Category: brain care
Changing the glass, resetting limits
– No more than 2 hours daily for all internet activity: email, FaceBook, Twitter, research, posting and illustrating blogs.
– This includes surfing on the phone.
– Had to save life of same friend twice in three months.
– Sold my boat/home.
– Moved 3 times.
– Travelled for 6 months at a stretch.
– Started an important romantic relationship.
– Had 2 serious threats hanging over my own life.
The wall, redux — with demons on the side
When I came to adulthood, I realized that I felt a powerful need to earn my right to take up space and breathe the air. You’d think I’d be a cringing slave with that underlying attitude, but I wasn’t. I felt I deserved good pay, reasonable work/life conditions, and common courtesy, because that was fair; I just didn’t deserve to live.
Once I could no longer work, but had to fight like mad to live, this was a bit stressful. Like many, I almost didn’t make it. But then, as the very deepest trough began fading into memory, I noticed that something remarkable had happened.
Rewind about 10 years… I was a nurse for eight years, which put me in a critical relationship to others at critical points in their lives. I might have dealt with 10 patients in an hour, but, in the moment that I was dealing with each person, that was the most important person in my life. I may have coded hundreds of people, but every life I fought for, I fought for with all I had.
There were no caveats or conditions: if you were my patient, you had my absolute attention every moment I was with you.
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| I think this healer outranks me, but you can see how focused he is on his patient. It’s like that. |
I found that it’s impossible for me to work hard for someone’s survival, and not come to care about them – no matter who or what they are.
Fast forward to where we started, after the deepest trough, around early 2010… I had spent several years increasingly incapacitated, used up all my money, all my favors, all my savings, and lost a lot of friends – some of them to the Grim Reaper.
I won’t go into the brutal and abusive bureaucracy of California EDD or Oakland Social Security offices, because if you haven’t been through it, you wouldn’t believe me. That bad. Worse, even.
I woke up one spring day, with a strange sense of dawning inside. It took an hour or two to wake up, and to realize that I’d been fighting so hard, for so long, for my own survival, that I had become important to myself.
I no longer felt I needed to earn the right to live.
Ever since that time, I’ve never had a serious case of any kind of block – writer’s block, self-care block, learning block, anything – that lasted more than a couple days, unless it was explicitly disease-related.
Then, with this move to a strange area, with no connections, near a city I almost loathe… To get real care, for the first time in years, from seven highly skilled and capable professionals…
I hit a wall. Not just a block, but a huge, massive, precision-crafted, towering, deeply bedded, gateless wall.
Since writing “Frustration at the wall“, I’ve been faking it in the hope of making it. That’s a lot of weeks to keep running up against the same damn wall!
I finally started talking about it – I’m a writer; I’m a woman; I process by words; let’s move on – and began to get unscrambled. Then I had the deeply disconcerting pleasure of having my brain picked apart, cleaned with a dental pick, and neatly reassembled by the deliciously incisive Dr. Faye Weinstein.
I can’t help thinking that the following is going to strike a few chords with some of my lovely readers…
I am, as she said with characteristic precision, “a helpful, compulsively self-reliant minimizer.” Really, why should I trust these people, who wield the power of Gods over what happens to me?
There’s a deep part of me that says “blow that, let’s go hide instead” and off I go, hiding behind advising on Facebook and diving into books and catching up on others’ crises; my condition is not that bad, so my care is not really that important, and it’s not like these people care more for me than their own crap anyway, so I’m on my own really.
My distraction activity is all very worthy, so I needn’t justify it. But, well, so much for the many new things I need to do to put together my own health…
Unconscious reactivity could be the death of me yet.
I said this illness would raise all your demons, even the ones you’ve hammered a stake through the hearts of. It turns out that the squat and fetid cranks who propped up my old conviction that I “don’t deserve to live” are still there, farting wetly and hawking loogies.
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| With apologies to Heironymous Bosch. |
The demons of our earliest perils can shape our responses to major change forever. The trick is to see them for what they are, face them honestly, and put them back where they belong: in the past.
(Easier said… I think a booger just landed in my hair. At least, I hope it was a booger.)
To add to that, with years of excruciating work behind me and more ahead, my old motto of “change or die” doesn’t carry the same weight: Yes, part of me wants to lie down and die. The frantic, aching, endless weariness is beyond description.
But change is more interesting. A lot more interesting. And I only get to do this life once.
Conscious curiosity could be the birth of me yet. With luck.
With a better sense of what I’m doing, I’m preparing to turn and, with tactful and gentle persistence, come to terms with those monsters.
I might as well. I’m going to be here awhile.
Speaking of which…
Marathon training update
After one day to recover from the trip south, I was able to pull off my .8 mile route up and down this hill, and recover enough a few hours later to unpack the car (that’s a lot of steps!) and get some things done. Today was a lot of appointments, which involved walking at least a mile on city surfaces.
On Thursday or Friday, I hope to increase my hill walking to 1.1 or 1.2 miles. We shall see. No more overdoing.
Marathoning, murder, and masses
Second thought: what a way to go – accomplishment, adrenaline, euphoria, and a quick blast.
Yesterday, ironically, I realized I was fully recovered from overdoing. That only took 11 days… I took careful walks around the park while recovering, so as not to lose much ground.
I grew up in Egypt, a Middle Eastern country. We were there in the relatively tranquil days of the late 1970s: Sadat was secure in power, a secularist who stood no nonsense and could be bought – excuse me, persuaded – into a peace treaty that ended several thousand years of war. (For the meantime.)
Islam was a thoughtful, neighborly religion. Guests were treated like the loveliest royalty. A blonde 13-year-old girl with a forward figure could (at least, did) walk the streets in daylight fearing nothing more than vile remarks and, in a crowd, a vile grope.
Moreover, I’ve always been an introvert in the Myers-Briggs sense, meaning that I recharge in solitude and that I find society in large doses simply exhausting.
Now, with CRPS, this distaste for crowds has become a deep aversion. The physical dynamic of being in crowds is unbearable: when people bump me unexpectedly, it’s horrific; the noise overwhelms my sensory brain, which, let’s face it, is overworked already; and, of course, my hotwired autonomic nervous system is ready with the fight or flight response… with nowhere to go that isn’t in the crowd.
Breathe. Breathe. Breathe.
I was reading Angela N. Hunt’s book about living while training for a first marathon, and her description of the starting crowd was appalling. For me, it would be like being inside a tiny electric fence, cattle jostling around against the outside, bashing and zapping me mindlessly and endlessly.
Not do-able. Not even think-able.
But that’s just a problem, and problems are meant to be solved.
There are several possible solutions: invoke the ADA and start in my own class behind the crowd; rustle up about five good buddies — preferably large, sturdy types — to run around me for the first half, and be a better fence until the crowd thins enough;
run a different marathon course over open country, with only a handful of others; or abandon the whole thing.
I can hear some strenuous votes for the last option. In the wake of the Boston marathon bombing, I’ll ignore them. Completely.
I will go on. If distance is not an insuperable barrier, then neither is willful fear. I’m a woman, weakened, disabled, and rather poor; I have enough to be afraid of. I don’t let it stop me. Why should this? I’ll wear the names of the dead, if it helps. I won’t let it stop me.
I will go on. I’ll find a way to avoid the crowds, in some creative and tasteful fashion.
I will go on.
“Watch me go.”
Back in the saddle again
Dignity is optional. Progress is not. Words I live by.
My new kitten has changed apparent gender twice, and is back to being a boy kitty — not that it matters in any practical way. I was looking for a name as elegant, good-natured and playful as he/she/it, while treating an upper respiratory infection that made that left eye look like a mouse:
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| My cat’s mouse |
But then, with returning health and strength, his natural energy and violence reasserted itself. He has exactly two gears:
1. Unconscious (or nearly so)
2. Full-tilt, greedy, grasping, and spikily impulsive (as the scratch-marks around my blinked eyelashes attest)
So I’ve named him Siddhartha, in the hope that something will rub off.
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| Siddhi playing hide-n-seek. (“Siddi” is an Arabic address used towards a respectable gentleman. Another fine malapropism from the chronically punny.) |
All of his front nails are trimmed now…
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| In health care, we call this “desensitization” |
As for my own care, I’m up to 2/3 of my reiki time and 2/3 of my basic qi gong routine, and hope to get some t’ai chi in today as well. This is tremendous progress.
Vegetables are once again a chief component of my diet, thanks in no small part to an enormous bag of frozen “Normandy style” blend from Costco and our local dollar store, which sells cheap organic produce out of cardboard boxes.
I actually did laundry yesterday. Today, I hope to take a shower and — gasp — wash my hair!
I realize only a minority of you will find that truly inspiring, but the rest can have a good laugh… and then think for a minute 🙂
For me, life with CRPS is indeed a matter of tiny triumphs and great goals. For the record, I’m still bound and determined to advance the search for a cure, and yes, I’ve gotten slightly more concrete in my ideas about that… More to come in time.
And now, just for the deliciously hokey yodeling at the end…
Links list:
Here is a recap and explication of the links used in this post:
- Frustration at the wall
- The Buddhist World: Gautama Buddha (external site)
- On desensitization, I linked to my post on Remembering and re-membering.
Also see:
The sheer activity of Espom salt
Pushing back on neuroplasticity - Where you can buy Lee Holden’s excellent beginner routine, which gets more interesting, more useful and more inwardly complex the more I do it: Qi Gong Flow (external site; his work highly recommended)
- An excellent blog post on the relationship between tiny triumphs and great goals: New year, new thinking from Elle and the Auto Gnome (external site, very highly recommended)
Pushing back on neuroplasticity
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from the first refusal to cut pain signals off…
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to the growth of the brain cortex area that monitors that body part, so it can handle more pain signals and provide less space for normal body areas…
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to the deeper remapping and rewiring that alters cognition, disrupts memory formation, screws up autonomic signalling, knocks endocrine and digestive function out of whack…
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and so forth.
It’s important to stay on top of the brain, so to speak.
Having said that, it’s not completely reciprocal, nor is it ever under perfect control — unlike a good trapeze act.
- neurons hook up, and a connection (or association) is made;
- if the connection gets used (or the association is allowed to stand), more neurons hook up to make it stronger;
- once enough neurons have hooked up, the connection becomes like a good road;
- and the thing about good roads is, they get used, even if they’re used for something odd.
- Make sure the roads in your brain are useful to you.
- Do that by pruning the connections you don’t want.
- Prune those connections by letting the associations die.
- Let a connection die by deciding to think about, or do, something else, whenever it comes up.
Consistently. Persistently. Relentlessly. - And keep making that decision every time it comes up.
It works by a negative, which is not how we are taught to do things: turn away from the response, shut out the perception, ignore the link. That’s how you prune an unhealthy connection.
It takes time, but it works. The time will pass anyway, so your brain might as well be better off at the end of it…
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| Only constructive connections, please. |
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| Egrets make great distraction, especially in funny socks. |






















