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Written By: Charles - Oct• 05•19

Fall and the Rosh Hashanah Moon

Outside Punta Arenas, Chile, 2011

Nights are chillier. The aspens are golden and the winds have howled for the last few days. Fall has arrived, changing the days, too, shortening them, cooling them down. Kate and I approve.

Yesterday was a quiet day. Kate made doctor’s appointments. I worked out. We napped. Had a family business meeting. Treating these illnesses, though mostly covered by insurance, still racks up some impressive bills. Not out of our ability to pay, but requiring in two instances, two or three months rather than one check. Families with less resources might be sunk.

Aeon, a website with excellent essays on a variety of subjects, had a piece on living with chronic illness: It Take Psychological Flexibility to Thrive With Chronic Illness. This very question has been on my mind quite a bit, how to thrive with Kate’s illnesses and, since March, a couple of my own.

As this article says, it’s easy to get stuck in the round of appointments, procedures, tests, results, daily surveillance. The illness, in addition to its physical effects, occupies psychological space, too.

Some days there is no help for it. Take this week. Monday we saw Tabitha, Dr. Gidday’s P.A. It took a while to get into see her. She ordered a chest x-ray. We went to the imaging center and had to wait for the x-ray to be read and for Tabitha to decide next steps. The next step was a c.t. scan. Requires a referral. We went to lunch, then went back to Tabitha’s office. She got a c.t. ordered, but it was at four p.m. It was one-thirty.

We went home, a 30 mile drive, so we could feed the dogs and nap. At three pm we got back in the car and drove to Littleton again, to a different imaging site. When we got there, the order hadn’t been faxed over so we waited an hour before the scan could be done. We waited some more while they read it. After it was read, the radiologist couldn’t get either Dr. Gidday or Tabitha on the phone because it was well past five.

Back home. It was that same night that Kate’s feeding tube came out. On that day the illnesses dominated.

The next day was the E.R. at Swedish. Another five hours there, then driving back home in rush hour.

During all of this Kate’s shortness of breath made walking any distance difficult, accelerating the fatigue and reinforcing it. Anyhow you get the point. Managing all these events, getting to them, absorbing their information took lots of time, energy. Hard to get that book written or those quilts made.

Part of it, of course, and this is the chronic piece, lies in the now one year plus of these kind of days. A lot of accumulated stress. Fatigue.

These lines from the Aeon article resonated: “Generally, living as rich and meaningful a life as possible when you are struggling with a chronic illness requires a great deal of psychological flexibility. With chronic illness, rigidity in your thinking and behaviour is the greatest barrier to living well with your illness. The only thing you can count on is the fact that you never really know what your day is going to look like, and that things are always changing.”

We’ve been focusing on each day as they come. One day at a time. We’ve worked hard to stay in our relationship, not snipe at each other when things aren’t going well. We’re successful in this, mostly.

This article showed up when I was wondering, how can we live a good life given the realities we face. My catch phrase: live until you die. Paint. Cook. Write. See the grandkids. Stay involved in Joe and SeoAh and Jon’s lives. As we can go to Beth Evergreen, plays, music. Sew. Take care of our own needs: shopping, cooking, bill paying, the house.

An ongoing conversation for us, now informed by this wise essay and our own years of spiritual and psychological preparation. Will keep you up to date.

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