble figuring it out, there is no way that you can! So don't obsess about it.) However, our consciousness might enable us to help him from time to time.

For example, I would never thrust a bottle of perfume under his nose, & ask him what he thinks of it; his olfactory sense is VERY sensitive these days. He doesn't need a strong whiff of anything. (He can probably smell it if you stand outside the door of his apartment!)

The women in my family have an annoying tendency to shove food at people, & expect them to eat it piping hot & in inappropriate quantities. My mother would flip out & get absurdly over-emotional if Chester sat around waiting for her meal to cool -- as though he were personally rejecting her. It is really easy to make unconscious value judgments about people who are experiencing a different sensory reality than you. (I have seen parents describe children as "too picky" as being "difficult" as being "a sissy." People can get way too emotionally involved in projecting meaning onto a situation.) If you cook Chester a hot meal & he doesn't eat it right away, he is just waiting for it to cool down into his comfort zone. It is not a big deal. Relax. Don't fuss & fret over it & try to figure out what it means -- don't leap up & offer to cook him a different meal. He is not dissing you or the food. (He will probably tell you this, but if he doesn't think of it, I am hoping that my saying it will help you to be more comfortable with it.)

If you take Chester somewhere where there are a lot of people, colors, noises, odors -- he is going to tire more quickly than he used to. And he may want some quiet time afterwards to calm his nervous system. I imagine this is one of the functions of the naps he takes -- quiet time in a familiar & comfortable space helps an overworked nervous system to calm down. In general, he can't filter out as much stimulus as he used to, & probably not as much as you can. Again, it is not a huge big deal -- I am not advocating that you get all freaked out about it & hover over him trying to fix it. (Hovering over him just becomes more stimulus to filter out!) But if he tells you he is tired, or that he needs a bit of quiet, I thought it might help to know what that is about. It doesn't mean that he is mad at somebody or not enjoying himself or any of those things that people worry about. It just means that he needs to reduce the incoming stimuli.

Fortunately, he is uncommonly self-aware, & he will most likely figure out what he needs on his own, & tell you about it. But your awareness can simplify that for him, in a few situations. I can't stress enough that I am not suggesting that you hover over him, asking if things are bothering him. Having somebody hover over you in a state of hyper-alertness could easily become another stressor. (If they rush you to the front of the line in the emergency room, that means that you are in deep doo-doo! Hyper-alertness in people around you is another thing that can trigger the state of arousal, since it is another danger signal.) I am advocating a state of relaxed awareness -- & not just for Chester. (I really do have a bee in my bonnet about this!)

We tend to interpret the behaviors of others through a filter of our own perceptions. (What other way do we have to do it?) It can help us in a lot of areas of life, if we can be aware that the other people are filtering their perceptions through radically different sensory apparatus.

This is one of the tight-ropes that Chester is now walking. His nervous system is trying to find a new equilibrium. The fundamental balance of his nervous system has been changed. It's not just about his sense of smell being more acute -- it is about a major reorganization in sensory processing...

The Latest Info

Chester and I just returned from a big errand excursion, which included picking up the report from his latest MRI. From my (non-MD) reading, the results are very good news. The overall tumor site has shrunk in size from six weeks ago, no new abnormalities are found, and the results indicate that the edema and scar tissue are due to treatment and surgery, not new tumor growth. We will be getting more medical-professional readings of the report in the coming weeks, and will let you know if we hear anything more. Below is a copy of the report for anyone who wants to sift through the medical technical language.

We've had a very lovely offer from Chester's good friend who is a school teacher and is able to be a primary companion this summer. I am sure she would welcome help from others, so if you are able to spend stretches of time with Chester this summer, please be in touch.

I am also looking for an overnight companion for the following dates: this weekend, 4/21-4/23, and the first weekend in May, 5/5-5/8. In addition, I am in the process of moving to the east bay so will need time to pack. (now that we have Chester's move almost done, I get to start moving myself!). So companions, companions, companions- step up and pick a date! Chester's health is pretty stable right now, spirits are high, and there is much fun to be had around these parts. Come join in on the fun.

After I read Chester the MRI results, we talked about what it means to be a long-term survivor of this brain cancer. One of the core pieces of this reality is that he needs our help on many levels- the practical help of having a companion here with him, the financial help of surviving in the Bay Area unemployed (and with a ferocious appetite for sushi), and the spiritual and psychic support of knowing that he is held in community. I encourage each of you, dear friends, to consider in what ways you may be able to help Chester in the coming months (and years? ? ? ), supporting him as he beats the odds and keeps on living. I said back in August, when I heard the prognosis, that I was prepared for miracles. I would support him in dying if that is what happened, or I would be ready to be amazed and shocked at his survival. Well, the latter has turned out to be the case, and we are now officially on the miracle team. I am now ready to sit in awe as he continues to beat the odds and keep on gracing the world with his presence. How can we all, as a community, contribute to this miracle of living?

Happy Easter!

Spirits were high this Easter around here. . .



. . . until Chester realized that the Easter Bunny didn't leave him any sushi in his basket!

One Year

Today marks one full year since the first outward expression of Chester's brain tumor. On tax day last year, he had what he later learned to be his first seizure- a series of tics in his face. The facial tics persisted, and then his hand started going numb, and over the next three months it all spiraled away. By August, his right arm was almost totally paralyzed, his leg was starting to go with it, his speech was severely compromised, and he was having trouble breathing. This blog chronicles the story from then on.

One Year is a major victory for someone with Glioblastoma Multiforme. Without treatment, folks pass within months. Chester was dangerously close to this point when he underwent the massive resection last August. With treatment, the median survival is 3-12 months. So Chester is already in the miracle zone, and has been for quite some time. And not only is he living, he is ALIVE! He is able to walk and move with grace, is independent in most of his daily living, and is able to communicate to others. This past year, and especially the past eight months, have all been an amazing testament to his life-affirming, embodied spirit. He has chosen to live, and to live consciously. I am very grateful for all of the effort and commitment he has invested in surviving.

Wherever this next year takes him, he will be considered a long term survivor. He will have not only survived, but thrived. He has continued to teach, to stay connected to his dear friends, to stay in close contact with his family, and to live joyfully. May we all survive and thrive, allowing our bodies to guide us with wisdom and humor, allowing ourselves to be loved and supported by all of our intersecting communities.

Beautiful Beast

More busy days here in Chesterville. Yesterday he got an MRI, and then we feasted on buffalo with friends. Our freezer is full of beautiful meats that Chester's brother Dan brought with him (he carried a big insulated bag full of frozen meat on the airplane from Missouri- venison, elk, buffalo, fish, and other delicious meats that he had hunted and processed himself- what a gift!)

Today Chester and I did his taxes, which was quite a shot in the dark. We had to wing it, and send them in with a nice note to the lovely people at the IRS saying, essentially, "i've got brain cancer, audit me if you dare!" But improvised or not, it was nice to have that done and not have to worry about it anymore.

We then spent the afternoon playing with plumbing, sorting through boxes, and visiting with a friend. A busy but relatively uneventful day- not too much to report.

As we were sorting through boxes, Chester found his "devil horn tiara", which he had put together from two pieces of 1930's rhinestone jewelry. When he put it on, I knew I had to capture the beauty for you all. And the photo also shows off all of Chester's hair, which is growing at an alarming rate. He is a furry beast, for sure. Just after this photo was taken, his visitor arrived, and Chester forgot he had the tiara on. He ended up spending the whole visiting, in deep and serious conversation, wearing the sparkly jewels on his crown.

Pain in the Ass

Another rainy day with Chester. For those of you not in the Bay area, we've had a historic amount of rain over the past six weeks. As in, it has rained nearly every day for six weeks. The earth is saturated, the gutters are working overtime, mud slides and floods are afflicting the area, and spirits seem to be soggy around here. Rain doesn't usually bother me- in fact today Chester and I were talking about our mutual fondness of parading naked in the rain- but we are all a little tired of the incessant downpour.

Yesterday we braved the rain to make it to an appointment with Chester's general practicioner. We arrived at the office soaked and shivering, and left with a handful of prescriptions. Mostly refills of the drugs Chester is already taking, with the addition of a mouth wash for thrush and a hydrocortisone cream for Chester's sore butt. Chester has developed a very sore hemorrhoid, and it is even more sore because he has to sit on it so much in the wheelchair. We are taking care of it, but it is certainly a royal pain in the ass for the fussy old queen.

Today we also started the process of unpacking- now that all of Chester's belongings are down here, we get to start filling the shelves and making sense of all of it. Our first task is orienting all of the shelves, deciding where the crystals want to live and where the everyday items need to be to make Chester's day easy and efficient. Today's task was rebuilding a tall shelf, rearranging the shelves so that they would fit on the wall where we wanted it without bumping into the fuse box and other clunky things sticking out of the wall. The apartment feels more and more like home as we unpack and the dust settles.

I just got Chester settled on his third sitz bath of the night. He is really craving a nice warm bathtub immersion, but we haven't yet figured out a way to get him safely in and out of the tub. So at least his butt gets a warm soak in the basin that fits in the toilet. It seems to be quite a relief for him so far, and hopefully the hemorrhoid will relax very soon.

Tomorrow Chester gets another MRI. This is about six weeks since his last MRI that showed the half-centimeter growth of the primary tumor location. The information we get from the MRI tomorrow (results not till Monday) will help him make more decisions about further medical intervention or not. Meanwhile, his head wound has never looked so good- the wound site has sealed up completely, it hasn't been weeping at all for two weeks, and there is no redness or itching. All good signs- it is my hope that the respite from chemotherapy and the additional antibiotic may have helped any possible infection clear up and Chester can keep his head together. Still, there is the possibility of the bone flap removal, and we will keep you posted.

Important information and requests about companion care for Chester: First, I want to extend deep thanks to all those kind souls who have spent time with Chester as his primary companion. Those nights, weekends, and weeks of companionship have been most appreciated, and I trust that you all enjoyed your intimate time with Cheeky. On my part, I am committed to continue my time here with Chester until June 1. That will be nine months of being with Chester (with the breaks provided by all the other lovely folks who came and spent time!). I don't _want_ to withdrawal my full-time commitment, but I need to. I am needed to co-facilitate this summer's Sexological Bodywork training with Joseph Kramer, an eight week course beginning mid-June (the same class we were teaching with Chester last summer during his diagnosis). I need to have at least a week before class begins to come back into my own body and refocus my attention. So this means Chester is looking for summer companions- ideally, one or two very dedicated individuals who can take on my roles. He needs someone to live with him, assist him in keeping track of his schedule and medications, help him with daily tasks, and provide care and company. This is a major commitment, and I encourage those of you who are able to consider stepping up for this task. Who amongst this dear community can dedicate their summer to Chester's care? Who will set aside other commitments to focus their time and energy on being with our beloved friend? If anyone reading this gets inspired to be one of Chester's angels and spend their summer with him, please be in touch so we can begin communicating about it. I'll be posting again and again about this need until it is filled- so please, take some time to consider the possibility and see what emerges. It is a very vulnerable place for Chester- to need full time care, to rely on the generosity of friends to sustain him, to depend so much on the goodwill and dedication of his community. So far he has been graced with so much support and love, and I trust it will continue to flow. And, I assure you- while this role is huge and sometimes exhausting, it is by far the most rewarding and profound relationship I have ever invested myself in. To be with Chester as an ally and friend and assist him in daily survival is a very blessed opportunity, and I encourage you all to consider the joy and connection of the role in addition to the work and sacrifice it requires.

Chester just rolled out of the bathroom and we'll now begin the process of getting ready for bed. Till Soon, Dear Friends.

Tightrope, Part 2

It is 3:15 a.m. I have had less than half a night's sleep, but if I am to have any hope of getting another quarter, I need to continue my interrupted blog entry. I will be up whenever Chester is up, ready or not, so while he is still snoring, I need to get back to sleep. (This is my official excuse for any typos that may follow. I am writing by the light of my laptop screen, & only half awake.)

I titled the first entry as I did, because Chester & I had been having some conversations about how he feels like he is walking a tightrope -- living in fear of falling off, or of falling astride the wire. (OUCH!)

One area where this is most clear is in regard to his medications & other medical treatments. The steroids he is taking have given him the "pie face" & Buddha belly that he is less than happy with, & contributed to the blood clots he had in his arm, & the slow healing of his wound. Every time they have tried to wean him off the steroids, he has suffered serious symptoms -- but staying on them has forced him to go on blood thinners, & may force him to have more surgery... He finds himself constantly weighing these sorts of trade-offs.

Another area where this arises in his relationship with the many people who help him. He is very appreciative of all the care that is being lavished on him by so many people. He has been told that many people in his condition wind up on the street, totally vulnerable -- a thought that brings tears to his eyes. He thanks people graciously for the smallest service (& frets if he forgets to.)

At the same time, he is struggling to maintain a sense of his own autonomy. A few days ago, he was loading the dish washer, & I asked if I could help him. He replied that he really enjoyed loading the dish washer, because it was something he could do to feel useful. I realized that I was struggling with my own need to feel useful as I watched him. Each of us felt the need to load the dishwasher, in order to feel good about himself. For the record, I eventually sought a different chore to help me feel good about myself. When does generosity become selfishness?

As I pondered this a bit, I related it to my own experience of parenting. On the one hand, the job of a parent is to protect the child, but on the other hand, the job also entails encouraging the child to stand on his own & move away from the parent. It's a variation of the old roots & wings idea. Parents who only "protect" their children rob them of independence/wings. People who push their children to take responsibility for themselves too soon, rob them of their security/roots.

Walking is difficult for Chester, so at times one is helping him by saving him steps. But walking also is very important to his body as it struggles to achieve a greater state of health. Walking is good for his circulation, for helping to reestablish neurological pathways, for helping to restore his literal balance.

It is not as though there is a single right way to achieve balance, once & for all. The balance changes from moment to moment. The tightrope walker carries that pole so that he can make constant adjustments. The steroids are necessary until someday, hopefully, they are not. Accepting help is necessary in this case -- moreso when he is getting tired, & less so when he feels stronger & more energetic. My few days of walking the wire with him have been a real eye-opener!

I will be flying home in the afternoon. My husband tells me that he has been wandering the bed in his sleep, trying to find me. (For those of you not lucky enough to have a menopausal woman of your very own, we are cozier than electric blankets, though occasionally a good deal soggier, too.) I think I will be posting here a few more times. But hopefully I can get back to sleep now!

The Tightrope Walker

My name is Anne Seals, & I am a high school friend of Chester's, down from Seattle to spend a few days as the in-house companion. I was sure that I would post to the blog every day while I was here. Like lots of the other things I was sure of, my certainty did not match up to reality...
I have missed hearing from Chester on a regular basis -- even got my feelings hurt over it a bit -- but now that I am on the ground, I am gaining a better perspective on that.
Everything takes so damned long in Hemiplegiaville!
I arrived Thursday, & quickly learned how many little time-consuming things there are to do just in terms of basic maintenance. The right hand has to be stretched in a device of torture for part of the day to flatten out the fingers (which want to curl up.) Then it has to be squeezed into another for another part of the day, soaked in ice water when the edema gets bad, lifted & positioned with his left hand for various things... And that is just the one hand!
He wears special pressure stockings ($120/pair!) that have to be coaxed & bullied into position -- I can't even think what to liken it to. Sucking a watermelon up through a straw maybe? In Noplegiaville, putting on your socks takes a few seconds. In Hemaplegiaville, when you are in the hands of a fumbling companion -- well, I would be too embarrassed to post here how long it took this morning! Suffice it to say that it was one helluva lot of seconds!
We have spent a lot of companionable time cursing the foot rest on the wheelchair, which we agree is of piss-poor design. When not needed, it industriously hangs itself up on curbs, scrapes walls, blocks the brake on the right wheel, falls off on the big feet of retarded companions who forget to remove it before trying to stuff the chair in the trunk, & just generally makes itself annoying. (This morning I was dragging the chair behind me on the morning walk, & one of his neighbors had parked a HUGE flower pot on the sidewalk. I veered around the pot successfully, only to have the footrest hang up on a curb on the other side. And meanwhile, Chester was taking off without me -- which I am not supposed to let him do!)
Yesterday, Himself indicated to me that this is the first slow time he has had in a while -- the move from the other appartment is over, & he is not currently having therapy, & there are no medical appointments...
If this is a slow time, I would need to join a gym & get in shape before I could handle a busy time! (Chrys, I don't know how you do it all! Did you swipe Hermione's Time-Turner so that you could magically squeeze extra hours into every day?)
I had talked to Chester on the phone a few times, but was blissfully unaware that all the planets have to line up right for him to be comfortable talking on the phone (or to have the time!) I have studied & taught foreign language, & it is always harder to understand on the telephone when you are speaking a foreign language. When your own language has become foreign to you, the same thing applies. Without the visual cues, & with the slight interference that blurs sounds on the telephone line, conversation is significantly more difficult.
His articulation is subject to change without notice. (The other morning, he bragged to Dawn & me that his articulation was very good that morning -- & then the next sentence out of his mouth went totally astray. Dawn says it happens every time he brags.) He gets very frustrated when words fall apart in his mouth. (Interestingly, when all other words have shattered & fallen on the floor, "Oh, God dammit!" comes out as clear as a bell. Cursing, like singing, happens in a different part of the brain.) He is doing as well as we have been told, but it is an effort, & sometimes there are glitches.
He had told me some time ago in an email that he was getting a FrogPad, so that he could write emails again, rather than having to ask other people to do it for him. I looked up the FrogPad on-line, & was fascinated to learn that it is a tiny keyboard designed for use with one hand. I waited impatiently for the normal stream of emails to start coming, & couldn't figure out why I they weren't. Well, the first FrogPad he got was a Bluetooth device -- & the Bluetooth kept cutting out on him. Vastly frustrated, he returned the Blootooth version for a USB version. The USB version worked quickly & without the technical problems, but now he has the problem of learning to use the thing.
Unfortunately, the instructions are lousy beyond belief. The device is also terrifyingly complex. Every time he sat down to try to figure it out, he got frustrated. Yesterday, I sat down for 2 hours with him, & we puzzled over it together. The problem with the FrogPad is that each key has multiple functions, which have to be accessed by shift-type keys. I don't think there is a single damned key on the pad that has only one function. One key can produce 2 different letters or a number or a punctuation mark or a function or cursor key of some sort, if you first press the right key to access the correct function of the key. (I don't even have a vocabulary to adequately describe the process -- & neither, unfortunately, does the manufacturer!) If you press the number function key down once & release it, a light comes on on the number function key, & pressing the number 7 gives you one result. If you hold the number function key down while pressing the number 7, something entirely different happens. (And since some of the things do not include the creation of a symbol in a document, you can't always tell what the key is doing. On the teaching page, if you are hitting a key that would "page up" in a document, a funny little unexplained symbol appears on the training screen. Good luck finding any explanation of that frigging symbol on the instructions! You have to sit & figure out which of the 4 things assigned to that key is represented by the symbol -- if you can remember which key you gave an experimental tap in the first place!)
Off to the side of the FrogPad, there is a row of 4 little LED lights, each with a cryptic symbol by it. We have looked everywhere in the instructions, & took a quick tour through the web-site, & we still can't figure out what those damned lights are for!
Himself is just arising from his nap now, & we are about to take another run at the FrogPad shortly.
I will post again -- sooner or later... (If I don't strangle myself on the cord of the FrogPad in a moment of despair!)

Disability and Empty Rooms

Today started off on a good note. I was awakened by the phone ringing, flew out of bed (to find Chester awake and already sitting up) and was greeted by our lovely Social Security officer, letting us know that Chester has been approved for Social Security Disability income. He'll get his first check in June, and has been approved for the full payment amount ($850/month). We are going to meet with the folks at the Social Security office next week to see if we can get the Medi-Cal expedited, since he has been approved for SSD. Apparently, the disability payments are the hardest thing to get approved for, so once the Medi-Cal people are alerted to his approval, he should get Medi-Cal right away. Feels good knowing that the process is almost complete and that Chester will be having a bit of an income starting in June.

After breakfast (goat cheese and cilantro omelettes), Chester and I went on a walk. He has been a bit more shaky and dizzy recently, so yesterday's and today's walks were a good accomplishment. It isn't safe to push through the dizziness and walk when he is feeling off balance, but we also need to keep everything moving. So the solution is to just keep trying- if the dizziness doesn't pass, we allow for a rest period and then try again in awhile. Eventually, Chester is able to stand, feel balanced, and go for a walk. It always feels good once we are started.

The move from Forest Lane is finishing up. Today I finished clearing out the massage studio. After wrapping the rest of the crystals, pulling down the tube lights that lined the ceiling, wrapping up all the beautiful art and sacred objects, and loading the car with massage stools and mirrors, I said a closing prayer for the studio. I sat on the steps and thought about all the people that arrived to the studio for a session with Chester, of all the numbness and pain, tightness and soreness that was carried up those stairs. I thought of my own visits to Chester for sessions, of the breathy anticipation of entering the warm and vibrant studio and finding a cozy table waiting for me. And then I thought of all the pleasure and enjoyment, the relaxation and peacefulness that was generated in that studio, of all the magical massage that Chester offered to his clients. The radiant aliveness of the bodies leaving the studio and climbing back down the steps. I thought of all the transformation that happened in the unassuming little massage cottage. I considered all of the beauty that was generated from the simple gift of breath, touch and presence. Turning my attention to the expansive, hazy view of the Golden Gate Bridge, I then considered all of the people Chester has instructed in touch and breath, all those folks to whom Chester gave permission to do their own sacred work. Knowing that these hands are still working, all over the world, I reminded myself that Chester is still very much at work. His magic is at work whenever one of his students offers touch to a client, loved one, or stranger. Chester's commitment to the breath is deepened whenever one of us bring the breath into consciousness and changes the moment with a single anal breath. With this knowing, I closed the massage studio, now just an empty room with lots of spiders feasting in the corners. I carried the final load down to the car, cried until it was safe to drive, and then whisked the final load of his belongings to Chester's home here at the loft. Tomorrow we will bring the bookshelves down, the final task of Chester's move, and start unpacking the crystals, welcoming them back home.

Another Late Image

Here is a picture from Marilyn of Chester and Mama Mainard- another gorgeous family portrait of our favorite Missouri crew.