Month: March 2021

While I was visiting my Croatian cousins in 1975, a neighbor who objected to the weekenders from Zagreb driving past his dining room twice a week as they came and went to their cottage, hung a gate off his house to stem this rush of one-car traffic that was ruining his illusion of solitude. The town went nuts. “He’s blocking a path,” my cousins explained, “paths are what connect us, what hold us together. Only crazy people block paths!” By the time I left a week later, the gate was down and the couple from Zagreb were once again free to use their driveway on Friday evening and early Monday morning. Sanity had prevailed.

Paths are what connect us. Paths can also represent habit, good or bad. A new path can be the difference between health and illness.

When, a couple of years ago, I finally sat down to begin work on the play, Colloquia, I was not at all sure I was up to the task of completing it; but over the next year I did, and at least I and a few friends thought it rather good. It eventually took on a life of its own and helped to celebrate the anniversary of an important event in Orvieto’s history, one made possible by two men who discovered paths that connected them.

When I sat down to write my first blogpost in November 2015, I had no idea of where it would lead me, or if I could follow. This one will be number 207 (and that is a surprise, even now). The journey has taken me down paths previously unexplored, and caused me to forge new ones.

When I first encountered the literature of the Parkinson’s Recovery Project, that it expected me to become aware of subtle channels – pathways of electrical and luminescent energy as described by Asian medicine – seemed an impossible challenge to meet. A few weeks later, and I am spontaneously and vividly aware of those channels at least a dozen times a day, and often for minutes at a time.

What we imagine as being beyond our grasps can, with a little persistence, become a path. Stop now, and recall a few examples of this same phenomenon in your life. It happens to everyone.

Just for our amusement, behold a roadmap.

My posture is still hunched, but it no longer feels pressed into that position; less of a stoop and more of a droop.

My gait is still unsteady and random, but there is a security in the legs that has been absent until this week.

There is often tension in the thigh muscles, but it goes away for hours at a time, now, where as before (like last week) it was a feature of my so-called physique.

The right arm, for four years the home of an internal or external tremor and annoying heaviness, has been mostly quiet for days (even in tremor’s favorite, secret positions), and today the weight has lifted. Sometimes the arm even swings when I walk.

I’ve been going to Michele (or he has been coming to me) for shiatsu on a regular schedule for almost two years now – barring lockdowns – and irregularly for two years before that. After last Wednesday’s very undramatic session he remarked that he had never in all that time found my body so relaxed. I felt it, too.

And all this is framed within a reminder from Janice (at the Project) that it is ten weeks after ceasing medication before withdrawals end; for me that’s mid-May, another reason to look forward to the glories of spring. A spring, I hope, that will include a walk or several on a woodsy trail.

Still, when I’m asked how I feel, I fear saying “better” with too much confidence. I suppose I do the same when someone asks how a writing project is coming. Insurance is a human concept. It is also a way of hanging a gate across a path.

I did find a rather startling internal gate this week; not something I’d been totally unaware of, but the habit fell under a strong spot light. Whenever I recall a particular embarrassment, something I did that was stupid or insensitive, or a moment of arrogance or selfishness, something collapses and I say to myself “I wish I could die and get it over with”. Not exactly an affirmation, and a nasty way of returning to a state of numbness in lieu of celebrating my imperfect humanity – and my survival as a living being. It is of value, I suppose, to recognize the idiotic things I’ve done or said, but there is no reason to punish myself over them on a daily basis. And with every choice to forgive, a surge of electrical energy surges up my spine and into my head. Learning to be kind and loving to myself is an integral part of healing. Those paths must be maintained and routinely cleared to allow for movement.

And so I creep forward. It’s not easy opening myself to patterns and concepts foreign to my western mentality, but it is always worth the effort. And as a friend recently pointed out, I’m doing this for my own health – my own recovery from a condition that conventional thought routinely describes as incurable – but each effort I make is also an effort on behalf of a community of people with like symptoms. 

My father is long gone from this world, and although I cannot do his work for him, my efforts benefit him as well – to heal his Parkinson’s in memory. My cousin Shirley passed into a reality beyond Parkinson’s the day before I discovered a similar reality in the form of the Recovery Project on this side of the gate. Their company has encouraged me to move forward on a remarkable journey towards an option that was not offered them. And as I begin to know what to look for, I see that the way is well-marked and moving on its twisted course can become a source of joy and wonder. 

If, as my cousins told me, paths are what connect us, then movement along them is the essence of life.

I think it was February, I know it was 1970. I was crossing East Broadway in Tucson, at a corner but one not marked for pedestrians. I didn’t see the lady from Tombstone in the gray Nash Rambler, and she didn’t see me. The car clipped my right hip, sandwiching my right hand between metal and flesh. I spun, and fell into the two lanes of opposing traffic.

I obviously survived, but in those moments on my back as I watched oncoming vehicles trying to come to a stop, I wasn’t at all sure I would.

Wednesday is my usual day for shiatsu massage. Michele comes to the house now. The route to his studio is not long, but it involves stairs and hills, and I’m not yet ready for those. So, he brings his pads and sets up on the rug in the living room. The sessions have been my favorite hour of the week for several months. Wednesday before last (that would be February 24) the session turned odd half way through. The first part I was laying face down, and as always, it was paradise. Then I turned over onto my back. Within a few minutes, the muscles in both legs began to clench, and that was followed by trembling in both arms. To be fair to that particular day, similar things had happened before at the halfway mark, but Michele was able to quiet my body, and the second half would end as happily as the first. But on Wednesday before last, it took him longer and I came out of the session feeling a bit torn up.

This last Wednesday followed the same pattern, only Michele was able to do nothing to quiet the movement which only continued to grow in severity and discomfort. Neither was I able to control it, and all attempts only made it worse.

“This is not the Parkinson’s you’ve been diagnosed with,” Michele told me. I agreed, something else was going on. “There’s stuff inside that needs to be released.”

“The first part was heaven, and this, on my back, is like the other place!” I managed to croak between violent trembling.

“You’re more vulnerable on your back. No one wants to live in hell. Let go of it.”

So, I did.

Now the accident in Tucson had been playing in my mind for a week or ten days at that point. The central tenet of the protocol I’m now following (The Parkinson’s Recovery Project – www.pdRecovery.org) is that the body gets stuck on what is called Pause Mode, that point of high threat to existence when all awarenesses are shut down save those that are essential for continued survival. In some people, Pause is never turned off. There are chemical compensations that the body makes to afford its functioning, and at some articulative point in life – the kids all graduate from college, the house is paid off, one has retired – the reduced pressure to function undermines that effort of compensation, and Parkinsonian symptoms begin to appear. This is a short-handed version of a much more nuanced and varied process, so suffice to say that I have been entertaining the idea that the accident of 1970 is what threw me into Pause. Symptoms began to show shortly after I retired.

But playing through in the back of my mind was not what was happening on Wednesday. When I took Michele’s guidance and let go, I began in many ways to re-experience the accident, and writhed and screamed and groaned as I did that day in 1970. And shook, and felt myself seconds away from death.

The usual one hour session took two hours to complete. I had scheduled a phone call for an hour after shiatsu was supposed to be over. The call came as Michele was leaving.

The call involved a meditation session. During that, I relived the accident numerous times again. The first time, I realized that I had been seeing the entire ordeal from a vantage point outside and to the left of my body. With each repetition, the experience became more detailed and more embodied. By the end of meditation, I had replayed the accident several times from an associated perspective, each time more clearly.

I was hit as I described above, spun, landed on the pavement on my left hand, knee, and forehead, then flipped onto my back. As I struggled to rise, I saw the oncoming vehicles, turned onto my left side and dragged myself to the shoulder of the highway, where I again fell onto my back. It all took about fifteen seconds.

As he was packing the pads and readying himself to go, Michele noted that we had been talking for several minutes without my having put my hearing aides back, and I’d had no difficulty understanding. When I put the left one back, everything was way too loud. A month after the accident, my hearing disappeared one night at a performance of a graduate thesis project. I went to a doctor who gave me niacin infusions, and it was seventy percent restored – and there it stayed.

Michele also told me during that conversation that I should probably expect a few days of stronger Parkinson’s symptoms, and according to several similar experiences recorded in Recovering from Parkinson’s, they may be followed by those same symptoms going away entirely over subsequent weeks or months. So far, such has been the case for the first part of the expectation. Here’s hoping that the second part will also be borne out in time; as of Sunday night, there seem to be good beginnings.

One of the things that has gotten me through the days of strong symptoms since Wednesday night has been watching The Queen’s Gambit. One of the overriding themes that story touches on is the advantages of having a team. I am blest with health practitioners who, although many of them have no direct connections with one another, are working together to help me recover from what is almost automatically described as incurable. I am also blest with a global circle of friends who are willing to listen to – or read – my periodic rants as I grapple with re-wiring the mental and emotional habits that have brought me to his juncture. 

I hope someone is working on the stirring music for the teary-eyed finale. That’s my favorite part.

I’ve been struggling to find a way of chronicling what is going on as a result of my engagement with the Parkinson’s Recovery Project. I don’t want to write about the hypothesis and techniques involved, Janice Hadlock, the Project’s founder and principal practitioner, does that far better than I could ever hope to do. But without covering that ground, it’s difficult to talk about my experiences at all. So, I’m just going to write about my day, and perhaps an accumulation of days will express a process of recovery and healing.

Recovery and healing rarely travel in straight lines, no matter what the situation, and a record of my days (not all of them, but perhaps Sundays) won’t necessarily look like a healing to the observer, but rest assured, something positive is unfolding, and hopefully in a month or two that will become more apparent.

First of all, my left foot is still in pain from the surgery on the Achilli’s tendon of last summer. The pain is not in the tendon, which is, I am told, a good thing, it’s to the inside of the ankle and prevents me from walking. I’d been able to take four walks this week, the almost flat and partially macadamized route to the cliff at San Giovenale. But the foot doesn’t respond well to daily use. So, when I am crazy for a stroll, I have to content myself with pacing the apartment. That has also become the only way I can get to sleep at night; pace for twenty minutes and I’m down as my head hits the pillow, neglect it and my body waits until I get up and do it. And that was the case last night. I was tired, I went to bed, dozed for like four minutes then lay there with no interest at all in sleep until I got back up and walked the walk. It was a lousy walk, the left foot hurt with every step and I was wobbly as hell, but it did the trick.

This morning my early task was to write my friend Giuseppina whose husband Franco is a retired acupuncturist. At the first Italian language performance of Colloquia in June 2019, the audience hung out after curtain call not content that the evening had concluded. So, first Giuseppina, then Franco, stood and made extemporaneous speeches about the power of theatre in building communities. I could not have been more astonished. So yesterday when acupuncture came up in conversation with my American friend Candace, and as I watched myself reject the possibility that Franco would agree to give me treatments, I finally connected my need with their post-show speeches, and understood that I was just being shy. I messaged Giuseppina on Facebook. She wrote back immediately and Franco will make a house call tomorrow afternoon. Acupuncture has been remarkably effective in relieving pain before, so my hopes run high.

A few more tasks like that brought me to lunch. I’m sick of my own cooking. I want to walk, yes, and to an eatery where I can sample someone else’s version of lunch. But the ankle was bad and I knew a walk would be unpleasant and counterproductive, so I fixed a salad. Now eating is among those activities that can (but not always) cause my nose to run, and such was the case at lunch today. I blew my nose between bites at least a dozen times, then – had I been counting – I lost track. That enraged me, and by the time I finished, I was ready to throw things. Laundry was next, so I contented myself with kicking a plastic clothes basket a few times while shouting expletives. Then I lay down in the sun that streams onto my bed in the early afternoon.

Once I’d relaxed a bit, I tried doing some of the techniques relating to recovery, but after a few minutes I dozed. I woke to one load dry and a second ready to go in, so I did that and lay down again, this time at least touching more firmly on the techniques. My legs didn’t contract as they have been doing when I lay on my back, so I ended with a silent thanks.

After laundry was put away, I hobbled to the study to see if I could work. Now, the week was marked by the arrival of Apple TV on Wednesday. On Thursday, I was limber enough to physically set it up, and watched Cinema Paradiso because I stumbled across it. There were no subtitles, but I wept and sobbed my way through just the same. Friday afternoon, I watched The King of Hearts and realized that I’d formed crushes on every actor in that film way back in the early seventies, and had not recovered even a little in the decades since. But my goal was to watch The Dig.

I found the film on Netflix on my computer, but it would not show up on the tv. So, I tried AirPlay, and Mirroring, and whatever else was suggested. Nothing worked. I wanted to walk off my frustration, and that I couldn’t increased it. I finally tried streaming the film from my phone to the tv, and got the message that I had to use the television app instead of the phone app. Then something odd and wonderful happened. Because I had let the film play for a few minutes on my phone, it was now listed on the tv as “recently watched” so I chose “play from beginning” and the rest was history.

However, all those attempts at coupling computer and tv seemed to have had a negative side effect. Since my first effort at media magic, when I’d come back to my computer all the windows on the external display were screwed up, repositioned, and resized. This had never happened before, and as I keep a lot of things open, it is incredibly tedious to put everything back. Once I’d found the workaround for The Dig, I shut off all mirroring or streaming options to prevent the windows from going nuts again, but this morning when I logged on, everything was chaos.

This afternoon after a raging lunch and laundry, when I sat to work the windows were all screwed up, again. Need I mention that this enraged me? And I wanted to walk it off, couldn’t, so I screamed a lot and eventually found a little app that will probably fix the problem.

Two things are almost guaranteed to annoy me beyond reason; petty and bothersome bodily malfunctions and problems with electronics (many years ago it was typewriters that would make me ballistic – go figure). Today, I got a triple whammy.

One of the central tenets of Recovery is that the “patient” feel safe. Sometimes that means finding peace with things emotional. Friday, it was hole-in-the-heart sadness. Connect the dots.