Today is 16 months since my surgery. Kimberly and I started the day with a trip to UWMC for a follow-up with Dr. Futran. I’d gone for a CT scan on Friday. That was not too bad – it only took one needle stick, though it seemed like the actual scanning took longer than other times.
A couple of weeks ago, the students in the memoir writing class that I just finished in the UW Extension Writers Program had a public reading at the UW Bookstore. For the reading, I reworked a piece that I wrote early in the year. Before taking this class, I had trouble writing multiple drafts. My teacher, Laura Kalpakian, and my classmates have, through their regular critiques of my work, helped me learn about that part of the writing process. Here’s the piece that I read:
When Paul and I married seven years ago, neither of us knew this sad truth: I can’t make a decent latte. Early in our marriage, Paul demonstrated, more than once, the process of transforming dark- roasted coffee beans and cold milk into a steaming, foamy, caffeinated treat. Standing by my side before the black and chrome contraption, he patiently guided me through the process of grinding, filling, tamping, steaming and pouring. The lessons did not take. Oh, I made a latte or two, but my lattes hissed and spit out of the espresso machine either too weak or too bitter. The barista who served me such a latte would not have been tipped.
One morning, when I requested Paul’s assistance with the espresso maker yet again, he exclaimed in frustration, “I don’t understand why you can’t do this. You’re good with machines… hell, you understand how most things work without reading the instructions. Do you have some sort of a brain injury?” This question, from the man whose pet name for me is Brains, struck me as absurdly funny. I burst out laughing, and Paul joined me. We stood in our kitchen, hugging each other, giggling.
My supposed ‘brain injury’ became a recurring joke. Paul would marvel that my injury had impaired only my ability to tamp grounds and steam milk. I would nod in agreement, and comment that the workings of the human brain are not fully understood by modern science.
Once my condition had been identified, Paul shouldered barista duty at our house. Each morning he would bring me a latte in bed. One of the small daily pleasures of my life was waking to the sound of my husband walking into our bedroom, singing this short verse:
Coffee drink delivery service
Coffee drink, if you are nervous
About how youÂre going to wake.
Have yourself a coffee break.
In January of 2004, Paul was diagnosed with an oral cancer at the base of his tongue. The surgery to remove the tumor would be long and dangerous, the lasting effects on his speech and swallowing uncertain. A few days before surgery, Paul expressed concern about my morning lattes. “You won’t have coffee drink delivery while I’m in the hospital. What will you do? How will you wake up?” While his tone was light, I heard the dark thoughts and real questions beneath the surface of his words: How are you holding up? I’m sorry I’m putting you through this. Are you going to be OK?
I could answer the surface question easily. Finding coffee in Seattle is simple. The espresso bar in the hospital lobby could meet my needs while Paul was hospitalized. We have five coffee shops within as many blocks of our house. I would not suffer from lack of coffee.
I had no answers, simple or otherwise, for the unspoken questions. Too many unknowns waited on the other side of Paul’s surgery. Would he survive the surgery, and the cancer, or would I lose him? What toll would his illness and treatment take on him, and on our relationship? I believed that I was coping well, but I knew that might change. I didn’t know whether I would be OK.
Several weeks after Paul’s surgery, I woke, feeling cold, in our still-dark bedroom. Pulling the down comforter up to my ears, I turned to snuggle up to Paul. The hand I extended landed not across his shoulder, but on soft, warm fur. In an instant, I went from half asleep to worried. Why was Paul up so early? He had been out of bed long enough that our cats had claimed the warm spot against his pillow. Was he feeling ill?
I was about to call out his name when I heard footsteps on the stairs, and caught a whiff of coffee. Relaxing under the comforter’s warmth, I waited. Paul’s singing wasn’t elegant that morning, but it brought tears to my eyes. The latte was the best I’ve ever tasted, the love with which it was made almost visible in its foamy top.
I’ve always been a sappy, idealistic kind of guy, the kind of guy who loves Frank Capra films because he wants to believe in goodness, and who wishes that the news from the Senate this week had been a bit more like Mr. Smith Goes to Washington. Luckily, Kimberly is pretty sappy in her own way, so neither of us has to be embarassed when we get misty-eyed about a TV show.
Since my lymphoma, I’ve developed an added dimension of this, which, for the lack of a better term, I’ll just call ‘the weepies.’ There are just some things that can instantly trigger tears streaming down my face before I know it. My near-death experiences have left me with a clear channel straight to my unfiltered emotional heart, and every so often, something can zip right down that channel and hit a switch, and out come the tears.
It’s not always tears of sadness, or pain. Often the opposite. In fact, to me the interesting thing about these tears is that they are often so many things at once, happy, sad, grateful, grieving. I wasn’t kidding about that clear channel; this is undistilled emotion, before it’s gotten fractionated into happy or sad. Depending on the trigger, it may have more a flavor of one or another identifiable feeling, but it’s never, ever simple.
Over the years I’ve developed a list of some triggers, things that have set me off more than once, and some that will do it every time. A beautiful dawn, or the right kind of sunny day will do it, and for those the predominant flavors are joy and gratitude.
Songs seem to be good as triggers, and there are some that will get me weeping immediately, no matter what mood I’m in. One of these is the Louis Armstrong version of ‘What a Wonderful World’, although just about any other version will do. After what I’ve been through, the awareness of what it means to simply be alive to experience the world is powerful. I always think it’s funny when that song comes on the radio, because there it is a happy, optimistic song, and there I am with tears running down my cheeks, barely able to speak, because it is such a happy song.
Other songs work for different reasons. Sometimes the lyric strikes me in just the right way, and sometimes it’s something that I heard at a particular time, now linked to a particular experience. Bob Dylan’s ‘Knockin’ on Heaven’s Door’ is one. You don’t have to be Freud to figure out that a song with the lyric
that long black cloud is coming down,
I feel like I’m knockin’ on Heaven’s door
might have some resonance for me. It probably helps that I heard it on the radio late one night, when I was alone in my hospital room, after the radiation treatments had failed, and the chemo hadn’t started working. I weighed less than 120 pounds, and was inexorably losing a pound a day.
So those tears are mixed with remembered fear and loss, as well as relief that, while I was knocking, no one answered. For a moment, that song connects me with the young man who was bawling that night at the hospital, and simultaneously with the awareness that I made it, when I really wasn’t sure I would, and me-then has a good cry with me-now, and then the song ends, I wipe off my face, and go on with whatever I was doing.
In the past week, I’ve discovered two new songs that set me off, after the fight with the Squamous Monster. One I’d never heard before, but it was just so pretty. It probably helps that the lyric and structure remind me of both the courage I needed, and the strong feeling of communal support that made it possible, but I was teary before the end of the first verse. Not my usual response to a new song on the radio.
The song is ‘One Voice’, by a Canadian trio called the Wailin’ Jennys. You can listen to it here, and read about these three young women at their website. Kimberly wrote a lovely description of hearing the song on Prarie Home Companion, which I’ll just steal outright. (It’s a community-property state. 😉 )
Then came a voice that demanded my attention, a woman’s clear, pure voice singing:
This is the sound of one voice
One spirit, one voice
The sound of one who makes a choice
This is the sound of one voice.
A second female voice joined in, her close harmony floating just below the melody:
This is the sound of voices two
The sound of me singing with you
Helping each other to make it through
This is the sound of voices two.
With the third verse came a third voice, weaving its way through the other two:
This is the sound of voices three
Singing together in harmony
Surrendering to the mystery
This is the sound of voices three
This is the sound of all of us
Singing with love and the will to trust
Leave the rest behind it will turn to dust
This is the sound of all of us
After an instrumental interlude, the three women’s voices returned. The first line of this verse mirrored the beginning of the song, but the meaning of ‘one voice’ was dramatically different:
This is the sound of one voice
One people, one voice
A song for every one of us
This is the sound of one voice
This is the sound of one voice
When the song ended, I was teary-eyed with joy, for both the beauty of the singing and the glorious hopefulness of the song.
(As I say, she’s sappy in her own wonderful way, which makes it easier on both of us.)
The other recent discovery came as a surprise, because it’s a song I’ve heard probably hundreds of times before, without waterworks. I think it’s now a trigger because the lyrics resonate with how I’m feeling these days, as I move on with my life after a very bad time. There I was, listening to the CD player in my car, to a disc I’ve played before, and suddenly I was bawling. Luckily, I was parked in the driveway, working on my car.
So far, I’ve only tried one version of this song, so I don’t know if others will work the same way. This one is by a singer named Alana Davis, and if you remember that 2003 Sony Super Bowl commercial ‘Trip‘, with the guy who spends his kids’ inheritance on a trip into orbit with the Russians, you’ve heard it. (There’s a zipped MP3 file of the first two verses in the Sounds section of her website.)
The song is the classic ‘Carry On’, by Stephen Stills, and the beginning has a whole new meaning to me after getting through this illness.
One morning I woke up and I knew
You were really gone
A new day, a new way, I knew
I should see it along
Go your way, I’ll go mine and
The sky is clearing and the night
Has gone out
The sun, he come, the world
is all full of light
Rejoice, rejoice, we have no choice but
To carry on
The fortunes of fables are able
To sing the song
Now witness the quickness with which
We get along
To sing the blues you’ve got to live the dues and
Love is coming
Love is coming to us all
…Paul and I married. One of the readings at our wedding was this excerpt from Anne Morrow Lindbergh’s A Gift from the Sea:
A good relationship has a pattern like a dance and is built on some of the same rules. The partners do not need to hold on tightly, because they move confidently in the same pattern, intricate but gay and swift and free, like a country dance of Mozart’s. To touch heavily would be to arrest the pattern and freeze the movement, to check the endlessly changing beauty of its unfolding. There is no place here for the possessive clutch, the clinging arm, the heavy hand; only the barest touch in passing. Now arm in arm, now face to face, now back to back – it does not matter which. Because they know they are partners moving to the same rhythm, creating a pattern together, and being invisibly nourished by it.
The joy of such a pattern is not only the joy of creation or the joy of participation, it is also the joy of living in the moment. Lightness of touch and living in the moment are intertwined. One cannot dance well unless one is completely in time with the music, not leaning back to the last step or pressing forward to the next one, but poised directly on the present step as it comes. Perfect poise on the beat is what gives good dancing its sense of ease, of timelessness, of the eternal.
My brain is full, and I’m tired in that odd way that only comes from doing almost no physical activity while staring into one or more computer screens for hours, navigating directories on remote hosts, installing software, and figuring out where you’ve screwed up so that the damn thing will work.
It’s a good thing that Fox TV is showing the second of the Star Wars prequels in about 20 minutes. I’m in need of a good brain flush. I watched the first one a week ago, and I found that it was actually better with commercials. Kimberly hasn’t seen the one that’s on tonight, but she’s out at a rehearsal. (I told her it didn’t matter; I can’t remember anything significant happening in this one. There were clones and droids, Anakin is a petulant teenager whom Padme marries for no apparent reason, and a whole Jedi-meets-Gladiator bit, I think that’s it.) We’ll be seeing the new one tomorrow night, at the great Cinerama theater downtown.
Why was I banging my head online this way? That’s a bit complicated.
Kimberly has her own blog, which, like this one, is hosted on blogspot.com, a free service of Blogger, now part of Google. Blogger is a pretty good way to get started in blogging, but, as you continue using it, you discover that you are limited. The biggest limitation is that Blogger is often slow, or just downright unavailable, or fails right in the middle of creating a post. After this has happened a few times, it gets really old.
So Kimberly has been dreaming of leaving Blogger behind for a system more under her direct control. We are already paying for a website, nosmallplans.com, with a pretty reliable hosting company, so she’s been imagining having her blog there. Months ago, I put my political blog there, though I was still using Blogger as the front-end, a half-way solution at best.
This weekend we finally started to make Kimberly’s dream come true. There is free open-source blogging software available, and today we spent time installing one, called WordPress, and configuring it. The brain-numbing part of it was figuring out which hoops to jump (or not jump) through because we wanted it in a different directory from my website, to which we had previously pointed Kimberly’s very own domain name.
As is often the way of such things, the final answer, when I figured it out, was blindingly simple, and my problems were the result of misinterpreting confusing documentation, imagining it to be more complicated, and no doubt an occasional typo at the wrong moment. All of which were aggravated by a slowdown at our broadband company, and an unusual technical glitch at the host company, which required an online chat with their support staff.
But I am able to end the day knowing that all the software is in place, and working correctly. Still remaining is all the work of setting up the new blog template, and copying and converting the contents of the old website into the new format, but thankfully, that’s Kimberly’s job.
Still, the experience will make it easier for me to use WordPress to set up version 2 of my coaching website in the form of a blog. And spending more time rooting around in the directories, and using the tools provided with my hosting account, should make it easier if and when I want to add mailing lists, shopping carts, or other bells and whistles. I went to a coaches networking meeting on Tuesday, and there was a presentation got me excited about future uses of my website in support of my coaching business.
(Also at this meeting were a couple of my teachers from my coach training, and they were very happy to see me again, and hear that I was back in action. One of them has offered me the opportunity to write a piece for a book she is putting together. But that’s another post, for another day.)
As many of you know, before my diagnosis I was starting a new career as a life coach. I was finishing up my last class, and starting the process of lining up more paying clients. That was one of the first things put aside in order to confront the Squamous Monster.
Since then, I’ve had plenty of time to contemplate the irony of having cancer appear in my mouth, just after committing to a career that primarily involves talking to people. I’ve also had plenty of time to worry about the surgery’s effect on my speech, and wonder if someone would hire a coach they had trouble understanding.
Most importantly, I wondered when I would heal enough that I’d have the energy to do coaching again. I’ve been pretty wrapped up in my own struggles. Being a good coach involves being able to focus on the client, and keep yourself to one side, in a way that was neither appropriate nor possible for me for a long time.
So it is a sign of my increasing familiarity and acceptance of my new normal that I have been spending the last few weeks preparing to dive back into coaching, and heading for the day when I can announce to the world that “I’m back in business!”
I’ve dealt with my personal issues about my speech through the tactic of actually talking to people. People seem to understand me just fine. I’ve even successfully coached a client who never knew me before the surgery. There is no problem.
Trickier has been the whole “having my own s**t together” aspect. I knew I could handle one client OK, but could I imagine multiple clients? Could I handle the focused effort of setting up a practice: finding clients, finishing the last details for my coach training certification, implementing a marketing plan? At the beginning of this year, the answer was “no.”
But now the answer is “Yes!”
In the last month I’ve turned a corner. I’m no longer preoccupied with my recovery in the way that I was. And having dealt with a lot of my emotional stuff, I now have energy I want to devote to other things. Positive things. Moving forward in my new life things.
It is true that my body still tires easily, and I’m not swallowing as much as I’d like. I’m working on that, trying to get more exercise and seeing a new acupuncturist (who actually needles my tongue!) That’s just part of life here in New Normalville. I’m not spending time wrapped up in it, or beating myself, or the universe, up over it. Life goes on.
Conveniently, during a coaching session I don’t have to run anywhere or eat anything. It works out quite nicely.
I’ve had two final tests for myself to see if I was really ready to dive back in. The first was to revise my website. I’d put one up back in 2003, but I felt it didn’t represent me anymore, and besides, it was really ugly. I figured that if I could focus enough sustained effort to make the thing look prettier, and feel good enough that I could honestly rewrite the text, that would mean something. It became a way for me to gut-check myself, and make sure I was really OK with going back to work.
I’m happy to say the success is now posted, at http://www.nosmallplans.com . It’ll be evolving over time, but test 1 is complete.
This post is the final test.
I’m hereby announcing to my friends, family and greater blogospheric fandom that I’m back in business. Now.
And I am going to shamelessly ask for your help. I’m looking for clients. I expect some of you might want to use my skills, and almost certainly some of you know someone who could benefit from working with me. Please contact me, or tell that person about me. I do my coaching by phone and email, so this goes for those of you who live far away, too. C’mon folks, I’ve got a lot of talent and skill; we can’t let that go to waste! (Please?)
For more details of what I actually do as a coach, please read the website. In a nutshell, I help people see new perspectives and approach their life’s challenges in a new way, whether that challenge is getting around to cleaning up your house or trying to find an emotionally rewarding career, or living with a chronic illness. I ask questions, provide exercises, and offer support to help people get “unstuck”, or to see a way through a tangled mess. I’m pretty good at it.
So please help me get back to it. And if you can’t send me a prospective client, do send my your good wishes. Your support since the start of this adventure has been wonderful, and I still rely upon it.
I’ll keep you posted on how things are going.
Officials in the Pacific Northwest today announced the final clear-cutting of the Seattle National Weed Refuge. Naturalists and botanists reacted with sadness and criticized what one called “the end of a major national resource.”
Though it is a private facility, the SNWR’s end follows on the heels of several Federal policy decisions that have also angered environmentalists, most recently approval for drilling for oil in the Alaska National Wildlife Refuge. Seattle operators refused to comment on future plans for the territory, but geologists have stated that there is no likelihood of finding oil there.
Robert Plant, of the University of Washington’s Botanical Sciences department, decried the destruction of the facility. “It’s the loss of an important resource of genetic material, and a blow to science. They must have had fifty different species of dandelions, and the crabgrasses? Incomparable.” Other scientists also spoke of the biodiversity in the refuge.
Established shortly after the millennium, the weed refuge developed great value since September 11. Several scientists were using the facility to study the possible ecological development of suburban areas following a mass evacuation, such as in the wake of a bioterrorism attack, or due to global warming. “It was a perfect laboratory,” said Jim Sung Ouid, of the University of California, Davis. “It was almost like a normal lawn that no one had attended to for years.”
Municipal officials in Seattle were not sorry to see the action. “It’ll save us work”, said one official, referring to a possible citation of the refuge under the city’s public nuisance ordinance. The reaction of neighbors was mixed. “Weed refuge? I thought that place was a crack house,” said one. “Damn, I guess I’d better cut my grass now,” said another. “At least that annoying buzzing is over,” said a third, referring to the sound of the high-speed string cutters used to shave the property.
Owners of the former weed refuge have been silent about future plans for the site. Some observers have suggested they may attempt to grow a conventional lawn there, though the huge cost and effort involved in such a move leaves many skeptical. Local property owners and naturalists will continue to watch for future developments.
It’s hard to describe how it feels when my body has one of its off days. With Kimberly, I’ve adopted the phrasing that I am out of “oomph.” Today I feel like someone has stolen all my “oomph.”
Earlier this week I was pretty active. Wednesday morning it was grey out, so I did my workout on the treadmill. But later it got sunny and warm, so I went out to weed-whack the backyard. That was a lot. Then Thursday I had a pre-existing date to walk around the neighborhood, and, since I was actually feeling pretty good, that was long. Now, as predicted, two days later, I am wiped out.
It’s close, but not quite like feeling that my body is made of lead. It does feel like there is an extraordinary force of will required to move. The same degree of intention that, on a good day, has me up and moving, gets no real response. It’s like I need to step harder on the gas pedal than normal. I imagine it’s like being on a planet with more gravity, but frankly, that’s not a science-fiction scenario I’d like to try. It’s like my muscles need to work twice as hard, or they are missing some basic level of vitality and energy. The sense of exhaustion is so thorough that it brings to mind the phrase “bone tired.”
Sometimes there is a mental fogginess that goes with it, but too often I’m relatively clear-headed. This is when I most feel like I’m trapped in an old jalopy. My mind runs through list after list of things I want to be doing, but I’m lucky to get myself out of bed and fed. This is when I get to do my spiritual work on acceptance. (I’m not so good at it.)
All my big plans for today will have to wait for tomorrow, or whenever. Sigh.
Recovering from a serious illness is a mental and emotional process as well as a physical one. For me, now that the physical has reached a fairly stable plateau, the emotional and mental recovery has taken center stage.
It’s trickier than it might seem at first. When you get a cold, or the flu, you’re sick for a little while, but then you get back to normal. Your life continues as it did before, and you go back to being who you were, even if you’re temporarily busy trying to catch up.
When you get sick with something chronic, or something that makes permanent changes, it isn’t so easy. Try as you might, you can’t get back to “normal”. That pre-disease state is gone, never to be repeated. You can’t go back to where you were before it all started, and pick up where you left off.
One of my internal strategies for fighting cancer works well during the physical treatment phase, but not so well after. Part of me fights the disease by essentially “sticking a pin” in an image of myself before the disease, and resisting the effects of the disease that pull me away from that. I’m in a tug-of-war, and stubbornly hold my ground.
Which works really well if what I have to do is persist through treatment after treatment. But when the treatment is over, that drive to return to the pre-disease image can become a problem. Because there is no room in that mindset for accepting the changes that have happened. There’s no permission to acknowledge “losses”, accept them, and move on. And, as you might expect, constantly comparing who I am now with who I was before isn’t so good for my self-esteem.
So I’ve been working on letting go of “getting back to normal,” and working on getting to a “new normal.” I’ve been consciously working on accepting these scars as part of “me”, and trying to believe that I might one day see them as emblems of strength and bravery, instead of deformities and wounds. (That’s still only an abstract possibility at this point.)
I’ve been working on reconnecting my body to my sense of self, trying to shift out of the sense that “I” am just a mind-thing living in a brain, driving around in a cantankerous jalopy of a body. This involves tuning in to a bunch of sensations I’ve been screening out for some time, including everyday aches and pains, and the memories of others. It involves thinking about eating and nourishment as something less about calculating fuel mixes and minimum requirements, and more about taste, pleasure, and spiritual, as well as physical sustenance. It involves exercise for enjoyment and not as a rehab chore.
For some time, getting to a new normal has been about letting go of the old normal, and feeling my way into the new reality. There’s a lot of experimentation. What is this like? Can I do that? How does this work? Often, the answer is familiar, because it is like it was before. But not in every case, and not in some important ways. It’s hard to not get frustrated by the inconsistency. I’m like I was, but I’m not.
I want there to be rules. I want there to be known expectations. I hate having so much unknown. I hate having to carefully consider the vitamin capsules in the jar I just picked up, wondering if they are too big for me to swallow, and knowing that I won’t know until I try. Part of me says, no, they look too big, get the smaller ones. Part of me says, I’m getting better, maybe they’ll work. A simple purchase becomes an internal struggle between my cautious side that wants to take care of me by avoiding disappointment (or choking) and another side that knows the only path to improvement is trying new challenges. I’m doing that over and over again, walking the boundaries of New Normal. (As it turns out, they aren’t too big, but they are hard to get down.)
Lately, I’ve been made aware that there are whole dimensions of New Normal I hadn’t even started thinking about yet. A couple weekends ago, Kimberly and I went to visit our musician friend Erin in Oakland. It was a wonderful visit, full of old friends, music, interesting conversation, and good food. Erin, in addition to music, has a fine eye for art and design, and enthusiastically enjoys many things in life. She’s a great cook, a habit she indulges in her new kitchen (the remodeling of which was covered in her blog). She made me some wonderful soups from scratch, rising to the challenge of elegantly feeding someone on a no-salt diet with limited swallowing.
That visit made me realize that a still-larger shift of attitude awaits. Unconsciously, I’d been living in a world of “surviving” or “not-surviving.” I’ve been so focussed on “surviving” that I’d pretty much lost track of anything so radical as “living large”. The reminder that, instead of merely not-dying, I could energetically embrace life, with enjoyment and passion, was a real eye-opener. “Oh yeah,” I’ve been thinking, “I remember stuff like that!” It’s been a while.
So, there’s a lot of work ahead. I’ve made a start. And, having realized the challenge, I hope I can succeed with this aspect of healing. It’s time.