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).