Interdependent Living

When I first started exploring moving here to Seventy Five State Street while receiving Chemotherapy this summer, I was told I had my choice between two levels of service: "Assisted Living," which included a great deal of nursing care and various other 24/7 personal services; and "Independent Living," which is basically a furnished apartment, three meals a day, weekly housekeeping service and transportation to and from my medical appointments. Naturally I chose the latter, especially since it was half the price, and in an emergency I can always call upon the nursing staff anyway and settle up the bill at the end of the month.

But the truth is (and despite receiving an "A+" from my Occupational Therapist on my ADLs/"Activities of Daily Living"), I'm not really "independent." I doubt any of us are. I need assistance; I need help with such basic things as keeping track of all my prescriptions and medical bills, making my bed, picking up my room, cleaning out the fridge of uneaten leftovers. Not to mention the really important things. My dependence upon the assistance and good-will of others is staggering. And it is my recognition of that dependence/interdependence which forms the foundation of my theology of Gratitude, Generosity, Humility and Service.

Of course, those old-time, old-school "classical" corpse-cold Unitarians of the "Golden Age" used to talk about these same values in terms of "Self-Culture" -- the development or "cultivation" of our souls, through a series of probationary "trials," into mature spirits worthy of thinking of ourselves (and behaving) as God's children. The emphasis we read so often in the inspirational literature of those days on self-discipline and individual self-reliance. service, self-sacrifice and "being of use" are all part of this larger paradigm regarding what it means to be privileged members of a larger community, and an accompanying sense of noblesse oblige -- the conviction that of those to whom much has been given, much will be expected. Advantages do not free us from our obligations. If anything, they only make them stronger.

That's the old-school way. How ironic that so many of those dead white males (Theodore Parker and Henry Ware Jr. among them) died so young....

When the Student is Ready

...the Teacher will appear. How often have I heard and seen that old proverb? And yet in my experience truer words were never spoken. Here's the more interesting question. How does one know when it is time to put in an appearance as a teacher? Or is this likewise just part of the on-going, disciplined learning process, in that I always tend to learn far more from those I teach than I feel I impart to them myself.

I'm still pretty much on the steep slope of the learning curve when it comes to being a cancer patient/survivor, and so far I've enjoyed the benefit of a lot of different teachers. But there's a price to be paid for every lesson learned as well, often accompanied by physical pain. Like a lot of "healthy" Americans, I had been in the habit of "multi-tasking" -- which is basically a tired euphemism for trying to do more than one thing at once in the attempt to crowd too much activity into too little time. And what I am discovering is that this is rarely a good idea -- especially when it comes to living with a serious illness -- even though it may seem like you would want to try to crowd as much as you can into whatever time you have left. But even the natural, subconscious reaction of getting up a running start before hitting a bump in the road typically hurts a lot more than it is worth. Much better simply to slow down, take a good look at the situation, and then cross over the obstacle as gently and smoothly as possible...at least if you're the one in the wheelchair!

So now I'm trying to learn how to take that lesson to heart...and how to teach it to those around me. I need to figure out how to live a more "spiritual" lifestyle focused on feeling "centered" rather than accomplishing a lot of "tasks" -- a lifestyle that is at once less hectic and yet ultimately more productive, and which includes plenty of time for activities like reading, writing, meditation and contemplative reflection, as well as opportunities for exercise, physical therapy, and the like. A long nap in the middle of the afternoon? Why not? Especially since not taking the nap means paying the price of that overindulgence later.

In any event, Worship Committee meeting tonight; thank God they have all agreed to come here. I really am proud of my people. I'm trying to keep up. Or at least to keep my eyes open until 9 pm.....

Memorial Day

Thought I'd make just a quick entry here, since the weather is beautiful, I'm expecting even more out-of-town visitors, and really don't intend to spend too much more of my day huddled over a computer screen rather than engaging with the real world face to face. But I do want to report that I was feeling good enough yesterday morning to attend church, and had a very lovely time: heard colleague Peter Richardson preach (as you might imagine) a VERY solid sermon on "the inherent worth and dignity of every person," and just delighted in being part of the congregation. And, of course, left feeling more energized and inspired when I arrived...which was a nice reminder that this is how I want EVERYONE who worships with us at First Parish on a Sunday Morning to feel as they return to the world afterwards.

And then, when I returned home (for those of you who don't religiously read all of the comments to this blog as well as the blog itself) I found this waiting for me:

You are an amazing man. Maybe you'd rather be blogging about living on a boat, floating free of of the constraints of a land bound life, but the humor and honesty and love with which you tell your story is both heartwarming and heartbreaking. I do live on a boat and have the life you dream of so please allow me share it with you vicariously. Welcome aboard! Kathleen Jones www.dejavuchronicles.blogspot.com

So part of yesterday afternoon at least I was able to spend in the Western Caribbean, enjoying the virtual hospitality of some expatriate Maniacs with whom the blogosphere has somehow mysteriously connected me simply because of shared interests, a common passion, and some some sort of mutual acquaintance. Just Like Church.

And then finally, this from the UU World. I've been a huge admirer of Forrest Church since the moment I met him back in 1978, when I had first started working with Rhys Williams as a Harvard Divinity School Field Education Student intern at the First & Second Church in Boston, and Forrest had just left his position there as the Assistant Minister in order to become the Minister at All Souls. This was all a little controversial at the time, because Forrest had not been through the MFC and was not in Fellowship with the UUA, and had basically been put forward by Rhys for the vacant pulpit at All Souls outside of "official" UUA channels. Had I known then what I understand now about the historical connections between All Souls and the Second Church in Boston, I probably wouldn't have felt quite so scandalized by all that as I felt at the time, even though subsequent events I think have shown pretty dramatically that (notwithstanding Forrest's own human foibles) Rhys's instincts were correct. Gosh -- 30 years ago. Pretty amazing when you stop to think about it.

Ended up the day with a road trip to Bonobos -- the local pizza restaurant where I often ate dinner on Sunday evenings "back in the day" before my diagnosis. Afterwards, Erik and I kicked back to watch the first three quarters of the Lakers/Spurs game, at which point I simply couldn't hold my eyes open any longer, and called it a night. But Bonobos was another great morale booster -- barely accessible, but we managed...and while we were there I met someone sitting at the next table who has just moved to the West End from San Diego in the past week, where she had been a member of the Unitarian Universalist Congregation there for over a decade! So another serendipitous encounter on the wheelchair ramp of life. It's one of the great things I love about living in the city, and one of the things I miss most about not being able to get around too much on my own any more.

Or at least not for the time being....

Breaking News

The story I was anticipating in last week's Portland Press Herald finally appeared in this morning's paper; a very sympathetic and even flattering portrait of our congregation, I think; and it has briefly made me a small celebrity down at the breakfast table. I won't say "short-lived" celebrity, because I don't want to lift-up any of those other connotations, but let's just say that already whatever gloria might have been attatched to me from being front page news (well, the front of the RELIGION page) is already transiting.

I was especially interested in the way the reporter handled the business about the boat, which I'm discovering is a theme that seems to connect on a variety of different levels with a lot of different people. It's simply something I've had the notion to do for a long time: maybe just for a summer, maybe for a year or two, maybe for a lot longer depending on how it goes. But the fact that it makes such an excellent metaphor for so many of the other things people struggle with as they struggle against illness now gives that daydream a whole different trajectory, as well as pointing to some the skills and values people draw upon to help them survive. What does it feel like to be a small, leaking vessel on the vast, empty ocean? And will tenacity, good seamanship, and a bounty of optimistic hope be enough to bring us home again?

Steph left this AM at Zero-Dark-Hundred to attend her 10th Mount Holyoke College reunion, and especially to march in this morning's Laurel Parade. Again, I would have loved to have been in the condition to drive out there with her, attend a few of the ceremonies, and just spend a little more quality family time with much beloved daughter with whom I am well pleased. Instead, here's a photo of Margie and me from a MHC event ten years ago; can't remember whether it was this weekend or one of the parent's day functions, but for some reason I'm thinking this. Have a lot more photos of that weekend as well, but not on this computer. Where ARE those flash drives when you really need them?



In any event, took Steph out to a very nice dinner at a local restaurant named Katahdin instead; $100 check for two WITHOUT wine (I'm not allowed because of the narcotics, and she's trying to eliminate alcohol, caffeine, refined sugar and dairy from her diet), but I think we got our money's worth. Steph had salmon and I had a steak, and of course we had to share. But I did feel a little guilty eating the homemade coffee ice cream afterwards while she sipped water with a wedge of lemon.

Weather here Memorial Day weekend is supposed to be fantastic, and my brother Erik is driving up today from Connecticut to enjoy it with me, so I may have to take a little vacation from being a Cancer Patient and enjoy myself a little too. I wonder whether the Sea Dogs are in town. Today I feel good enough I might actually be able to make it out for a game.

Luvyabye!

Finally got back into my study at the Eastland today for the first time since the weekend before I moved here to 75 State, when My Favorite Wife and Numba One Son managed to accomplish what was (for me, at least) potentially the most emotionally demanding aspect of this entire experience, which was helping me sort through and store many of my books and personal papers, which needed to be moved out of the way so that I might eventually become to move into that space later this summer. I can't BEGIN to tell you how stressful that was for me...for everyone, really...especially given the common emotional dynamic that one man's treasures are often his ex-wife's garbage/garage sale...but somehow we managed to work it out (despite Jacob's undisguised disgust with my over-the-top packratishness, and what I was sure at one point was going to be an outright mutiny); but now, two weeks later, I can really appreciate how hard they worked to make me happy, and how happy I am with the result. The place looks great! I can hardly wait to be independent enough to get there more regularly on my own, and and get back to work surrounded by all my books and papers. Peter Raible used to tell me that no one ever went to their deathbed wishing they'd spent more time at the office. But I may be the exception that proves the rule.

This was kind of a busy day for me medically as well. Daughter Stephenie is here in town en route to her 10 year Mount Holyoke College reunion, so she got stuck carting me around to various errands and appointments today like a soccer mom -- medical supply store, my study, Chemo appointment and a pharmacy run -- once again we've tweaked my narcotics in order to try to get better pain control for this "thing" with my back, and are starting to talk again about some additional treatments that might restore a little more structure and stability to the bone which has been eaten away by the tumor. Moreover, because I'm such a "tough stick," it looks like they are going to try to fit me for a port in my chest where I can receive the IVs more comfortably and conveniently; and they've also ordered me an actual hospital bed again to see if maybe I can sleep for longer than two or three hours at a time at night. Of course, on that front there's also the whole issue of my (currently) untreated sleep apnea, and getting back in to see the Pulmonologist about that again. Good new is that today's Chemo was the light one, and next week I get a week off from treatment altogether. Then we're on to the second cycle...and the third, and the fourth....

Whew! Anyway, I also had a very nice smile today listening to my daughter talking on her cell phone, and overhearing the familiar "luvyabye" at the end of the call. God knows how this became our little family sign-off; it's so familiar to us all it sometimes seems to me that we hardly hear it, but it was very strange to hear it out loud rather than over the phone myself; and when I mentioned it to Steph she remarked about how many of her friends think it's kind of cool how routinely our family tells one another that we love them and are proud of them...it may SEEM routine to us, almost hardly worth mentioning, and yet in families where it never gets mentioned at all....well, I guess it seems very different indeed. Anyway, just something I've been thinking about while sitting with a needle in my arm reading in Sports Illustrated about the Greatest Football Game Ever Played, the 1958 NFL championship game between the Colts and the Giants. My earliest childhood memory, actually; although mostly what I remember was how excited my father and grandfather were.....

Luvyabye!

Happy Birthday, Jimmy Doyle!

Recently I've taken a little pride in the mathematics that if you include the time I spent in seminary, 2008 marks the beginning of the third decade I have spent in "ministry," broadly defined. But just to put that in context, today one of my "messmates" here at 75 State Street celebrated is 93rd birthday...which means that he has been RETIRED from his career as a US Postal Service letter carrier (and supervisor) for longer than I've served in mine. Which is humbling, to say the least.

And such a great guy too -- sharp as a tack and with lots of stories to tell, a huge family he is enormously proud of, a good appetite, and (to paraphrase John Huston from "Chinatown") he still has a few teeth in his head...and a few friends in town. His biggest complaint? Same as mine, really -- impatience that it is taking him so long to recuperate from his most recent stay in the hospital....

My two other messmates (I'm not really certain what else to call them) are also interesting in their own right: John is also in his 90's, also a retired letter carrier, and also has stories to tell...although he is really more of an observer than a storyteller, and thus a wealth of information about other people here in this community. Jeff is kind of a mystery -- younger, I think, even than me, and not especially forthcoming about anything that matters, although always with something to say about sports, the menu, the weather, whatever. Not even John has him figured out yet. And they've been eating together at that table a lot longer than I have.

In any event, that's really all the news I have from here at the moment. Happy Birthday Jim! I'll see you tomorrow at breakfast.

Sunday Afternoon

I know it's not fair, and I know life isn't fair, and I also know that on the whole scale of fair and unfair I have been blessed with so many advantages it's not really even fair to complain. But I SO wish that I could just stand up out of bed and walk six normal, painless steps to the bathroom in order to, you know, answer the call of nature. It would make such a HUGE difference in the quality of my life right now. i feel lucky that the nausea is just a little queasiness, and that the aches and pains and low-grade fatigue are nothing more than than are. I don't mean to whine about anything, really...not even the hit or miss annoyance of being an internet pirate (which is the main reason I haven't been posting too regularly...I can't find a strong signal to piggyback on). But sometimes it really is the little things that get you down. The little things you can't get away from even for a little while.

Missed church today, and was pretty disappointed about it -- except I also just knew that I really wasn't up for it. This was the Sunday of our Spring Festival, which I would have liked to have attended... even though most of it wouldn't have been especially accessible to me. Have no idea how well it went or how well attended it was. But I imagine the folks who showed up at a good time.

I was also interviewed briefly by telephone last Wednedsay during the last half-hour of my chemotherapy by a reporter from the Press Herald, for an article I thought might appear in yesterday's paper. But I didn't see it, so perhaps he never got it written. Not that I imagine my responses were too coherent. Asked a lot about the spirit at the church, and my impressions of how things were going, and I gave him the same answer I always give: the energy on Sunday Mornings seems very good, I know a lot of people are working very hard behind the scenes to make that happen, and that it has also created some new opportunities for other people to step in and join them, and that the hardest part for me is being forced to sit on the sidelines helplessly. But then he also asked about the "boat" -- the Dream Boat, the "dog-gone" boat...which I thought was pretty obvious was just something I was day-dreaming about, more of a notion than a goal. But also, I realized, a metaphor -- of freedom, independence, self-reliance, persistence, tenacity and endurance...a small, well-found vessel on a large and dangerous ocean....

And yes, somebody bought it -- the one I'd been dreaming about. So they didn't really "sell" MY boat. Somebody bought it. Just like I knew they would. Because it was a great deal, and I hope will give someone a great deal of pleasure too. And the nice thing about being me is that there are plenty of more boats out there to dream about. At least when I can get on line....

What a Difference

...a day makes. Or maybe a couple of days. After kind of a rough first night, I'm actually settling into my new accommodations here quite comfortably -- great view of the harbor, with soundtrack accompanyment by a chorus of gulls...just like living on a boat and waking up on the ocean...or at least close enough that I can close my eyes and imagine. Helps a lot to have my own pillows from home as well, and not to have to share with a roommate and his TV. I was getting SO tired of "Deal or No Deal...."

Also had my first chemotherapy treatment yesterday, so today is pretty much all about trying to kick back and get acquainted with the side effects....and the side effects of the drugs they are giving me to counteract the side-effects. The treatment itself was no big deal: sat in a chair for about four hours and watched "Ratatouille" on a portable DVD player, then made a pharmacy run to pick up new prescriptions and also lots of tender tummy comfort food for the fridge. Which turned out to be a very wise decision, given the state of my appetite just now. Let's see, we add nausea and fatigue to my normal pain management, then what else...headaches, blurred vision, MORE drowsiness....I've pretty much been sleeping through everything for the past 12 hours, and trying not to give it a second thought. And so far at least, that strategy seems to be working pretty well.

Whew....

And I'm beginning to wonder whether maybe I pushed this transfer to independent living a little too quickly. VERY rough morning this morning, which I don't even want to try to describe...but I'm feeling a lot better now, and maybe in a little better position to evaluate whether today was just another round of first day trial and error, or if I really have overstepped myself and need to think about stepping back a little.

The thing is, I've been operating on the assumption that so long as I was actively receiving Physical Therapy, I wasn't allowed to begin my Chemotherapy...which would have been true if I had been admitted to the New England Rehabilitation Hospital two weeks ago. But I'm not so certain that the folks at Seaside Rehab feel the same way, which really changes the rules of the game a little. And it's a bit of a double-bind...because I really don't feel like I can procrastinate on the Chemo much longer, but it's also really obvious to me that I need an awful lot more Rehab -- and whether I'm going to be able to get that as an outpatient living here at 75 State or not really isn't that clear to me yet. And there are insurance issues as well, which frankly I don't understand...and the whole pain management piece is still a little dicey. That was the first tough part at 6 am this morning... But you know that's got to get better too.

Anyway, I'm going to try it another night here, see if I can be a little better organized about the whole process...then talk things over carefully with my treating physician tomorrow before chemo, and with the visiting outpatient Physical Therapist when she stops by to evaluate me on Thursday. And then we'll see. I really would like to be able to walk again at some point. Walk, climb stairs, shoot hoop, crawl around on a pitching deck while sailing to windward. That sort of thing. Not to mention getting back up to my office, and into the pulpit again.

Moving Day (again)

And once again, it's Moving Day. Another ordeal of packing and unpacking, arranging transportation, figuring out my discharge orders, filling out paperwork, settling in, reconnecting to the internet, getting organized, then disorganized, than reorganized again, sorting out new schedules, new routines, and all the rest. And this STILL doesn't get me all the way home; although it does get me within a few blocks of home, and perhaps a few months closer to actually moving back into my old apartment again. And better yet, perhaps only a few weeks closer to Parker moving back in with me, once the first floor room is refurbished and available. Still a little disappointed that I won't be able to move in to that room right away. But I'm so grateful to be moving there at all, I don't really feel like I have much cause to complain.

I'm a little concerned about the potential for my new "independence" to contribute to additional social isolation as well, absent the imposed routines of meals and therapy and nursing care. And about my well-known tendency to push myself a little too quickly to try the things I know I shouldn't, rather than sticking with the routine and letting things come to me "in the fullness of time." And I'm worried about how I'm going to respond to my chemotherapy, and whether or not it is actually going to be effective in treating my cancer. Just a little worried though. Which is ironic, since it really ought to be the ONLY thing I'm worried about.

But instead I simply note that it looks like they sold my boat over the weekend. And notwithstanding the rather unlikely, narcotic-inspired fantasy that they sold it to someone who wanted to buy it as a gift for me, I hope instead that whoever ends up at the helm of this great vessel feels some of the joy I've experienced simply daydreaming about living aboard her myself...that she proves safe, and seaworthy, and not TOO great of a hole in the water into which to pour money. One of the best things about dreaming about boats is that you can always find another one to dream about relatively easily. This was a good one though. I sure wish I'd had a chance to step aboard her one time in real life, before her new skipper sails her off into the sunrise....

Mother's Day

And I feel like I've fallen a bit behind in my posting here -- lots on my mind as I get ready, at long last, to transition back to what we are designating as 'independent living" -- which in my case will still mean confined to a wheelchair, depending on others for rides, meals, cleaning and laundry, and assistance with many of the various other routine "activities of daily living." But at least now I'll be responsible for managing my own medications, and will be free to set my own schedule to come and go as I please.

Nice church service today too. I had a very small part helping out with the child dedication portion of the service, but mostly I just sat down front and enjoyed the experience of being in church. I'm really, really, really looking forward to feeling strong enough to leading worship on a regular basis again. But even this little bit today helped me appreciate just how far away that day really is.

I've also been thinking an awful lot about Steph 'n Jen -- my daughter and her best friend, who were inseparable as teenagers (so much so that a few people assumed that they were one girl -- "Stefenjen"), and the profound grief I know they are experiencing in the aftermath of Jen's mother's suicide Thursday. Mary. "Mère" Or maybe just plain "Mom." One word really does say so much. And such a tragic loss for us all.

And of course my own mother is also very much on my mind this morning. It was a year ago today that she waited until AFTER I had preached my first sermon as the Candidate here at First Parish to inform me that her cancer had returned...the cancer that would eventually take her life in a matter of months. I've reflected a great deal about her decision to try to shield me from the "distraction" of worrying about her on a day she knew was crucially important to me. Just another typical act of selfless generosity. They happened so often when I was growing up, I never really had occasion to think that much about them at all. Now I think about it all the time

Anyway, received a very nice card last week for my Installation from my former staff at the First Religious Society in Carlisle. You may be able to make it out on the left in the photograph of my dresser: it's a Boston Terrier, dressed in a bow tie and about to eat a T-Bone steak...and the sentiment is simply "Congratulations" and "Every Dog Has his Day." Love it. It's perfect.

And now here are a few photos from the Installation service itself, compliments of my brother Erik.

Receiving the Stole

The Laying on of Hands

PRAYER

Spirit/God -- who knows the prayers of my inmost heart even before I know them myself...teach me to wait patiently and listen quietly for the answer to my inmost prayer, that I might discern with clarity the deep longing of my soul. Make me an instrument of your peace and comfort and healing, and give me the strength I need to fulfill the responsibilities to which you have called me, that I might share with others some of the many blessings that you have so generously bestowed upon me. Help me to remain faithful, trustworthy, optimistic and confident, even in the knowledge that nothing is ever certain, and that ultimately all things of this world pass away. Help me to live a life of humility, gratitude, generosity, hospitality, understanding, forgiveness, and service...and to experience that profound and sublime sense of joy "where the soul's great longing meets the world's great need."

Speechless

And now suddenly and without warning comes word from the other Portland that my daughter's best friend's mother took her own life this past week. A complete surprise to everyone who knew her, and totally out of character to the person I knew...a happy, upbeat, hard-working, down-to-earth woman who was like a second mother to my own daughter, just as her daughter was like a second daughter to us. I just don't get it, and I don't want to get it. I can't imagine the kind of pain she must have been feeling in order to take this desperate step, but it must have been terrible when I weigh it against the pain I know her loved ones are suffering in its aftermath. Me included. I only pray that she may now find whatever peace may have eluded her in this life, and that all of us who loved her and cared for her may find strength and comfort and support in one another, as we mourn her loss.

A Pain in the A**

And that's really what this all adds up to, these past 42 days...an excruciatingly debilitating pain in the ass that has sent me to the hospital, landed me in a wheelchair, left me effectively homeless, and essentially disrupted every other aspect of my "normal" lifestyle, including treatment of the Lung Cancer which is at the root of all of these problems anyway. But I must be getting better, because I'm starting to feel good enough to complain. I have a scheduled appointment with my medical oncologist tomorrow, but it still looks now like I'm going to be here at the Rehab through the weekend, while we continue to tweak my pain medications in order to get them just right. Hope to transfer to Seventy Five State Street bright and early Monday morning, and start my chemotherapy Tuesday or Wednesday. Jacob and Margie are both going to be here this weekend, and I'm hoping they can help me with some of the details of making this move happen smoothly. I SO want to get up and about and out on my own again! But even that still seems a long way away, when I can't even stand and walk without aid.

Shadows

And I know I must be on the mend, because I'm feeling awfully cranky, and girls are starting to look good again.

Took another afternoon excursion yesterday to check out what will soon be my new digs at Seventy Five State Street. They have a perfect apartment for me on the first floor of the independent living unit, with easy access to outdoors plus a balcony overlooking the garden...the only problem is that it is now in the process of being refurbished, so it may be two or three weeks before it is actually available. In the meantime, they also have two different apartments available on the fourth floor -- both of which are a little nicer in terms of the amenities than the one I've picked out, but will require me to move twice if I'm discharged from here before the first floor unit is available. Details, details.

Also solved the mystery of my missing bifocals yesterday (which have been missing now for several months); apparently the carpet cleaners found them, still safe in their new brown leather case, just beside a couple of half-chewed pigs ears and an old rib bone that Parker had "buried" somewhere beneath the furniture in my apartment. Poor critter -- I guess those cataracts really are more serious than I thought. But at least now I'm going to be able to see a little bit more clearly when I read.

People keep asking me how I stay so upbeat, and whether it's really "real" or if there is also some sort of terrible "dark side" that I keep only to myself. And all I can really say is sure -- there are times when I'm feeling a lot less sunny than others, but mostly I'm pretty much "what you see is what you get." The really bad times (which thankfully are few and far between) tend to come late at night, when I'm feeling kind of alone, and I don't have very good pain control, and let myself give in to the feeling of being scared of the dark -- all of the things that I don't know and can't control that might easily go wrong and....you get the picture. I want my mommy and she's not around...so I just have to remind myself that there's nothing to be afraid of, and that whatever happens it's going to be OK...or at the very least, that I can't make it any better by worrying about it. And that it's also OK to be afraid of the terrible...and that courage is not the absence of fear, but rather the "heartiness" to act positively DESPITE one's fear. And then I call for more pain meds, and try to think happy thoughts for awhile.

The other times I feel discouraged seem to have a lot more to do with frustration than with fear itself. Especially now that I'm starting to feel stronger, I also feel the impatience welling up within me: I'm annoyed that I can't just get up out of this stupid chair and return to my old life -- free of cancer, of course -- and maybe 40-50 pounds lighter in the bargain. But that's just not going to happen either -- or at least not overnight. But if I just keep doing what they have me doing now, there's a pretty good chance that I'll be approaching SOMETHING like that by September...or at the very least, will be a lot closer to where I want to be than I am precisely at this moment. And so the answer to frustration and discouragement is tenacity and persistence...just as it is in every other frustrating and discouraging element of life. So maybe I should count myself lucky that I've experienced so much of those things in times past, and have the skills now to cope with them.

And here's the other funny thing, which I guess you could call a form of survivors guilt. But as grateful as I am for the truly astounding amount of resources I enjoy: financial, emotional, relational, spiritual and right on down the line, I also feel a little uncomfortable about the kinds of privileges and advantages those resources bring with them. I meet so many people these days, just in the ordinary course of receiving my own treatment, whose resources by comparison are so limited, and it just makes me wish that things were otherwise...that everyone could enjoy the same level of support and assistance that I enjoy. It's just an observation; I don't really have an answer. But it's on my mind a lot, and reminds me constantly of just how fortunate I truly am.

Afterglow...

And people here at the Rehab keep asking me how my "Big Day" went, and I have a hard time knowing just how to respond. Yes, it took a little out of my physically to do all the things required of me...but if anyone thinks that sitting on a church chancel and paying attention for an hour-and-a-half while all sorts of people you admire and respect say wonderful things about you is hard work...well, you have another think coming. My only disappointment is that even more people couldn't be there to share in that experience...but I also know that there are plenty of folk who would have loved to have been there if they could, but for some reason or another were unable to attend in person. And if anyone has digital photos I would love to be able to post a few here. Call Me!

Meanwhile, back at the Rehab, I'm working hard on three basic things in order to be able to be discharged at the end of the week. The first is pain control, as I move off of the Fentanyl patch and back to some sort of oral medication that will be easier for me to manage on my own. The second has to do with mastering the last of my "ADLs" or "activities of daily living"-- basically figuring out how to go about my daily business given whatever level of physical mobility I have at the moment. And the last, of course, is plain old fashioned physical therapy, and the attempt to build up the muscles I haven't been using for the past five weeks, so that I am better able to perform my ADLs with the minimum amount of pain and exertion.

Discharge plans themselves seem to be shaping up much more smoothly that I had worried they would. Next stop will be the Independent Living wing at Seventy-Five State Street, where I will be living on my own in an accessible apartment back on the peninsula, but will also be able to eat three meals a day in the dining room there, and receive transportation to my medical appointments. Will probably stay there through at least the first two rounds of my chemotherapy, and maybe a little longer depending on how that goes.

The next stop after that will probably be back to my study at the Eastland Park Hotel, which I'm actually looking forward to quite a bit. Will probably try to spend a fair amount of time there anyway this summer even if I am still living at State Street, since it's a good opportunity for me to catch up on some of the work which often gets neglected amidst all the "activity of daily living," yet is essential to the health and vitality of an effective ministry. An imposed sabbatical. And God only knows whether I will ever make it back into my walk-up apartment on Carleton Street. I'd only planned on living there for a year anyway, while I scouted out the city and decided where I wanted to settle down in a more permanent residence. Hadn't planned on loving the space, the neighborhood, my neighbors so much.... But I don't have to figure this one out today. My lease isn't up until the end of July, and until it is...well, visitors welcome.

The Maine Event

Yesterday's Installation service was truly amazing: my only regret is that I wish a lot more people could have been here to share it with me. Yet I'm also delighted by how many people were able to attend, and what a wonderful time we all had, both during the ceremony and at the reception afterwards. It was simply a magnificent occasion, as well as a fantastic opportunity for this congregation to celebrate itself and everything it stands for: its history, its mission, its identity and purpose and all the other important qualities and characteristics it represents in its unique position as Portland's Original Faith Community. "A Warm & Welcoming Place in the Heart of the City." I am SO eager and anxious to get back to full strength so that I can get right back in the middle of it all again. All in the fullness of time....

All in the fullness of time.

Started the day by coming in early for the Religious Education program's monthly pancake breakfast, which gave me a chance to rub elbows a little before attending the regular morning worship service, where I heard our District Executive, Mary Higgins, in the pulpit, and lit a candle during the Joys & Concerns. Afterwards I went back to the Rehab long enough to take a quick nap (and to see the Celtics pluck the Hawks), then returned to First Parish for the "Maine Event" of the day. Won't even try to describe everything that happened moment by moment, although I know maybe I should. Jazz, bagpipes, bassoon and violins...not to mention the Gay Men's Chorus and the First Parish Choir. A nice turnout of local UU clergy, along with a few good friends who came from a distance and, of course, Ted Anderson from Nantucket...who I invited specifically to preach the installation sermon. And a Trinity of local politicians, consisting of our Mayor, our State Representative, and the Speaker of the House. Installation Marshall Darrell Goodwin did a wonderful job coordinating all the details of the service, while food maven Janet Puistonen organized a reception to die for. And again, so many positive feelings and so much energy and enthusiasm. Everybody felt it. You really had to be there. Really....

GENESIS 32: 24-31

[24] So Jacob was left alone, and a man wrestled with him till daybreak. [25] When the man saw that he could not overpower him, he touched the socket of Jacob's hip so that his hip was wrenched as he wrestled with the man. [26] Then the man said, "Let me go, for it is daybreak." But Jacob replied, "I will not let you go unless you bless me. [27] The man asked him, "What is your name" "Jacob," he answered. [28] Then the man said, "Your name will no longer be Jacob, but Israel, because you have struggled with God and with men and have overcome." [29] Jacob said, "Please tell me your name." But he replied, "Why do you ask my name?" Then he blessed him there. [30] So Jacob called the place Peniel, saying, "It is because I saw God face to face, and yet my life was spared." [31] The sun rose above him as he passed Peniel, and he was limping because of his hip....

And I suppose this is just another of those ironic, serendipitous coincidences that have poured down upon me in recent days, but this particular passage of Scripture (or pericope as we were taught to call them then) was actually the topic of the very first term paper I ever wrote at the Harvard Divinity School. Can't for the life of me recall what I had to say, but I do recall thinking to myself at the time that now that I had FINALLY written the definitive interpretation...and what a rude awakening it was to receive a "B...."

As it's turned out over the years, the real discovery was Paul Gauguin. But the imagery has stayed with me, along with the lesson: that the best we can hope for is to wrestle God to a stalemate, to see God face to face and live. Still we extort our blessing, by refusing to let go. Yet the struggle leaves us crippled, and limping into the sunrise. Undefeated, but hardly victorious. And of course it has to be the hip. Sciatica. How could I have possibly known at the time just how painful Sciatica can be?

Trial Run for the Big Day

Took another excursion out of the hospital today, this time over to the Meetinghouse with the Occupational Therapist in tow, to practice getting in and out of the building and up and down off of the chancel. At the moment First Parish is only semi-accessible: wheelchair entry is through the alley, and then up a lift in the stairwell to the main floor of the Parish House. The second story of the Parish House (where my office is located) is up yet another flight of stairs (which means I won't be going back in to the office any time soon), but at least we now have an ADA-compliant accessible restroom down on the main floor where it is needed. We've been in conversations with our neighbors on the other side of the alley about sprucing it up a bit as well, and I actually thought that we would have made a little more progress in that direction by now. But apparently not.

Likewise, there are only two low steps from the main floor of the Meetinghouse to the my normal seat on the chancel, which I was easily able to negotiate in the wheelchair with a little help from my friends. And from there it's only another five steps up in to the high pulpit...which actually appeared a lot more intimidating BEFORE I was in the chair than they seem now. Don't expect I'll try climbing them this Sunday. But I imagine I'll be able to climb them by September, one way or another. I'm thinking of it as a Father Mapple sort of thing.

Afterwards, my dad and I made a quick run by my study at the Eastland, just to pick up the mail and so that I could have another look at the place with the Occupational Therapist's recommendations in hand; and then also by my regular apartment to pick up some clean clothes and pay the rent. Saw both my landlord and my downstairs neighbors (with their new puppy!) while I was waiting in the car. It was like a little reunion out on the sidewalk: lovely warm spring evening, the puppy on my lap, a MONTH since I've been home, and yet...yes, it was tempting -- to try, just once, to get up out of the chair, climb the stairs, sleep in my own bed again....

But not tonight. Another day, maybe. Next stop is assisted/independent living, then maybe my study or someone's guestroom, and then maybe, maybe back "home" again. But I'm still dreaming about sleeping on that sailboat too. "Yes, the world's a ship on its passage out, and not a voyage complete; and the pulpit is its prow."

24 Steps

No, it's not just an amalgam of two twelve-step groups.  It's the nine steep steps from the street to the stoop, and another fifteen from the inside front hallway to the landing outside my apartment door.  24 steps from going home.  Not to mention the steps from the first floor of the Parish House to my second floor office, or the steps from the chancel up into the high pulpit in the Meetinghouse.  24 steps I'm going to have to learn how to climb all over again, literally one step at a time.  It's not going to be easy.  But at least it's a simple, straightforward goal.

The last couple of days with the Occupational Therapist have been very much oriented around getting me geared up for going back out into the world again.  Been practicing with a couple of different style walkers, and just was transfered to a newer, more narrow wheelchair that will fit more easily through the door to my study at the Eastland Hotel.  

Lots of Physical Therapy too -- the best of which is something called "E-Stim" (for electrical stimulation) which basically involves me lying on my side with electrodes taped to my tuckus while eating chocolate for 15 minutes.  But they've also got me doing a pretty standard assortment of more traditional exercises to strengthen both my arms and my legs.  

Still working on the pain control regimen as well.  It's always worst first thing in the morning, and of course at the end of a long day.  I often feel as though I'm operating in a very narrow band between pain I can tolerate easily and the ability to hold a coherent thought in my head.  But the nice thing about writing is that at least I can always go back and make sure it makes sense.  Hmmmm... narcotics...

Hosted a very good church meeting here last night -- sort of a "summit" of leaders from various constituencies within the congregation, who I'm hoping will put their heads together to create a more permanent Finance Council, and help guide us through this transition to a new Treasurer and a spring Stewardship Campaign.  When I looked around the table and saw all of the wisdom and experience and expertise gathered there, I felt very optimistic about the future of First Parish  -- both in terms of its potential for numerical growth, and also its ability to serve the larger Portland community in a truly significant and meaningful way.  I know it may sound silly, but the challenge of making all these things happen is one of my biggest inspirations for being restored to health and getting back to work again.  

Those plans are still a little up in the air, but as I understand them now I'm looking at another week or so here in Rehab, followed by discharge to an Assisted/Independent Living Facility back on the Peninsula, where I will stay while starting to receive my chemotherapy.  The chemo is scheduled for approximately 18 weeks, with an assessment in the sixth week at the end of the second cycle.  Depending upon how well that goes, at some point I may be moving into my study at the Eastland, or in to an accessible guest room in the home of one of my parishioners.  My lease on Carleton Street is up at the end of July, at which point I'm going to have to decide whether to stay there or find another place.  In the meantime, I'll use that place to house my out-of-town houseguests, and maybe to practice a little stairclimbing.  God Willing and with little luck, I'll be back in my pulpit in September.