Tuesday, June 14
I slept an hour or so, woke and was awake until 07:00, hassling temperatures and trying to find a comfortable position. Janice puzzled that I seem to be avoiding recovery.
So, I asked Friend why I’m afraid to recover and got a rather long and indirect answer. This is the short version, from his point of view: “You (me) deserve to recover, your work deserves to be produced and shared and published, you still have much to do. But it’s not all about you. You want to thank your friends who offer so much support, there is no thanks better than recovery. And recovery is to admit that you can do nothing by yourself, everything is about the web.” (The bit about my work is a response to a mental habit I have of thinking that I’m too old to hang my hat on a professional peg; the same mental habit I was deflated by at the age of 25, 32, 44, 51, and 65. Probably other years, too.)
The day that followed was marked by difficulty walking, rising, sitting, and typing. I remained in a good mood throughout, but enjoyed little comfort. A short nap before lunch was delicious, but otherwise attempts were soon greeted by restless leg syndrome and trembling each time I traded deep snooze for something lighter. Friend says it is all about the brain looking for balance.
Wednesday, June 15
Another night like last, very little sleep, pacing the hall for long periods, hassling temperature, little comfort. Lots of swearing. However, walking, turning, and rising were all improved during my relentless pacing.
This morning’s was the worst session walking the garage ever (or at least for a long time). An hour nap in the recliner left me shaky, frozen, and with something resembling nausea. Chest tight, mouth twitchy, feeling awful, and for the first time afraid to be alone. Friend says it’s brain recalibration. Have never felt worse that I can remember.
Then Monika arrived to give me a lesson in Alexander Technique, and bit by bit we deconstructed the mental habits and physical locks that were making me miserable. And I realized that I resist help and treatment, that I cheer for the bad guys. That I relish every imagined “proof” that the disease is getting worse and is rendering me disabled.
I’ve suspected this for awhile now, but today’s lesson gave me the real proof that the official propaganda of “degenerative” and “incurable” is the first mental habit to release – and the most insidiously clinging – that those of us in recovery have to face. And this is all somehow woven together with my father’s PD in that since he suffered who am I to do otherwise? So each notion of worsening symptoms is embraced as a demonstration of my love; that I am willing to suffer as he did, and that even as in so many other ways I may have disappointed him, in this we can exercise solidarity.
Monika (and Janice) also advise embracing rather than resisting how I feel, accepting it as a way of remaining in the present, which is the only place that healing can happen.
Then I took a fifty minute nap in the recliner and woke feeling mentally clear but physically awful; nothing new, the same stuff as earlier, just without the anger. For now.
Thursday, June 16
Got to bed around midnight, slept until 03:30, then spend a sleepy 90 minutes opening windows to create a draft and waiting for the temperature to fall (for some reason the a/c stopped being effective). Thereafter, I remember being aware of Roman in the room, but had no awareness of his trying to wake me. He later told me that he tried five or six times but I would just roll over and continue sleeping. He finally decided that I must have needed the extra sleep and let me be.
I woke some hours later and tried to roll over to look at the clock. I couldn’t do it. I called for Roman. No response. After struggling for awhile I got up on all fours and managed to sit on the edge of the bed, but it was a heart pounding, sweat inducing workout. After a few minutes I was able to rise and walk to the bathroom. Then I called Roman on the phone who had taken advantage of my unconsciousness to run an errand. It was only then that I noticed the clock; a few minutes shy of noon!
Roman was right not to wake me, I had become dangerously tired. But after breakfast (at noon) and a wash and change of clothes, I napped in the recliner for almost an hour.
It is tempting to indulge in a freakout. Friend is constantly warning against it. The brain, he says, wants to maintain the status quo, and is overreacting in its efforts. I tried to do the habit-changing exercises that Janice recommends in Stuck on Pause, but fell a bit short. The habit I want changed is pushing away love (or you could call it “undermining my every effort”) from the false assumption that love (or success) is not safe. Love is the only safe thing there is. If the brain craves safety, and it does, there is no safer refuge than in the heart. I’ll keep trying.
I paced the hall a bunch, had lunch and finished watching a movie.
By mid-afternoon, I was uncomfortable everywhere, and continued to feel bad regardless of my state of mind, though not falling into fear made it all more bearable.
My former neighbors threw a party for me in my former garden. Roman helped organize it, Renzo made sure everyone showed and made a fig and walnut crostata. An amazing number of plants managed to survive the summer of 2019 when I was forced to abandon the garden, and Lavinia, who lives there now, has done wonderful things. It was so good to see everyone. The street won awards for most beautiful, as it always does, and always deserves.
Walking, standing, sitting continues to be difficult, which makes me both angry and sad.
Friday, June 16
I blew up yesterday, frustrated with my physical state, and Roman happened to be there. “There is no utility in anger,” he warned. He’s right. Acceptance is an important part of healing and anger arises from denial.
I slept three and a half hours in bed last night, followed by 90 minutes pacing, one hour in the recliner, another hour pacing, and an hour in the recliner. The shaking as I’m waking phenomenon has spread to shaking for many minutes after I get up (even my tongue and lips vibrate), and RLS didn’t leave me much peace in the recliner. In less than a week, I’ve gone from being on the verge of sprinting to rapidly increasing poverty of movement. Friend quotes the Parkinson’s Recovery pioneers (“I don’t know what’s going on but it sure ain’t Parkinson’s”) because, unlike PD, the symptoms change constantly, and I hope he’s right.
I napped quite a lot in the recliner and paced quite a lot in between. Muscles are weird and tight. Walking the sagrato was a complete shambles, a flashback to almost a year ago just after two weeks in hospital for broken ribs – only no hospital, ribs, or atrophied muscles.
The evening walk on the sagrato was much better, and despite my naps, it wore me out. A light supper of mozzarella and tomato triggered a ten minute episode of sneezing and nose blowing. I have no idea why. I feel lighter tonight than I have felt in awhile, and while current symptoms continue to branch into interesting varieties, my relationship with Friend becomes more constant and that keeps me happy. Tonight is Corteo delle Dame which I am sorry to miss. Next year.
Saturday, June 18
I went to bed at midnight, slept well for an hour and a half, then felt the need to get up. Like on Thursday, I could barely claw my way out of bed, gasping and shaking. Once up, I asked Friend what to do (we’ve become especially close last few days) and he answered, pace until you feel grounded. I found walking (and typing) to be relatively easy, so I paced for two and a half hours, going to bed at four, figuring that would put me close to Roman’s arrival at eight in case of a repeat. I slept for another 90 minutes, needed to get out of bed and repeated the whole thing over except for the pacing. I admit, I am frightened. The recliner gives rise to RLS, and the bed traps me, I don’t know how I will sleep.
Well, I took several pleasant naps during the course of the late morning and early afternoon, and Roman took me to order a new mattress. So steps have been taken.
Sunday, June 19
This morning around three, I suddenly woke and bounded out of bed. I sat on the far edge from where I had slept, half conscious, and convinced for a half hour or more that I was waiting for someone to arrive before I returned to sleep. To my knowledge no one ever did, and I eventually crawled back to my spot and fell into an instant slumber. Natalia woke me about five hours later. I was groggy and not ready to get up even after eight hours, but she convinced me that we needed to be outdoors before the heat arrived, so I acquiesced. Once up, I noticed that I felt great even though I could hardly walk.
We went first to the garage where I proved that I could hardly walk. That effort was quickly abandoned, and Natalia wheeled me into town. Perhaps she had told me of her plan – I thought we were just going for a spremuta (fresh orange juice) – but after the juice we continued to snoop around for places in the shade, and I realized that she was setting us up for Corteo Storico, the male costume parade in celebration of Corpus Domini. We found a spot across from Montanucci, and parked the chair.
For the next hour we watched a modern corteo pass on the street, featuring costumes of a daily sort, many of them quite beautiful. Then the drums and trumpets sounded, and shortly thereafter began another hour of men in doublet and hose carrying weapons and flags representing Orvieto as it was in about 1265. It’s beautifully done, but I prefer Corteo delle Dame, honoring women of the same period. By the end of the parade I was massively uncomfortable and nodding off. But it was lovely of Natalia to have taken me there.
The afternoon was spent napping and pacing the hall.
Last night I spoke with Ted, a member of the PD Recovery support group who lives outside of Amsterdam. We have been leading parallel lives with regard to recovery; a day of rather startling fluidity followed by several days of better than usual movement, then profound limpness (jello legs, hardly able to walk). We both were thrilled by the former and freaked by the latter, and trading notes was a great help.
This afternoon was marked by several short naps, and with hall pacings in between.
Monday, June 20
I slept nine hours last night with only one short break in the middle. Then I fell asleep waiting for the dentist, in his chair, and right after lunch. After checking messages, I napped more. Our only walk today was an evening on the sagrato, and while it won no prizes, it wasn’t bad.
The lesson for the week is to do the best I can with what I have at the moment, not to frustrate myself by trying to replicate yesterday’s successes.
Giuseppe, my dentist, shook my hand after his work, and held it and squeezed it, and so did two other friends on our way home. I love it here.