"If we did the things we are capable of,
we would astound ourselves."
Thomas Alva Edison
Dear visitor, dear friends of art,
A new apartment has recently become Nurrius' home,
Luxemburgerstrasse 306, D-50354 Huerth, Germany, (phone is 49 1520 99 389 02),
and the home of my painting studio, if only a tiny rehab one.
On 24.Nov2008, a non-malignant tumor had to be removed from my spinal chord, just below the skull. The studio had to be closed down, since no one knew when or if I'd be able to paint again, or whether I'd come back in one piece.
On 23Nov09, at 5:30 in the morning, I left the studio. The last painting I worked on remained unfinished, I
had to leave it like this.
This page will be about the operation, the time leading up to it, and its aftermath. You will find accounts and pictures of the rehab process, which I'm happy to announce is happening, since I didn't die under surgery or wind up paralyzed in a bed or strapped to a battery-powered wheelchair.
I made it to the clinic in northern Germany by train and walked in on my own little feet, to wake up after surgery unable to even sit up in bed for perhaps three weeks. I couldn't stand or walk. My left arm was an object lying beside me, mostly numb, including its hand (which I couldn't move to amount to very much for three weeks.
After six weeks of hospital up north, I was moved to a rehab-clinic east of Cologne, in a beautiful hilly country setting, where I stayed for almost nine weeks.
After a few weeks of rehab-clinic, I lost the urinary catheter I had
been given in hospital and was then entitled to use the in-house pool.
My relief was enormous! I knew that once I got myself in the water,
my rehab work would do a little jump forward. And so it did.
The picture, taken by the life-guard, shows me in the rehab clinic's pool, thoroughly pleased. Notice the slim shoulders, the thin upper arms.
They were much thinner the day after surgery, if I remember rightly.
I found that I could not swim anymore. Too weak, both arms and legs, with spasms pulling the left arm alongside the torso once I started doing the armstroke. I lay there in the water and laughed out loud.
Fortunately, I could laugh about it. I had stopped weeping in despair just before newyear's eve, almost stopped, that is, don't do it often anymore. The lifeguard came from his booth and laughed with me, saying,
"don't worry, it happens to many the first time, I've seen it often. Keep practising, you'll be fine." Love that guy.
By the time I got in the pool, I had reclaimed climbing stairs and become good at it. Stairs -- a low-cost workout tool, available practically everywhere, to strengthen legs.
But breast-swimming requires ~and exercises~ different muscles on the legs than walking and stair-climbing do. The result is, inevitably,
stronger legs. They get sturdier. Life gets easier.
The old studio, 2001 to early 2008. Small shop, 31 sqare meters.
The left hand still is highly numb, by the way, like its arm and shoulder, but with uncounted hours of exercising I came to put growing control back into it. I learned to stand again, walk again, sweat-of-the-brow style (now that's an understatement, if I ever made one).
My right hand was usable some, after surgery, and by the end of the first week it would hold a spoon again, I didn't need to be fed soup any more.
How good lunch tasted that day, a stew of carrots, peas, potatoes, and franks, I'll remember all my life. It wasn't even really hot. "Nobody liked soup today", nursing apprentice Suzanna told me, "but ~you~ asked for a second helping."
It was such fun to eat with my own hand holding a spoon, I would've enjoyed anything and kissed the cook for it. Almost kissed my nurse. She was lovely, too.
Much of my feet is numb, though not all of that, including most of the ankles, i.e., the joints themselves, then the knees, the hip joints, most of the legs, the abdomen (can't actually feel the chair under me) largely numb, parts of my back numb, chest (especially the left side).
The 2008 studio, a 70 square meter shop a few meters from the traffic
lights of a large intersection, with many times the volume of cars
stopping with the lights red -- my audience/customers.
The blue sign on the left-hand side says "noch keine Geschenkidee?"
In English, "don't know what to give?" My favorite slogan.
Roughly three quarters of the body surface and many areas inside are numb in varying degrees, ranging from "sensitivity slightly reduced" to "body part gone, not there".
This invites situations sometimes from bizarre to hilarious. Like waking up in the morning with one numb leg on top of the other, not understanding at first why I can't lift or move the lower one, not ~knowing~ (equals: not feeling) that it's the lower one.
Or practising eating with a numb left hand, holding a sandwich with it:
Halfway through a slice of bread, butter and soft cheese, feel something oddly thick and formidable between my teeth. My left forefinger got inbetween the sandwich parts, unnoticed.
Very funny :-) I'm in good spirits when I can laugh about stuff like that.
When I don't see the left hand, things drop out of it or funny situations happen to it. And of course I have to guard it, protect it, like all of the left arm, so it doesn't run into something or get squashed.
The left hand cannot feel pressure. So, I keep finding it in bed somewhere. Usually, it's someplace else than where I "feel" it is. No data or ~false~ data arrives regarding the position of the left arm's joints.
That hand can feel temperature, however, pain (which is evidently something else than pressure, oddly enough), and can feel whether something is rough or soft.
The shop last November. It had much more display space than the former shop.
I put nice flowery plants in front, next to the pedestrian walk, my little 'garden'.
All these sensory functions evidently run on discrete "wires", all seperate from each other. Very smart rig, in my oppinion. It helps the organism survive -- they don't fail all at the same time, at least not in this case.
Plus, I can ~move~ hand and arm again, more and more, inspite of all the sensory failure. Tie my shoe-laces while watching the hands, and only while watching them. Fascinating.
Not so fascinating are the spasms. I have the stretching kind, they work to stretch the limbs, the rump. Low-grade spasms I have, so I'm told. Whew. Not funny. When they're strong, I walk wobbly lines, like a drunk person.
Thank goodness portrait-painters are a patient species, 'cause you have to be awful patient in this rehab process. They're patient of necessity, you know, because your hands don't do what you want when you start learning to do portraits. The impatient ones never get there, they don't arrive at making a good portrait.
"A good portrait", that range begins I firmly believe at the notch where you're asked what the charge is for your work.
There'll be frequent additions and updates to this page, both on latest news and pre-surgery history, as well as accounts of the difficult hospital days. My hope is that someone in similar struggles might find something helpful or useful, or encouraging. I'll strive to add some of those, if I can.
Working with numb and partly numb hands
My new vacuum cleaner has this paper bag. You're s'posed to fit
a plastic nozzle into the opening shown here, push it through the
grey rubber seal. It's a tight fit, to keep the bag from slipping
off when the strong motor (1500 watts) is running.
To get this done without tearing the paper, I needed to pull the
bag apart first, pull the front side shown here away from the rear
side, so as to create some space for the plastic nozzle to fit in.
It's worth mentioning ahead of time that I intend to go all the way, become fully well, functional, and healed, reclaim my painting skills and acquire new ones. In fact, I plan to be in better shape than before this trying episode. That is an ambitious goal, I know. Statistics are against it. Way against it.
I don't know at this time how to get there. But if I set a very high goal, I feel, my chances are better to succeed, than with a small and "reasonable" goal. The improvements sofar are very encouraging, and if I extrapolate what advances have been possible in the past seven months, there is a fair chance I could actually make it.
Currently, I don't experience any spectacular, life-changing gains. Slowly but surely, "small moves, Ellie, small moves",
at 6:44 minutes.
So, keep moving, Nurrius, keep pitching, go for it.
Here begins my account, my rehab diary.
My body is improving, slowly but surely, each week. Today I carried groceries in a box, a tough exercise for my arms, and finally spilled them on the walk. I have atrophies as well as paralyzed areas within muscles, paralyzed in various degrees, and numb areas in numerous degrees of numbness. Atrophy means that muscle fibre was decreased in volume or number.
I coudn't do it. Not with a left hand that can't feel any pressure and a right hand whose
skin is numb as if wearing a glove of cold wax. Coudn't risk tearing the bag -- I had only
the one the machine came with. Hmm. What now. Ask a neighbor. Or...
So, on the back of the filter bag, I fixed this piece of packaging tape.
Both atrophy and paralysis of muscle fibre result in reduced strength. It is absolutely startling just how weak a body can get. It's unbelievable. No book or movie could ever have told me this, communicated or made real to me what this is like. Quite shocking, very discouraging at times, very disheartening, and extremely humbling. I'm awfully glad that part is history, though sometimes I feel I'm not over the hump yet.
Today, however, I'm very on top and feeling good about the progress I've made.
So, after I spilled the groceries on the walk today, I re-stacked the carton and found a better way to carry it. I had taken it on my stronger, right arm, as well as on my right shoulder. Now I wrapped my arms around it, hugged it it to my chest, locking onto my numb hand with my better hand.
Suddenly, I noticed my stride improved, my toes unclenched some, my feet uncramped some, I could lift my left foot better. It surprised me so, I hadn't expected that. Both my heels touched the ground softer, feet rolled smoother, my pace longer. Amazing.
Maybe embracing the cardboard box of goods put the right kind of tension on the muscles between the shoulder blades, I thought, so as to relax some pressure there in the right places, on the nerves coming from the spinal chord, in the former surgery area of my neck. I don't know anything about this, and, frankly, it doesn't make any kind of sense to me why such an improvement could be turned on and off with holding or not holding a box to your chest in a certain way.
I was so fascinated with this unexpected improvement, tasting it as I walked, thrilled. I decided to carry the box of groceries to the gym I'd left this morning, just to share this win, to show the physsical therapist there this new "equipment" of a carton of food and the stunning exercise it made possible, and the bettered ability to walk.
Perhaps she would inspect this, I imagined, watch me walk the red rubber chip path in the gym, study my stride, arms, the size of the box, and maybe compose a future exercise from this, so I hoped, to repeat or magnify this gain. These physical therapists are creative people, most of them, usually pleased to hear of gains. They're encouraging and good to be around.
This was now a handle, easy for my right hand to grasp. There was no way I could grasp the
bare paper with this "cold wax glove" numb feeling it has. You know, like picking up a coin
from a table is hard when you can't feel enough, when your fingertips aren't sensitive enough.
I like encouragement. I like courage. Even if it's just a motion picture. Like this one,
which I've been gobbling up since yesterday, I mean the whole film.
When I got there with the box under my arms, the gym was closed for the weekend.
It's great to grow.
Last week I helped friends by mopping floor and wiping furniture, large room, for two hours, hard work for this body. Stayed with it 'til it was complete, though my body wanted to stop earlier. Felt good to give something in return, for a change, with all the taking I've been doing, being on welfare and all, relying heavily on friends (cut that one down close to zero). I've begun reversing that one-way "receiving" flow, if on a very small scale as yet.
MRI of today says 'no new tumors, all tumor-free in there'. Whew, was I relieved. The radiologist told me, as he did earlier, "I repeat that I don't know how you are walking and moving the way you do, looking at these pictures."
Body continues to get stronger at a slow pace, each week, a steady and very necessary trend. Still need to get much stronger just to cope with my household, get out of a bathtub, take a shirt off with crossed arms and so on. Still can't pull up my pants with my left arm. I'm happy with my small improvements. Trying to follow this man's advise,
Pulling the bag's rear side away from the front side using the "handle". The left
hand here is holding the cardboard part into which the plastic nozzle is inserted.
Had more PNF-Exercises today in physical therapy. They are ~so~ good, gosh.
For the first time since the operation, in the tub this morning I got out by turning to the left side, on my left hand and arm, instead of to the right. Very pleased about that.
Tomorrow at 07:00 in the morning is my next physical therapy
period, so I gotta be off. It's 22:35 local time here in Huerth, Germany, just south of Cologne. To all, a good night.
Tough exercise this morning, aimed at left quads, not "PNF" technique, but "Bobath", a different system of physical therapy. Could've insisted on PNF, but my therapist had prepared something for my left leg. She said, "we have to improve your walking" (oh so right), she had thought about me, which is sweet.
She wants me to win. I worked hard at it and gave her a big ackknowledgement ("cooool exercise!") and a big smile.
Very tough exercise for ~me~, I should add, since I have paralysed parts in my left thigh.
There's a lot to learn about physical therapy, and a lot to learn in general. I like these young ladies' point:
Did a little MTT afterwards, then went upstairs to "ergotherapy". I'll find out what that is in English. This branch of therapy teaches and exercises abilities and skills regarding the interactions of the patient with her or his environment.
That could be practising to use fork and knife for someone who had a stroke or an operation, or a huge range of other skills and abilities. This therapy often does nothing else than is done in "physical therapy", if such exercises are preliminary to the actual skill to be acquired.
Like if the skill is dancing, my prelims include increasing leg strength, improving my sense of balance, reducing spasms if possible, training the ability to stand on one leg.
What I'm still looking for is an ergotherapy practise where a female therapist will do dance as a therapy. These folks I have now won't or can't. I expect an increase in rehab speed once I engage in such a process. Dancing is high-co-ordination work, and great fun, which will fuel the effort it takes.
The black plastic nozzle is now inserted in the cardboard part of the paper bag. My lower
hand in this photo is still holding onto the packaging tape "handle".
Montag, 24. August 09
Erhebender Augenblick heute: das erste der Bilder ist zurück gebracht worden zum Fertigmalen, das vor der OP unfertig meinen Kunden überreicht wurde, in der Hoffnung, dass ich erstens zurück komme und zweitens wieder malfähig werde. Ein Portrait dreier Schwestern, eine davon meine Kundin. Sie war sich sicher, dass ich es zuende male, hat sie kürzlich geschrieben -- das hat mich sehr berührt.
Spastiken krass heute, puh, nicht witzig. Kann immer sicherer aus der Badewanne aussteigen. Letzte Woche in der Dusche beim Waschen der Fußsohlen ausgerutscht und gestürzt, aber harmlos (war mir noch nie passiert).
Bald kommt ein Making-of-Foto aus dem Reha-Atelier, meinem Wohnzimmer, das die Arbeit an diesem Dreierportrait zeigt. Gute Nacht, liebe Welt.
Dienstag, 25. August 2009
Zum Sturz in der Dusche von letzter Woche:
Kleinen Schnitt am rechten großen Zeh zugezogen, links vom Nagel, keine Ahnung an was ich mich geschnitten habe. Den Sturz selber hab ich nicht erlebt, ich kam erst zu mir, als ich in Embryohaltung in der Dusche lag. Das ging "zackdaliegste", keine Haltegriffe in der Dusche, aber die braucht man ja auch nicht, wenn man gesund ist.
Spannend war nun das Aufstehen. Ich kam nicht hoch, alles nass und rutschig, nichts zum Festhalten. Kam nicht hoch, nicht für Geld und Kuchen! Hab schliesslich die Schiebetüren geöffnet (sind beide kaputt, lassen sich nicht leicht schieben), in Rückenlage die Beine rausgestreckt, Füsse auf dem Fliesenboden aufgesetzt, Bauchmuskeln angestrengt und aufgesetzt. Aber das Aufstehen auf die Füsse war mühsam und unfallgefährlich, nichts zum Festhalten. Hat irgendwie geklappt, mit Geduld und Spucke. "Wie hast Du das gemacht?" Antwort: "Mit Absicht :-)."
Muss mich beim nächsten mal in dieser Dusche (war dort zu Gast, es war mein Gästezimmer, im Bergischen Land) auf einen Stuhl setzen, den ich unmittelbar vor die Dusche stelle, und die Füsse in die Dusche stellen und sie waschen. Jawoll, so gehts. Zuhause setz ich mich auf den Wannenrand, Füsse in der Badewanne, wenn ich dusche, aber zur Zeit bade ich nur, weil die Handbrause zerfallen ist und ich kein Geld hab für ne Neue.
Heute gehts mir den Umständen entsprechend gut, im Moment sogar sehr gut. Ich sitze im Internetladen und tippe mit zwei Zeigefingern, ein sehr gutes Zeichen. Es bedeutet, dass der linke Unterarm weich genug ist, dass ich mit der linken Hand etwas anfangen kann. Die Muskeln, die die Finger steuern, sitzen im Unterarm.
Gestern 12:30 PNF in Ründeroth gemacht.
Heute PNF gemacht mit Jenny, 15:30. Morgen um 09:30 PNF in Ründeroth. PNF ist gut, wie ich Euch schon ausführlich vorgeschwärmt habe. Hab hier was für Euch, vorhin gefunden:
So könnt Ihr mal Beispiele sehen, wie PNF-Übungen aussehen.
28 Nov 2011
Nurrius has been back writing the German diary for a few days, and I'll be catching up here on the English side.
Met an Irishman on the train home from Düsseldorf today, tried and true.
A long piece of work lies behind me on this rehab journey, since I last talked to you in detail. Many, many gains have been fought for and won. My walking and standing have hugely improved, which is an enormous relief in day to day livng. Yet Itoday, for instance, with muscle-hypertension and spasms high, life is tedious, and I long for more relief.
I need to be brief tonight, house-cleaning and laundry are in progress and a really tough physical exercise, climbing stairs and working with two arms while standing (dish-washing -- you wouldn't believe how laborious this can be for someone with "incomplete paraplegia")) and the stop-and-go of walking about.the kitchen.
I'll be writing more soon, letting you in on what's been achieved and happening and so on since 2009.