Caring bridge site is up

Hello everyone,

This is Jo here (Laird's daughter) Laird is focusing on recovery right now and is, as I'm sure you have noticed, not writing blogs. Susan and Laird are trying to maintain updates on his caring bridge site. The address is caringbridge.org. You will have to sign in to see his posts. Then just search Laird Schaub. Thank you to everyone who asked for this link, we apologize for the delay, we had to figure out how to get into this account.

Best wishes,

Jo

Cancer Update: Treatment Continues

I. I'm slowly working my way up the table of periodic updates: from horizontal to right angle—though there are apparently some among my readership for whom that subject can never be insuffiienctly compelling nor can the content ever "too right" to be labeled as inappropriate as blog material. Just bring it on, and let the blue pencils fly. Sheesh. I'm no convinced this is a good way to run a railroad.

I face a stiff challenge first thing evey day when the PT folks push me to give them "true weight" right out of the box. This request invariably puts me my off my feed (do they believe I've heretofore been conspiring to obsfuscate?) It just wrong foots the whole day.

II. While I'm at it, I've also noticed some subtle changes to the frequency and duration of my walker perambulations. Though I have no idea why that constitutes compelling information, I nonetheless have it. Surely Therapists want consistent information about weights and it makes sense that they're more likely to get if it's requested at the same time daily.
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That said, I chafe because they are willing to let the high standards (just barely possible in the controlled hospital environment) be the enemy of the good that's routinely possible but mostly wasted. Sigh.

III. Finally, there are some oddments about difference ways that readers prefer receiving information updates, which includes a marked perference away from cognition and toward gestalt. Is that worth noting? Apparently it is, as here I am already doing it, as well as preferences about how how that info is conveyed. 

While everyone wants blood be be drawn only as needed, and wants samples to be fresh, the patient wants the total number of draws to be minimal where the doctor what wants to emphasize freshness and blood that's least likely to coagulate.

Nursing staff wants to emphasize frequencing of testing for vitals (blood pressure, heart rate and blood temperature) to avoid surprises. Patients want to reduce routine testing in the service the same goals. It gets confusing. And when the music stops, everyone is supposed to get their butt in a chair or go home. Can you see why this is nerve-wracking?

Cancer Update: the Treatment Begins

Yesterday, my oncologist (Dr Alkaeid) decided on a definitive diagnosis: I have multiple myeloma, as original suspected. 

There was a delay in reaching that decision because I have it in an unusual form which makes tracking it somewhat more challenging, and it is somewhat more aggressive than its more common forms, but this bad news is counterbalanced by the cancer being pretty well understood and that it is in a family of cancers in which tremendous strides have made in treating it in recent years (when Susan told our oncologist that her father had died of multiple myeloma in the 1980s, the doctor said the 1980s was like the Stone Age in comparing treatment then with treatment now).

That said, there are complications. The number one priority is saving my kidneys (to avoid dialysis or a kidney transplant). As I reported Monday, their functionality was down to only 20% when I arrived in the hospital Sunday. They were being strained on three fronts: a) processing all the excess calcium in my blood as a byproduct of the bone leaching characteristic of myeloma; b) processing all the useless plasma cells that were being produced by the myeloma; and c) chafing at all the ibuprofen/naproxen I'd been taking to ease my back pain. My kidneys were just plain wore out and close to renal failure.

In treating the cancer, the first step is to kill off as many of the cancer cells as possible through chemo-therapy, but the docs have to be careful the this doesn't lead to a toxic dump that swamps the kidneys. 

After several days of trying to flush the kidneys of the excess calcium and abnormal plasma cell detritus (to enhance their functionality) last night I started a course of steroids and chemical warfare targeted to knock out the cancer cells at a rate that my kidneys could keep up with.

This will be done in courses of chemotherapy, each one taking two weeks. After a course is completed it is evaluated before another is started to see how to adjust the medication for the next course, or whether to stop that protocol. 

Assuming I get through that OK, the next target is to strengthen my bones through re-calcification. Again, care must be taken that the kidneys are robust enough tolerate the treatment. Meanwhile, my bones are thin and at least somewhat more susceptible to breaking than in a healthy person. I have to not just be careful about lifting; I have to be careful about sudden torquing or unusual weight loading of arms and legs.

On the brighter side there is reason to hope (though no assurances) that I can recover a significant amount of renal function if we take away the stressors. That is, the kidneys have some capacity to regenerate and it behooves me to make the most of that possibility, through careful lifestyle choices. This can include diet, travel, and workload but I don't yet know the dimensions of what will be asked.

As if this weren't enough, I still have the presenting back pain that got me to the hospital in the first place. While it's probable that it's related to the myeloma (for example, the calcium loss has led to partial collapse of three vertebrae—T 11, T 12, and L1—if you're keeping score at home), we're not sure of the mechanism yet or even the best way to treat it. 

That said, the doctors are agreed that it's a bad thing for me to stay supine and I need to be moving more and upright as much as possible. Toward that end, I'm taking oxycodone for pain relief and working with a physical therapist to get me out of bed every day and walking—I'm not doing anything quickly, but at least I'm starting to do some of it vertically.

Today, for the first time in a month, I did a 100-foot sojourn (around the nurses desk before heading back to bed with the aid of a walker), and sat up to take my dinner for the time since December. Small but important steps to life-after-hospital.

The news that landed best all day was a story this morning from one of the staff oncologists (Dr Perlov) who said that he treated a man just last December who presented with another version of multiple myeloma with the same degree of complications as mine and he's well on his way to full remission and excellent prospects for about 15 years of healthy life ahead. 

It sounded damn good to me.

Time to Slow Down

For the last four decades I've devoted myself to the creation, exploration, and promotion of community living. Over that time, whenever I talked about the "C" word, I've been invariably referring to community. As of yesterday, however, the "C" word immediately in front of me is cancer.

As readers of this blog will know, I've been battling chronic back pain for 16 months, and acute lower back pain since mid-December. As I have been through previous episodes of this since its first occurrence in October 2014, I've been treating it similarly and expecting it to settle down with the help of prescription medicine and bed rest.

But after 6+ weeks of yo-yoing back and forth between almost functional and can-hardly-get-out-of-bed-to-pee, I finally faced the fact that I needed help beyond what my own body could provide, and went to the ER at St Luke's Hospital in downtown Duluth yesterday afternoon. It turned out to be a good thing that I did.

As soon as we got past the admittance dance (how do you spell that last name again?) and I could lie down in a bed (the pain all but disappears when I'm prone but is excruciating when sitting or standing), things started picking up steam. The ER doc, Scott Wolf, quickly had me relate my history and ordered blood work. My blood pressure was 98/56, which is abnormally low for me, and testing revealed that I was down about a quart. Not good. Further, there was gobs of calcium in the blood and everyone agreed it was time to admit me to the hospital. 

Before I had a room assigned I was whisked off to x-ray and the doc who read the film (Nick) noticed that my bones were thinning and showed the characteristic pattern of calcium leaching—hence the elevated levels floating around in my blood. The preliminary diagnosis is multiple myeloma, a form of cancer in which the body produces abnormal plasma cells. Not only does these cells reduce the number of useful red cells, white cells, and platelets (that help with clotting), they also weaken the bones.

The diagnosis was preliminary and there is much testing to follow—even if the cancer diagnosis is confirmed, it comes in different presentations and the doctors need to know how far long it is before prescribing treatment.

Pin cushion Monday
Today, my first full day in the hospital, they've been drawing more blood, giving me all manner of supplements, queuing up some more x-rays, a CT scan, and who knows what all as the they circle around a diagnosis. With all the adhesive, gauze, and tubes, it looks like I'm trying out for the walking wounded drum and fife corps.

They're also flooding my body with intravenous liquids (two units of blood and all the saline solution they can pump into me) as the standard treatment for pepping up my kidneys. 

In exchange I get cable TV and anything I want to eat between the hours of 7 am and 7 pm.

I'm starting to get the picture that I'm facing a serous health threat. While I don't yet know the full dimensions of it, I've been gradually digging myself a hole for quite a while now and it's time to start working my way out of it.

Mixed feelings
I'm experiencing a perplexing range of emotions:

o  Foremost, it's likely that I have cancer. While the docs have been upbeat, cancer kills and at this point I don't know how close to the edge I am. That's scary.

o  Paradoxically, it's also a relief to finally be getting solid diagnostics abut what's causing my recurring pain, and what I can do to fix it.

o  Over the past month I've been going through a roller coaster of feelings as I attempt to puzzle out why I'm in such pain and the right way to think abut getting through it. It's been bewildering and exhausting. Do I push through the pain or listen to my body?

Right now I feel overwhelmed, and at the same time well taken care of. In a day or two the fog will lift and I should be able to get my first glimpses of the road ahead.

Community Living Boot Camp

I had a conversation this week with a guy on the West Coast who is interested in putting together a loan program for first-time homeowners who want to live as a group. He thinks he can get mortgage rates at least as good as those available to nuclear families, and it can be set up in a way that if anyone leaves or joins the group before the mortgage is paid off, that refinancing can be avoided. 

In general, intentional communities solve this be forming a separate legal entity (probably a limited liability corporation) in whose name the property is held. That way, changes in the group composition can be handled as an internal matter and don't affect the mortgage. The downside of this is that LLCs will typically be viewed as a commercial loan and will therefore encounter higher interest rates. 

Under this new concept, small groups (say, 10 and under) may be able to get much better interest rates, which is especially attractive in urban areas where the housing market is heating back up to pre-2008 levels.

Assuming all this is doable on the financial end, the creator of this program is (rightfully) concerned with making loans to groups that are likely to succeed, which is where FIC and I come into play. His idea is to require that groups applying for loans under this program attend a condensed training in group living, and come through with a "passing grade," whatever that is.

He realizes that this is not his area of expertise and he wondered if FIC would be interested in developing the curriculum, overseeing the teaching, and making the assessments. He guessed that the training might be accomplished in 1-2 days and FIC could earn fees for running them.

When I responded that I thought it might take closer to 5-7 days to provide a decent overview of what it takes to create a successful group, he was shocked. (How could it be that hard—did I mention already that he's fairly new to the complex world of intentional community living?) Because the financial program is so promising, we are both willing to look another level deeper, to see if there's a way to thread the needle. I gave him leads for starting community workshops in the US, from which he'll gather curricula ideas. Simultaneously I agreed to draft an outline of what I think needs to be covered, and we'll see how creative we can get in delivering it economically.

So here's my first pass at the curriculum, in no particular order:

Cultural Context
o  How Cooperative Culture Differs from Mainstream Culture
o  Common values 
o  What interest do you have in modeling for others what you've created?
o  What qualities do you want in those filling leadership roles?
o  Navigating the transition from start-up to established

Process Agreements
o  Decision-making & governance
o  How will you handle conflict?
o  Record of agreements
o  Will you keep minutes of meetings?
o  Will meetings be facilitated?
o  How to handle non-compliance
o  When to get help 
o  Under what circumstances might a member suffer an involuntary loss of rights & by what process will that be examined?

Social Skills
o  How well can you articulate clearly what you think?
o  How well can you articulate clearly what you feel?
o  How accurately do you hear what others say (and are able to communicate that to the speaker such that they feel heard)?
o  How well can you hear critical feedback without walling up or getting defensive?
o  Can you function reasonably well in the presence of non-trivial distress in others?   
o  How well can you shift perspectives to see an issue through another person's lens?  
o  How well can you see potential bridges between two people who are at odds with each other?  
o  Can you see the good intent underneath strident statements?  
o  Can you distinguish clearly between a person's behavior being out of line and that person being "bad"? o  Can you own your own stuff?  
o  Can you reach out to others before you have been reached out to yourself?  
o  Are you sensitive to the ways in which you are privileged?
 
Membership Agreements
o  Member intake process (including Fair Housing Laws)
o  Member exit process
o  Rights and responsibilities 
o  Can sweat equity substitute for dollars? If so, with what limits?
o  Subletting and guests

Defining Level of Engagement
o  How much do you intend living together to mean intertwined lives?
o  Common meals
o  Joint childcare 
o  Limit setting by adults who are not the child's parents
o  Getting the work done
o  The boundaries between public and private
o  What expenses will be shared?
o  What things will be jointly owned? 
o  Acceptable noise levels in common areas
o  Cleanliness standards in common areas
o  Dietary flexibility
o  Pets

Obviously some of these topics won't apply in all cases (for example, when there are no children or pets), but the vast majority are in play. What's more, these are only the headlines. There are subtopics underneath them all and choices to explain. It's hard to imagine covering all of the above in less than five days—especially if we're also to assess how far along the group is in grokking each aspect.

It will be interesting to see where this will lead—whether we're able to cover all (or enough) of the basics to make an appreciable difference in screening out the starry-eyed and the ill-prepared, without making it prohibitively expensive.

The Passage into Elderhood

I recently received an interesting invitation, asking if I would write about elderhood, and what it means to make a purposeful transition into that stage of life:

Elderhood is certainly one of the least celebrated and recognized transitions in our culture. I am also struck that when we moved to community last year, my partner was the oldest one there. I felt the lack of elders holding the powerful space, witness, and wisdom.

In many ways, I know that we are re-forging the proper fires of initiation and becoming. I know that those fires were mostly out for my parents and grandparents, though rite of passage happens anyway (just not as consciously, powerfully, or prayerfully).
 
I am reaching out as younger here, hoping that when I reach this threshold, I'll know a little bit more about it. There will be a little more collective wisdom in the fire. 
 
I consider you a being who is expressing and embodying your elderhood with beauty and wisdom. I look up and out to you as someone who has passed this particular milestone of 50. I have no idea how that journey was for you, what arose, what changed, if it was a big deal or just another day. 

My invitation, as someone who loves this man dearly, and sees how powerfully he lives in this world, is that you take time in the next month or so and write him a letter. Preferably the old school kind, written on paper, and sent via US Postal Service. I realize that you may not know my partner deeply, but I do know you hold some wisdom as a visionary and that he would appreciate hearing from you on this cusp.

How was it for you to come into your 50s; what wisdom have you harvested that feels worth sharing; what felt challenging or vulnerable; how you have created or found elderhood as a path…

What a lovely gift! Here are some of my reflections on the transition into elderhood:

o  Dearth of ritual
Our culture is ritual starved. While some of that has been preserved in church, or in moments of silence before meals, our lives are profoundly lacking in celebration of mysteries and rites of passage. As you reach the half century mark, I encourage you yo take some time in retreat to reflect on who you are and who you want to be. If you want to share what emerges (a conclusion, an intent, a hope) do so after the retreat in a setting and circle of your choosing. Make any ritual of sharing be your ritual.

o  No magic line to cross
While I think this can vary considerably by individual, I did not "ratchet" into elderhood. (You hit 50 and bingo—you're an elder—like watching all the numbers rolling over on an odometer.) I eased into it, just as I did other major points in my life. When do I know enough to ask people to pay for my services? When am I good enough to teach what I know? When do I have enough to say (and enough facility as a writer) to embrace the identity of author? When is it time to step down and give others a chance behind the wheel? Is my style of leadership helping those around me become better leaders? In my case I only knew I had crossed a boundary looking backward—it was not at all clear at the time—even if the question was imminent for me.

o  It's a state of mind
I think identities (such as elder, mentor, teacher, facilitator) work best when they come from within; as something you own, rather than a label thrust upon you. Not everyone will recognize your identity, or relate to you in that way, so your ownership needs to be resilient in those occasions of non-recognition (or even rejection) by others. Think of it as a deep well that you are able to drink from at need. 

o  It takes patience 
Elderhood requires ego management; not being in a hurry to help. It is an art form reading whether an invitation exists for you to offer your reflections. You are certain to have more germane thoughts than invitations to share them. Think of it as an opportunity: more time to read, visit, write, digest, and dream.

o  Don't wait for the phone to ring
Don't succumb to the temptation to tie your happiness to having your opinion sought, or your advice followed. Your job is to see that the trough is filled with water, but you can't make the horses drink. As an elder you want to be ready, but not needy. Like Cassandra, there will be times when your foresight will be prescient, yet your experience will be discounted, or even ignored. Keep breathing.

o  Turning over your work to others
One of the challenges you'll face—not yet, but it's coming—is finding one or more suitable successors to continue your work when it's time to hang 'em up. In fact, it's one of the ways that you'll ultimately be measured as a leader is whether you fostered the development of leadership capacity in those around you, or did you inhibit it?

o  Downshifting
As you enter elderhood there will start to be a diminishment of capacity. You will inevitably encounter limits on time and energy. This means greater attention needs to be given to where you invest. What are the leverage points? Where can your experience and wisdom make the most difference? Where do you derive the greatest enjoyment? Where is the door open? Think strategically (not about how to pad your résumé for your obituary). As an elder it's likely that many of your contributions will be behind the scenes and not openly acknowledged. Are you OK with that?

o  Know what you don't know
Operate within yourself, knowing what you know as well as what you don't. This is not about no longer plowing new ground or taking chances; it's about not misrepresenting your gifts. The more wisdom you possess, the harder it will be for others to discern the limits of your knowledge, and you need to be vigilant against overplaying your hand—all the more because you may not be dealt in as often as you'd like.

o  Low Threshold of delight
As a final thought, I encourage you to cultivate the capacity to be easily amused. Be an elder with an expanding, ever-curious spirit—not one whose soul shrivels as their physical stamina spirals down. Enjoy this life all the way through. There's no guarantee of a replay.

FIC's Budget and Goals

Today I'll respond to a comment inspired by my blog of last week, Sprinting to the Finish Line.

The reader wrote:
What's the long range planning/goal setting process at FIC? It sounds like you've had a successful fundraiser, and you've just scrambled to figure out what you could do with the money. Seems a bit backward, frankly.

Also, is there any plan for FIC to develop an ongoing, sustainable funding source, or does it intend to continue with ad hoc fundraisers? And are FIC's budget and finances disclosed anywhere for the public to see?

I can see I didn't do a very good job of laying out the situation. Let me tackle these questions and comments one at a time.

FIC's 2015 Budget
Let's begin by painting the big picture. Here's the Fellowship's budget for last year.

Income
Communities magazine                  58,500
Website                                           27,250
Events                                                      0
Community Bookstore                    30,450
Development                                  28,000
Office & Overhead                           1,000

Subtotal                                        145,200

Expenses
Communities magazine                  51,389
Website                                           14,400
Events                                                      0
Community Bookstore                    18,660
Development                                   10,000
Office & Overhead                          49,079

Subtotal                                        143,528 

Net profit                                            1,672

Notes
o  FIC hosts events periodically, but not necessarily annually. While we participated in and supported a record eight community-focused events last year, we produced none of our own. Hence no money was spent in that category, nor was there any income. Others years will be different.

o  The Kickstarter campaign (which was the springboard for my blog, Sprinting to the Finish Line) was specifically targeted to help with Communities Directory—the print version is a line item under Community Bookstore, and the online version falls under Website. 

When we last printed the Directory in 2010, it appeared that there weren't enough sales of the book to justify printing it. That is, if we printed enough copies to get a reasonable price per copy, we'd be tying up the capital for too long. However, in recent years print-on-demand technology has improved to the point where that's now a viable option, and the viability of the project looks quite different when we only need to front the money to cover production labor.

o  While all of our programs make money when you look solely at direct expenses, we incur considerable indirect costs running a national nonprofit, including:
Executive Director salary
Accountant salary
Business Manager salary
Missouri office staff
Virginia office staff
Office utilities
Office supplies
Office rent
Board travel subsidies

Gross profits in the program areas need to be sufficient to cover Office & Overhead.

FIC's Development Strategy
One of the six main budget areas outlined above is Development, which includes membership, fiscal sponsorships, fundraising, and relationship building with people who like the cut of FIC's jib. 

It's worth noting that FIC did no fundraising its first 10 years, as we tried to make ends meet by just relying on user fees and people working as volunteers. Since 1997, however, we've changed our business model to purposefully include fundraising.

In general our Development strategy is to find a solid match between what we want to do and what a donor wants to see happen. We pair the donor's resources (money and connections) with our ideas and implementation know-how. It's a partnership. Though every conversation does not end in a good fit, we do pretty well.

We raise funds for our activities in a variety of ways: user fees, volunteer labor, earmarked donations, and general revenues (if there is a surplus in one area we may use it to cover a shortfall in another).
Because a) our policy is not to undertake a project unless we have the money in hand to do it well—or a clear pathway to it, and b) we have no shortage of ideas of good things to do (see long-range goals below), we are frequently in the position of trying to be creative about ways to increase revenues. On occasion we do so by running a crowdfunding campaign. (The one we just concluded in support of a new print version of Communities Directory is only the second one we've ever done.)

With crowdfunding you want to be as specific as possible about how the money will be used. That said, toward the end of the Directory campaign we had a special opportunity. We had already reached our funding targets and wanted to take advantage of the final days to see what would happen if we widened the pitch to support some of our additional funding goals. This was not done because we were confused about our needs or unsure how to use the money from the campaign. It was our being flexible about how to direct the money once the primary target had been achieved.

FIC's Long-range Goals I revealed a number of specific goals in Sprinting to the Finish Line:

o  Covering travel for our Executive Director to Mexico to make a public presentation to Alberto Ruz, winner of the 2016 Kozeny Communitarian Award.

o  Increasing travel subsidies for Board members to attend our semi-annual face-to-face meetings.

o  Seed money for future events.

o  Paying down debt on our new green office, that we moved into last spring. 

o  Helping to gather enough funds to hire a new Development Director.

Here are five more wide-sweeping ones as well:

—Hosting a summit among sister organizations that hold a core commitment to promoting community and cooperative culture—to explore developing greater cooperation among entities promoting cooperation (radical, eh?).

—Figuring out how to create and sustain a viable coalition of networks to form the newly christened Global Ecovillage Network of North America.
—Partnering with entities such as Transition US, worker collectives, and university sustainability programs to make common cause when it comes to pioneering sustainable practices.

—Puzzling out how to host events that are affordable to a wide range of our constituency, while at the same time providing enough income to decently compensate the core event staff.

—Doubling the paid subscriber base of Communities magazine to 2500.

While the Board talks about strategic goals and makes adjustments at every Board meeting, we conduct a major overhaul about once decade, which we are in the midst of right now.