The Conveyor Belt Moves Into the Larger World

The conveyor belt I stepped onto in September, pulling my family with me, started its path in a small and tightly enclosed space. In recent days, it has been moving into the larger world, something I’m ready for only part of the time. While returning to the larger world is the much-desired overall goal, it also can be overwhelming and tiring. Mostly, it raises “what if?” questions that aren’t answerable until the effort is made—and succeeds or doesn’t. Uncertainty is not very fun.

The balance that has been lost and must be regained is more than physical, it’s also personal: can I do this again? And if not, then what? The conveyor belt’s current path may be in a bigger space, affording a wider view with horizons that are farther away, but it still goes over bumps and takes sharp turns that are unexpected, for which we are unprepared. In general, though, its consistent direction is towards real life, regular life. The hard and important things to remember are that the shortages of energy and drive are rooted in the physical issues. This turns out to be way too easy to forget in the moment. It took me many years, before this adventure, to learn to trust my own pacing and sense of timing, and that must be regained: if I do not feel like taking on a task, it is almost certainly a physical energy issue, not my inner shirker at work, as my early programming trained me to conclude. My inner shirker, it turns out, probably either does not exist or is so ineffectual that it is almost never the culprit.

Learning to trust the “go rest” and “slow down” signals and to respect them is the part of this adventure that presents the biggest challenge for me. And that turns out to be yet another way of seeking my inner tortoise, a creature I did not know existed and never particularly wanted to know before this adventure. I’m warming up to the little guy. Very slowly. That seems suitable, somehow.

This part of the recovery would be psychologically easier to work on if it had more overt visible physical symptoms. Those are incontrovertible and do not require much calibration or explanation. The internal healing, though, is not so easy to gauge, so just dealing with it is now called for. On with these tasks.

On the Conveyor Belt

Who gets a brain tumor, anyway? What does it all mean? Being recovered enough to look beyond the immediate circumstances means trying to find a way to incorporate this experience in into our regular lives. This turns out to be a little complicated.

Looking back, it feels like we were walking along our regular path and somehow stepped onto a conveyor belt in early September. That belt goes at a speed and to a destination over which we have no control: our job has been to balance ourselves as well as we can while it speeds up, slows down, takes big turns, and heads to its own destination, whatever that might be. We have stayed reasonably balanced throughout our ride, and have worked to improve its quality. Our counting exercise and this blog have helped us immensely, in that respect. They have allowed us to shape our immediate place on the belt, as if we’d put up our own hand-rails, built some comfy seats and painted our section of the belt in pleasing colors. Any way you look at it, though, we’re on this ride until it’s over, and we do not have much say in when that is, or where the final destination might be.

In talking about where we are, one aspect I’ve been reflecting on is that, once it became clear that there was a tumor that needed to come out, my own focus has been the micro-picture: what is the immediate next step? Michael and I talked originally with the surgeon about his track record and results with this surgery: how many has he done, with what kind of outcomes, including adverse effects, etc? After that, though, once we’d decided on a course of action, that wasn’t a topic I revisited. Was this denial, or something else? Michael, Kearney and Shea, though, talked and worried among themselves, especially about the possibilities for brain damage and stroke. Is it healthy that I simply didn’t focus on something over which I had no control, or was I just in la-la land?

As we proceed along this journey for which there seems to be no itinerary or travel guide, the current locale, as with most places, has both pluses and minuses. Having the energy and health to see more of the world again brings both pleasure and some anxiety about all the things going undone or just left hanging when we started on this conveyor belt. Most of them are still not possible to tackle: the energy is just not there. In some ways, it was easier when there were so many immediate demands on my attention that I just wasn’t aware of them. However, mostly, this is a great opportunity—should I take advantage of it—to be purposeful about how I allocate my time and energy as things move forward. Wish me wisdom and the resolve of the tortoise to stay focused on the long-term goal and to keep moving towards it slowly and methodically. That is the challenge of Part 4 of this adventure.

While thinking about the challenges of the current portion of the journey, we are also even more aware than usual of just how lucky we have been throughout it. So much could have gone wrong that did not and we are so much better off than so many others who land on one of these conveyor belts. We do not want to lose sight of that, nor what we might be able to do for those on worse trips or in worse situations. Nor do we want to forget to celebrate all that is good about where we are and the prospects of the end of the journey. It can feel like a lot to balance, especially if we cannot see the big picture.

A tip for those with healing incisions: we’ve been putting vitamin E, straight out of the capsules poked with a pin, on the incision, as recommended by Richard at my first hair-washing. We think it has helped and this is not something we would have tried without the advice. It’s worth keeping in mind.

Enough of navel-gazing: it’s the week-end, the farmer’s market beckons. May each of you who reads this have a personally-satisfying weekend, whatever that might mean to you. Appreciate someone around you and share your appreciation with that person. Cheers.