Unmet Commitments and the Erosion of Trust

This morning, Ma'ikwe and I woke up together in the same bed for the first time since Oct 15. That was a long stretch without rain. Naturally (given that we're both process wonks) we spent most of our time between eye opening and our first warm beverage discussing our relationship.

This is a tender topic. Ma'ikwe has been struggling with chronic Lyme the past three years, and the trip we are on now (attending a facilitation training in Ohio) is the first one we've taken together since January (other than to see her doctor). While my extensive travel allows me to make the money that supports the marriage, it means that I'm away from Ma'ikwe when she needs help—both domestic and emotional—thereby straining our bonds.

It's a Catch-22 where my attending to one need is inextricably linked to neglecting others. While navigating this dynamic would be hard enough, it's worse than that. We're also facing additional challenges:

o  As she wrestles with long-term debilitation and near-constant muscle and joint ache, it's damn hard for Ma'ikwe to do meaningful work. This limitation translates into an erosion of her self-esteem, and she has found herself starting to resent that I have choices she doesn't (simply because I'm not sick). 

o  Chronic Lyme (as distinct from acute Lyme, which most often can be treated successfully with serious doses of antibiotics if taken soon after onset) can have a profound impact on personality. While some of these changes may be reversible with the restoration of health, we don't know: a) what portion, if any, of what's going of for her now in terms of a shift in how she feels about our partnership is due to the disease; b) whether those feelings will change even if her health returns; or c) whether she will ever recover her health—20% of chronic Lyme patients don't. That's a lot of ifs.

o  Part of what's hard for Ma'ikwe is that she lives in a house that's not finished being built. It happened that the onset of her Lyme symptoms coincided with the start of work on her home at Dancing Rabbit in 2009. While that project is pretty far along, she doesn't yet have running water and that's a hardship that is irrevocably linked for her with my failure to complete the work on her cistern and water system. At the outset of the project I promised to install the plumbing and wiring and the work is still not finished.

Generalizing from this one constant burr in her saddle, her continuing need to haul water has become the poster child for the way I make promises I don't keep, and the way I prioritize other commitments ahead of the ones I make to her. Essentially, Ma'ikwe is questioning why she should stay in a relationship where her basic needs are so little supported by her partner. Ouch!

To be clear, I don't fail on all my commitments, or even most. Yet it's true that I regularly take on more than I can handle. Overfilling my plate means that things are frequently falling on the floor, and Ma'ikwe is tired of seeing her needs trod upon as a casualty of what she considers a character flaw. While there remain good things about our relationship, right now they are under siege. She's wondering if there's any realistic prospect of our manifesting enough time together to repair the damage. 

To her credit, Ma'ikwe is sharing these heavy thoughts and feelings with me while there remains an opportunity to work through them. But, just as with her struggle with Lyme, there's no guarantee of a happy ending: there's only a chance. It's up to us both to make the most if it.

Back in the Lymelight Again

This past week, Ma'ikwe had a Facebook exchange with someone close to her (whom I'll call Jesse) that didn't go well despite both of them wanting the best for each other. Worse, when Ma'ikwe reached out to me for help (having recognized that the back-and-forth with Jesse had derailed), my response didn't help. Yuck.

While the key dynamic with Ma'ikwe is the cumulative emotional toll that her constant struggle with chronic Lyme has exacted on her psyche, this tender dynamic is worth exploring because it could happen whenever someone is in a depleted state. This sequence is unquestionably not peculiar to Lyme.
I'm going to use this blog to unpack how three intelligent, caring people could miss each other so poignantly. Think of it as a crash site investigation.

The Back Story
o  Jesse lives with her partner on a small rural acreage, where they do homestead farming, work two jobs, and try to keep up with their rambunctious four-year-old daughter. Their lives are full.

o  As Ma'ikwe and I are self-employed, it was easier for us to travel to Jesse's family than the other way around, and over the last four years, Ma'ikwe and I have visited them a handful of times. To date, Jesse and partner have not visited Ma'ikwe at Dancing Rabbit.
o  A straight forward person, Jesse's style is to simply put out what she wants and let others know what she's thinking. While she doesn't expect to always be agreed with, it's her way to speak up when something is on her mind.
o  Ma'ikwe has done a lot of personal growth work over the course of her adult life and she's generally willing to look closely at her part of a dynamic when things don't go well.

o  Ma'ikwe suffered from depression in her early 20s and the personal growth work helped considerably with her recovery. By the time we met, she was a high-functioning, spunky, centered woman who was an accomplished organizer and frustrated with people who flaked on commitments.

o  Jesse and partner lead a more or less traditional nuclear family lifestyle; Ma'ikwe and I don't. Both she and I have been involved with intentional communities for decades, and we have an odd marriage in that we live three miles apart, each in our distinct, though well-connected communities (Sandhill Farm and Dancing Rabbit). Jesse has had no personal experience with group living.

o  Lyme disease (which Ma'ikwe's been battling in its active chronic form for most of the last three years) is progressively enervating and she's struggled to come to grips with her no longer being able to do things, or be anywhere near as productive as she once was.

o  In the last year, Ma'ikwe discovered that her 15-year-old son, Jibran, also has Lyme disease. While there has been a certain amount of camaraderie to their seeing the same doctor and commiserating with one another over symptoms, it's been heartbreaking for a mother to see her son suffer and be cheated out of normal teenage activities.

o  On top of near-constant muscle and joint ache, and a sharply diminished capacity to do things, it is psychologically exhausting not knowing when or if she'll recover (about 20% of chronic Lyme patients never do). While Ma'ikwe has a strong will and is an amazingly upbeat person who rarely complains (which is one of the bedrock reasons I think she's a great partner, by the way), Lyme's constant siege on her being is an exhausting burden, and sometimes it's too much. After a difficult weekend, she was in one of those especially tender and teary places at the start of this week.

Ma'ikwe & Jesse's Facebook Mishap
On Tuesday, Jesse reached out to Ma'ikwe via Facebook, unaware of Ma'ikwe's fragility and low emotional resilience. The conversation started off well enough, with Jesse inquiring how she was doing, knowing Ma'ikwe had better and worse days.

Jesse asked if Ma'ikwe would be open to visit where she could offer a stretch of domestic assistance and Ma'ikwe said she'd love that.

Jesse had noticed (via Facebook reporting) that Ma'ikwe had seemed in better spirits following a long visit from her mother in September when she was able to provide substantial domestic assistance and wondered if Ma'ikwe's health challenges were exacerbated by living in an unfinished home with a partner (me) who was around so little to help.

This is where it got sticky. Ma'ikwe tried to explain that good and bad days were not so much related to how much the dishes were done as they were to the cycle of spirochete blooms, yet Jesse pressed on. Even though Ma'ikwe reported that she benefited from a precious level of emotional and physical support by virtue of living in community, Jesse noted that her health challenges seemed to coincide with her moving into her new house three years ago. Maybe she needed to live a more "normal" life.

Ma'ikwe had a bad reaction to that, believing that Jesse had no feel for what living in community meant. On the other hand, stress is undoubtedly a contributing factor to Lyme becoming active and there's definitely been stress related to building the house—so it wouldn't be right to say that Jesse was completely off base.

Jesse was offering her heartfelt thoughts, connecting the dots as she saw them. Ma'ikwe was upset that she didn't take the time to look for more dots before offering the conclusion shed drawn with them. Ma'ikwe felt misunderstood and Jesse felt punished for reaching out. Train wreck.

While they broke off the exchange before it got ugly, Ma'ikwe could tell right away that it hadn't gone well, and even in her strained state she did a savvy thing—she asked for help. That's when I got in trouble.

Laird's Face Plant
Ma'ikwe recapitulated the Facebook dialog and asked for my perspective. Because the communication was on email, I made a guess as to her emotional state and assumed that she wanted help seeing things differently. (There's a big difference between being in distress, and talking about your having been in distress.) While she really did want my perspective, she first wanted my emotional support—as her partner, as someone who knew she was in a fragile place, and as someone who is a professional who works with people in distress. ("How come you know so well how to offer emotional support to others but not to me?" That hurt.)

Essentially, I violated a cardinal rule of working emotionally: validate the upset person's experience before doing anything else. I misread that she needed that (hey, everyone makes mistakes) but my big goof was not noticing that I was making an assumption and checking it out before proceeding. Doh. 

I was so happy to be able to offer a bridge to Jesse (I didn't find it that hard to see an innocent and caring motivation for all she wrote, even if much of her offering was off the mark) that I leaped to that, bypassing the acknowledgment of my partner's pain. Not one of my finest moments.

So now we had three people feeling shitty. Ugh!

By the time I caught up with Ma'ikwe's email expressing her frustration with my response, I at least didn't compound the problem by writing another email (I may be a slow learner, but that's better than being a no learner). Instead I picked up the phone and apologized.

In spite of all the prickliness of this communication chain, I'm in awe that Ma'ikwe could muster sufficient focus and energy to scrape herself up off the floor, tell me fairly cleanly how my reply to her didn't work, and then send a follow up email to Jesse that did a terrific job of laying out the elements of what's being hard for her right now.

My hope now is that Ma'ikwe and I can convince Jesse to get back on the horse, and stay in touch. While it's no fun going through hard exchanges; it's when we're most susceptible to reactivity that meaningful relationships mean the most.

A Change of Pace

I've just driven to the East Coast where I'll be promoting a new round of facilitation training (in North Carolina starting Sept 27-30), attending FIC Oversight Committee meetings, and participating in the annual Twin Oaks Communities Conference, Aug 30-Sept 3.

En route, I stopped over in Louisville (I've driven straight through from Missouri to Virginia many times over the years, but I no longer have any appetite for marathon driving and I do the trip in two days nowadays) and saw my dear friend Ella Peregrine overnight on Thursday.

For the past four years she's been battling myalgic encephalomyelitis (or ME). This is a refined understanding of what has heretofore more commonly been referred to as Chronic Fatigue Syndrome. The defining symptom of ME is post-exertion neurological exhaustion that is substantially unrelieved by rest, and not triggered by other medical conditions. It is way more than just fatigue.

While I have been following Ella's health for some time simply because she's a friend, I am all the more interested because her journey parallels that of my wife, Ma'ikwe, who has been suffering from persistent low energy for the last six months. To be clear, Ma'ikwe is suffering from chronic Lyme disease and does not have the same diagnosis as Ella, yet their sharply diminished energy budgets are quite similar.

In Ella's case, she can do about two things each week without risking a serious setback—and that's if she's careful not to do too much. For example, she can manage to swim in a pool twice a week if she doesn't add to the strain by driving to the pool. Or she could swim once and go to the library once. If, however, she does the driving, then it's more prudent to only do one of those things a week. If she goes overboard one week, she may have to wait several weeks before she can do any excursions again.

For someone with a vital life force and a strong sense of curiosity—which Ella has in abundance and are the bedrock of our friendship—it is excruciating to have to make such choices and exercise that degree of self-discipline. When I asked her Thursday evening (during the intermission of a lovely outdoor performance of Gilbert & Sullivan's HMS Pinafore at Iroquois Park—Ella chose to visit with me instead of a trip to the library or a swim this week) how many people diagnosed with ME experience a significant recovery of their health, she reported only about five per cent. Yikes!

Though the medical understanding of ME is evolving and those odds may yet change for the better, it is likely that Ella will never again enjoy the freedom and energy that most of us take for granted every day. While not giving up on the possibility of recovery, she is trying to figure out how to paint a colorful life with a sharply diminished palette (rather than lamenting that the tubes on certain pigments have been prematurely squeezed empty). Ella is an amazing soul and I cherish our opportunities to connect and hear about her journey.

Ma'ikwe's prognosis, fortunately, is much less grim, and I'm thankful for that. While there is considerable murkiness about the course of her illness, she bounces back much better with rest and expects to eventually recover from her debilitating battle—even if we don't know the exact route, or how long it will take to get there.

One of the most precious things I got out of discussing with Ella how she experiences her low energy was the importance of trying to meet the ill person where they are—which is notably different than how you remember them or how they were when you were first drawn together. It's about adopting a pace that works for who you're with, rather than expecting them to meet you where you are. It's also about trying to find the intersection of where I am and where they are with respect to how their illness has impacted their cognitive abilities. This insight is especially valuable for me, who typically goes through life with his foot mashed on the gas, and dances lightly from topic to topic. 

I'm often impatient with repetition and am quick to tell where a sentence is headed before it officially arrives at its destination. Thus, I often have a response queued up before the speaker has arrived at a period. When a story or explanation is interlarded with trivial details, I tend toward irritation, longing for conversation that is graced with clean lines and crisp meaning.

When I contemplate some of the struggles that Ma'ikwe has had with me around her sense that I don't hear her accurately, I suspect that part of the dynamic is my impatience—that I haven't made an adequate adjustment to the slower pace dictated by her illness. Rather than blindly expecting her to cope with my stream-of-consciousness check-in style, I could work on slowing down my electron orbits to match hers and seeing if that might lead to better flow between us. 

While that may seem obvious, it hasn't been. I want my time with Ma'ikwe to be comfortable and familiar. I don't really want to be careful; I want to be natural. Yet maybe I can be more caring without being more careful. It's a distinction I'm taking the time to sit with right now (instead of racing headlong onto the next email in my queue).

On Having a Chronically Ill Partner

My wife, Ma'ikwe, has chronic Lyme disease.

She had been suffering from symptoms (including joint ache, stiffness, fatigue, nausea, and occasional vertigo) for about nine months before receiving a definitive blood test in 2010. After treatment with heavy doses of the antibiotic doxycycline in the fall of that year, she enjoyed about 15 months where her health had rebounded to about 80% of normal. Then the symptoms returned around the first of this year.

Unfortunately, the same antibiotic treatment was not nearly as effective this time around, and she's eight months into trying a bewildering combination of protocols in a determined effort to regain her health. [See We Went to the Doctor and the Doctor Said… from March 24, 2012 for more on the disease and how Ma'ikwe has been treating it. See The Lemon and the Lyme from May 9 for how this has been a strain on our relationship.]

Two mornings ago, we lay in bed and Ma'ikwe was in tears, lamenting that she wasn't getting the support from me she needed. 

As her state of depleted energy has persisted, her patience is wearing thin with her slow, up-and-down progress in battling the illness. This journey is made doubly tough by the need to cope (as best we can) with the record-breaking heat assailing the Midwest this summer. Ma'ikwe is worn out, and she has diminished tolerance for:

My Not Listening Well Enough

This has a number of components. First, I sometimes repeat questions that she's already answered. 

Second, I have a tendency to talk over her when we both want to talk at the same time. 

Third, it's relatively common for me to share a past, related challenging experience of my own (if I have one) when she reports something that's currently being hard for her. While I think I'm bridging to her reality, she experiences it as my hijacking the conversation. Instead of continuing to be present for what's going on for her, she feels I'm turning her distress into (another) occasion to talk about me. Not good.

Fourth, our styles of sharing are different. While I like to walk through what's been on my mind since we've last shared, in a stream of consciousness monologue that jumbles together the trivial with the momentous; the humorous with the vexing in an unedited litany, Ma'ikwe prefers to be drawn out and then listened to without interruption. If I ask questions (in an attempt to better understand a thread), she often feels knocked off center and disrespected. In short, Ma'ikwe offers me what she wants in return and then feels cheated when I don't track her stories accurately enough or quietly enough.

While none of these communication issues is peculiar to our marriage, they add to the challenge of our successfully weathering the Lyme siege.

Right now, it mostly needs to be about Ma'ikwe and my challenge is to adapt better to what works best for her. It's not about what's fair or balanced; it's about what's possible and needed to get through a hard time—with each giving in proportion to what they can.

My Not Bringing Things Up

While Ma'ikwe ordinarily appreciates my being willing to talk about what's bothering me, it's hard for me to know when she has sufficient energy to hang in there with me when I'm churning about something in our relationship. How fair is it for me to ask my sick partner to listen to my lamenting about what's hard for me?

While I'm convinced that some of the time I should do this anyway (picking my spots for when her energy seems most able to handle it), it is damn hard to sort out. There are many days when it appears that it's all Ma'ikwe can handle to just hold her own life together, and I am loath to burden her with my concerns as well. Instead, it seems prudent (or at least humane) to just put such concerns on hold and wait until her constitution has been restored to something far more robust before bringing up relationship issues.

Unfortunately, this leads to her bringing up hard stuff far more than I, and that, understandably, pisses her off as well.

My Touching Her in Irritating Ways

While cuddling and touch have been an important part of the vocabulary of our intimacy throughout the seven years we've been together, it's much trickier these days. Ma'ikwe suffers from fibromyalgia-like symptoms and even light touch can be painful. Usually my touching her back is pleasurable for her, but not always. Now, sadly, something that we used to look forward to very much has become uncertain, and we touch much less.

• • •

Hardest of all, we don't know how long we'll have to hang in there before things will get significantly better. We don't know if Ma'ikwe will ever fully recover or if it will again be OK for me to touch her casually and we'll both enjoy it. I have a much deeper respect these days for that portion of traditional marriage vows that goes "… for better and worse."