Replanting

contending with the return of a lost future

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2015 was eight years ago.

It has been eight years since two family members died slowly while a soon to be symptomatic but as yet undetected cancer circulated through my cerebrospinal fluid, Eight years since I slipped over the edge of the knowable universe.

I drifted in this strange crack between the worlds for eight years. I gave up hope or expectation of living any other way. I found joy, meaning, and even opportunities for generativity in the traumatic yet beautiful wildland of uncertainty.  I embraced it. I made peace with it. I found power in it.

Liminality was my reality and I learned to live focused entirely on the pleasant or painful present, doing what I could now without relying on what would or wouldn’t come next.

But somehow, without any action or intention on my part, without even much hope, I washed up on the far shore, and now find myself negotiating a newly declared stability - terra firma under my feet. I have not set foot on solid ground in a long time, and I am not quite sure what to do with my hard-won sea legs.

The unexpected remission of what I had been told was a chronic and incurable disease has been tentative in more ways than one: Less than fifteen percent of those with cancers similar enough to mine reach remission. Of that fifteen percent, only half of those remain in remission for a year or two.

As I crossed that milestone my regular test results began to yield irregular and ambiguous results. The first time it was too early to worry about. The second time the possibility that this was an early sign of relapse became more consolidated. The third time my doctor said: “Well, this is now the third time, so we need to keep a close watch and let me know immediately if you develop any neurological symptoms.”

Oof.  And a wobbly immune system during a pandemic.

Of course, I needed to befriend uncertainty. It had been a constant companion.  

But at my most recent appointment, a month or so ago by now, my results were surprisingly perfect, disrupting the negative trend. Suddenly other, innocuous explanations for testing anomalies made much more sense to the treatment team than the possibility of resurgence of an illness that had permanently damaged the nerves in my right foot, leg, and hip.

My husband had come with me this time, both of us braced for hard news and instead hit with good news that the precarity of the past eight years was suddenly considered over and done with. The weird tests were now nothing concerning at all, and I was rounding the corner into year three of what was now determined retroactively to have been a secure remission.

The harrowing odds had broken in my favor.

I no longer had to negotiate the scanxiety that I faced at each quarterly follow up. Twice a year would be enough.  My immune system, in terms of the pandemic, was seen as functional enough to be considered “average” in terms of risk.

Everything was okay?

I walked out of the appointment simultaneously relieved and disoriented.

I enjoyed sharing the good news with friends and loved ones who would be thrilled not to have to worry about me so much.

But I really couldn’t process it. What did it change? What did I want it to change? How should this new information reorganize my identity, my lifestyle, my undertakings, my responsibilities, my future?

My future?  What I earth was I supposed to do with a future? How the fuck was I supposed to reattach that limb after it had been amputated the better part of a decade ago? The notion of a solid, expectable, controllable future had been zapped into vapor with a single bolt of lightning that struck in a doctor’s office in New Jersey in November of 2016. Now, in March 2023, a secure enough future seemed to reconstitute itself in a different doctor’s office on the other side of the country.

Was it an illusion? A temptation? A trick or a test? Was I over attached to what ableist people imagine to be “the secondary gains” of disability? Would it be neurotic, anxious, avoidant to refuse to instantly embrace this new reality and proclaim gratitude for it?  Was I required to jump up and down on it, taking its solidity for granted, instead of inching along slowly, carefully, treating the future as if it was as fragile as thin ice, as delicate as eggshells?

What about all the skills, joys, insights, and freedoms I had found after I grieved the future I’d had taken from me? What was I expected to do with them? Was I required to give them back if I no longer had to live as if I was crawling on the edge of a knife? What happens when the tightrope walker reaches the end of the rope, and walking the line feels more familiar than stepping on the ground?

I was frightened for a few days: Did this mean I had to make long-term plans? Should I be taking on projects that would require years or decades to bring to fruition? Was I now responsible to think beyond sharing whatever I already had in my pockets? Was I supposed to start building something, setting aside shorter-term gratifications in favor of bigger pay offs that would come “later” or “someday”?

It felt overwhelming and frankly, kind of horrible. There was no way I could just “go back” to what life looked like before. I stopped talking about it because most people seemed to assume that it should be nothing but relieving to “return to normal” again.

But then I realized (or maybe remembered) that this had all changed me fundamentally, cellularly, irrevocably and that not only was there no risk that I would go back to the way it was before, but my relationship to the future itself would be a wholly new one.

There was nothing I was required to do, or decide, or change or attempt to control. The past eight years had been an initiation into a new way of living, and whatever I carried forward into this new reality would be utterly informed by all that I had passed through. There was no demand that I abandon an emotional economy that was based on sharing whatever resources I had presently available and receiving whatever comfort appeared right in front of me.

It is likely that having some kind of restored future will change things. Maybe I will start to fantasize about growing old and holding grand-babies one day instead of just surviving long enough to see both of my children graduate from high school.

I imagine new projects, desires, goals, and responsibilities may eventually take root in this soil, but if they do, I trust they will emerge naturally, in their own time, and arrive accompanied by some clarity and passion to carry them forward.

If the future is a blank slate, it is one that I used to try to project, construct and impose my will upon, forcing it to fit my desires. I don’t think I will ever attempt such folly again.

Any relationship I forge with the time ahead of me will proceed in a way I could never have imagined before – receptive, accepting, even tender – with open hands and open heart and a willingness to receive whatever flows toward me from an unknowable, unpredictable, uncontrollable future.  

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Today’s Business:

• Accepting applications for a 5 week/10 hour Dream Workshop will be starting at the end of April on Saturdays 10:00 Pacific, 11:00 Mountain, 12:00 Central and 1:00 Eastern

• I am accepting applications for both the Friday mid-day and the Thursday evening Vocation and Discernment Group for Helping Professions who are re-evaluating their relationship to their professional life and models of care and cure.

• I have freed up additional hours in my schedule for individual consultations. Please visit the home page on my website for more information about the individual services that I offer.

• I am organizing a panel for a Community Discussion on Saturday April 29th, at 12 Pacific, 1:00 Mountain, 2:00 Central and 3:00 Eastern, (and available by recording) focused on licensed clinicians who are looking to move beyond individualized models of care toward community-centered work in an era of collective crisis. Check this page at my website in the next few days for more details.