Patient and Patience
Note: this series of letters were written a few years ago from my bed in hospital in order to let my family
and some friends know what was going on at the time.
I am not even sure exactly when I first noticed the rash, but there it was, sort of monopolising a major part of my upper back.
Couldn’t really see it, but I could feel that it was lurking back there…and didn’t like it. And then about a week later, it had
somehow snuck on over to my chest as well. But, it was just a bit of a rash, so I thought not too much of it. I was
pretty focused on the impending spring, as I had been able to spend the previous several weeks onboard Angelina in Palma
and whilst the weather had not been the best, at least it was better than in England, where I was headed.
London was great – with the exception of the cold, damp, grey skies that seem to be present whenever I visit – and
I was able to accomplish most of what the trip was for. Then it was off to Paris for a few days. And that is when things
began to change.
First, I found that my legs were getting stiffer than a teenager who just devoured a bottle of Viagra. Really painful to
stand and walk, so I did what most people like me do – I took as many Advil and Panadol as I could get my hands on.
Problem solved...or so I thought.
After three days, I flew back to Palma and immediately made an appointment with a physiotherapist I knew on the island.
The following morning I hobbled down to her office and after a quick overview of what was happening to my body, she
began to bend me into pretzel-like shapes, all the time whispering things like, ‘oh yes, this is good,’ and my favourite, ‘hmmmm.’
I have no idea what all that means, but from my perspective, it was not quite as much fun as I would expect getting polio
might be. She filled in her contortionist merit badge check sheet and told me that I should probably really do to see a doctor.
Well, thank you very much. And so glad that I only had to pay you €40 for that advice. At least she gave me the name of a
doctor who was close to her office, as right about then, I was only marginally able to even think about walking.
This visit only ended up costing me €60, and for this fee, I was told, ‘whew, I have no idea what this could be. Have
you thought about seeing a specialist? I know one.’ Oh yes, then he gave me the bill for the 60 euros. Needless to
say, I didn’t call his guy. But instead, I actually did something quite clever – I rang my insurance agent and asked
him who was good, and of equal importance, who would be covered by my policy.
Okay, so I did get connected with a very good doctor. He is Spanish and whilst he does speak several Spanish
dialects, as well as French, his English probably doesn’t appear on his CV in the category of ‘high skills and
competencies.’ But that’s okay, as my Spanish is not exactly world class either. So we muddle through trying to
sort out what this thing is that I have.
The first plan he came up with was for me to take some medication in the form of pills, two different types to
be exact. These were to counteract the virus that the doctor thought I had. And the virus idea sounded pretty
good to me – a virus lodged in my spine would be able to muck up my walking, give me lots of lower back pain
(something I had in copious amounts), and probably surface the rash that was the first symptom. So we went off
to treat the virus with these meds. And because we were by now really buddies, he said I could keep taking the
Naprosyn I found on the boat as an anti-inflammatory painkiller thing. Nice Naprosyn. So, go home and do this
for a few days and we will see how it goes I was told. Or at least that what it sounded like. So off I went, but by
the time I had returned to Angelina, I had a secret ace-up-my-sleeve.
Yes, I did plan on taking the meds, but my real plan was to visualise the virus into submission. You know, ‘see
the virus’ and then ‘see it going away.’ Shoot, this method is really good and it did work for me years ago when I
had a stomach ulcer (or maybe just the change in my diet and the reduction of stress helped out a bit). Anyway,
that was my plan.
Visualising something like a virus is not easy work. First, I have no idea what it really would look like if it walked
up to me in the street and hit me (as it apparently did). But I have seen enough pictures of ‘virusy’ looking things
in Electron Microscope Monthly and other scientific journals that I read all the time, so I at least had that going
for me. My plan was get a good solid picture of the virus in my mind, then hit it aggressively with medical thoughts
such as, ‘be gone with you,’ and ‘do not pass go, do not collect anymore body functions,’ and the ever popular,
‘just fuck off.’ Quite the plan, eh?
Just in case this plan wasn’t good enough, I actually considered something that I learned about from some friends
in high school in America. Dave, John, and Bob were all Christian Scientists, and as you may know, this is the
religion founded by Mary Baker Eddy, a woman who believed that…. well, I never really did get the gist of it. But
what I do remember is being told one night out that this religion really did work, and my friends had the evidence of it.
When about 9 or 10 as I recall, Bob had broken his arm in some sporting event (who puts their kids into arm-breakable
sporting events at that age I still wonder) and as they were Christian Scientists, which meant that Bob was not allowed
to be treated by a doctor. Really, this is what it is all about – instead of going to a doctor or hospital, Bob’s mother
sat home and read to him from Mary Baker Eddy’s version of DIY. I repeated what I had been told – ‘your Mom just
read to you and your arm healed?’ ‘Yes,’ was the reply from not only Bob, but Dave and John too – both witnesses to
the near miracle they said.
Well I would have considered my reaction to this to be ‘gobsmacked’ but I didn’t learn that expression until I moved
to London in 1999, so my reaction was probably more like ‘wow, cool.’ But then Bob did let it slip that his Mom
had read to him for 8 weeks. ‘Eight weeks? You mean you just laid in your room without moving your arm for eight
flippin' weeks while your Mom read to you?’ Well no shit it healed. And I’ll bet he would have healed faster if she
had not read to him day after day.
Okay, back to my little problem. I knew that I wouldn’t be able to even find Bob’s Mom or have any desire to have
someone sit and read to me for weeks, so it was now up to the doctor’s new solution of daily shots of some mystical
medication or spend a few days in hospital. Don’t like shots, and probably like hospitals even less.
Last time I was in hospital, I ended up with two semi-smiley 4” long scars that weren’t even symmetrically
placed, and they gave me shots too. Bastards. And to top it all off, I have never been that great about following
doctor’s instructions apparently. After the dual operation event, the doctor told me (he claimed later) that I would
need to rest for 45 days before resuming normal activity. So the day after the operation, whilst I was still pretty
well packed with god-knows-what hard-core medication, I checked myself out of the hospital and three days later
flew up to London. The day after that, I flew to Amsterdam. And the day after that, I was back in hospital.
Okay, so not the best at following medical instructions. This time, I thought that maybe, just maybe, I should
listen to the doctor, so I checked into a very nice new hospital in Palma where my doctor is a senior medical-type
person. And here I sit.
The doc’s (lucky me, I get more than one doctor, probably because I am either very special or just have a great
insurance card) that are seeing me think that they have it sorted out, or at least what it is that has taken up residence
in me. They say it is a virus called the Guillaine-Barre Syndrome, which translates to ‘the really bad bastard nasty
mean old virus that doesn’t like people with my initials’ or something like that. It is hard to do a perfect translation
from the Latin medical terms to Spanish to English. But I think that this is what it is called.
Feel like shit. Getting shots every couple of hours. Tired beyond belief. Managed to already drop a thermometer
onto the floor as the nurse came back to the room to retrieve it – it broke into lots of little thermometers. And did
I mention being bored? But I am here, resting, and I am listening to the doctor, for a change. Trying to do the patience thing.
Thank God friends smuggled my computer into my hospital room…resting is one thing, but doing nothing resting is
way beyond my scope.
So for those of you who know me (and I mean really know me) you probably have learned over time that patience is not
exactly my middle name. But the past couple of weeks have taught me that patience is not only a virtue, it is the only
way to go sometimes. Did the hospital for two weeks, learned how to careen down the hall to the lift in a wheel-chair
(only did run into one poor soul whilst trying to back the bloody thing up, sorry senor), took all the injections and pills
and capsules and blood tests and MRI’s and other assorted less than fun tests…and now I am out of hospital and
recovering slowly. And here is where the word patience kicks in. Am recovering slowly.
This Guillaine-Barre Syndrome should not be on anyone’s wish list. And whilst many people who are unfortunate to
get it have it far worse than I have had it, it still has not been fun. But I am doing pretty well. So I thought I would
write to everyone again. (Can you just imagine me, without access to a computer? Can’t even fathom the thought myself).
Patience. According to some online dictionary site I found, patience is defined as ‘a good natured tolerance of delay.’
Okay, I can work with that definition I suppose. Well, with the minor exception of the ‘good natured’ bit. I am crap at
demonstrating patience. I get all cranky when things don’t go really well, and being sick is one of those times. And of
course, we all know that a ‘boy cold’ is far worse than just about anything on this planet. So this has been a real bitch.
I really thought (someplace deep in the back of my mind where people are not supposed to go) that I could just whack
this GBS out of me in a couple of days. Oooooh baby, was I wrong. So now I am an active, dues paying member of
the congregation of those who have learned that patience can be a good thing – especially considering the fact that
I suppose I could actually still be in hospital.
So the past two days (have been out for two whole days now – whoopee) I have been doing what the doctor ordered.
I take lots of adorable little pills. Adorable means I take some round white ones that are chocker with anti-GBS
medication; I take some really cute pink oval ones that are laden with vitamins of all sorts of B – numbers; I take
some that are blue and white (they must have something of redeeming value inside of them but for the life of me,
can’t figure out what it is) and of course, the normally prescribed pills that are supposed to counteract the negative
effects of the other pills. (Wouldn’t you think by now that medical science would have some of this sorted out –
why take a pill and then have to take a different pill to offset the negative effects of the first pill?) This is way to
confusing to me, but then again, I am on meds, so I don’t have to understand everything. Or at least that is my
Patience. So part of the therapy – need to get the body working again as the GBS does some mean things to
muscles and joints – is to do a lot of resting, some light stretching and slow walking. Slow is defined as S-L-O-W.
Very slow. So today I walked almost a whole block to a café to sit outside in the sun and have a tea with friends.
And guess what? Friends lead to new friends, who lead to more friends, and then once in a while, you get to
meet someone who has all the answers about any disease known to mankind. And today, I met such a person.
There we all were – me sitting there with my tea, trying to get my back and legs comfortable and this Brazilian
woman comes over and sits down to say hello to the other friends I was with. And then she looks at me as
says ‘Hola.’ I replied with ‘Hola.’ Really, all I responded with was ‘Hola,’ and she says to me, ‘oh, you sound like
an American.‘ I still don’t get how when all I say is ‘Hola’ (how can I mispronounce ‘Hola’?) someone else says
‘oh, you sound like an American.’ Mind-boggling.
Anyway, then Urs (a friend of a friend of a friend) who was there says, ‘James just got out of hospital with
Guillaine-Barre Syndrome.’ (He had a big smile on his face so I took the comment as some sort of a badge
of honour apparently just to get out of hospital at all), and the woman says, ‘what you need is Reiki.’
(So just for clarification; here is what she knows – I must be an American because of the apparently
dysfunctional way I say ‘Hola;’ she has just heard that I was in hospital with the GBS; and she has made a diagnosis.)
What the f**k is Reiki, I begin to think? But being cordial and not wanting to seem overly stupid, I just
responded with the internationally recognised, ‘hmmm.’ (Of course, that probably came out in ‘American’ too).
So after receiving the lecture on why Reiki is the cure for most anything other than mouldy bread, I hobble
home and go online and check it out.
Reiki is a holistic remedy process that involves the laying on of hands (now that sounded pretty good to me,
but with all the meds in my system, I wasn’t sure why) and lots of energy transfer. And the website of the
Reiki international association of believers of the gospel according to Mr. Reiki or whomever came up with
this, even tells where the hands go. So I keep scrolling down through the site looking for the real cure,
but all I keep seeing is two hand silhouettes on someone’s head probably pushing like crazy. Didn’t look
that great to me, so just for the hell of it, I actually decided to read what the website said.
Part of the energy transfer part consists of saying words in an almost prayer-like way to purge the bad shit
from your system. You know, words like, ‘help me use my hands to remove this illness from this poor souls
body’ or something like that. So I am not sure if I can really get around that kind of thing, but my view of
the energy transfer process being improved would be to place the hands on the part of the body where the
problem is, and then saying something like, ‘hey, fuck off you mean bastard syndrome. Get the hell out of
this guys body. Bugger off.’ But apparently, this is not the way the Reiki programme works. And besides
I had the bizarre notion that part of the way that the Brazilian woman was thinking of a cure also involved
some small dolls with pins stuck in them. So being of (semi) sound mind, and relatively well educated
(and one big chicken-shit), I think I will pass on Reiki for now.
Then again, there are other alternative treatments that are available that are, as we say in the ‘west,’
non-traditional. Non-traditional in my vernacular means that the ‘doctor’ has not necessarily spent eons
of time in a proper medical school, but instead just knows how to help people get and stay healthy.
Now have no doubt, I have had great experiences with doctors, especially in the past several years,
but I also have had great experiences with things like acupuncture, which by most medical standards,
When I used to be in Barcelona, I had a serious back issue going on from dragging my carry-on bag
through at least five airports every week. So after talking about it for too long, I heard from another
boater that there was someone in the marina who could sort out back pain. I found out who it was,
made an appointment and went to ‘get better.’ Kirstie and her husband had been sailing for quite a
few years and whilst he was rebuilding their boat, she would make extra money doing massage,
acupressure, and acupuncture.
She looked at me, told me to stand up straight. Asked me if that was what I considered standing straight
was, and then said my posture was pure crap and said we should go right for the needles. Ah, the needles.
Now I never thought I was to far on the squeamish side, but the thought of someone from Sweden sticking
little needles into me wasn’t that great. But, I figured that it couldn’t be too much worse than the back
pain, so I said (is a truly manly voice), ‘needles, yes, of course.’ I had needles in my chest, needles in
my hands, needles in my head, and needless in my legs. Think about this picture – I go to her because
of back pain and now I have needless in my chest, hands, head and legs. I was a bit caught off guard and
said to Kirstie, ‘excuse me; the problem is in my back. Hello? My Back?’ She replied in a lovely Swedish
accent, ‘oh, I’m sorry. I didn’t realise you were the one who was trained in acupuncture.’ Patience.
And then she said, ‘I think I should put some needles under your thumbnail. You won’t mind that will you?
I know that when I do that to my husband he always screams. What do you think?’ Oh, this is terrific. I have
just heard that her husband screams from needles under the thumbnail and she is asking me if I want them?
‘Not a problem’ I responded with a sense of panic running through my system at the speed of light – which, as
you know, is pretty flippin’ fast. And guess what…. I fell asleep. And when I woke up, I felt better. My
posture was still crap, but Kirstie yelled at me enough times about that I worked on that too. Patience.
Today I went back online – okay, so as I have a broadband connection here in the apartment, I never really
am off line - to look for more stuff to learn about GBS. And then my neurologist rang me. I like it when
the doctor actually calls the patient to check up. What a refreshing thing that is. His news was good.
I have several prescriptions that I am taking, one (the little white pills) of which is ‘take four of these little
pills each morning.’ Well the four pills are pretty nasty tasting – even when you just try to avoid them touching
any part of your mouth, they seem to latch onto my tongue with little gripping fingers just waiting to see if
you can swallow enough water to slosh them down. So taking the pills is not exactly the same taste quality
that one would associate with, say, M&M’s Peanuts. (Which as medical science has clearly shown is
God’s gift to those with chocolate adoration syndrome, which I clearly have as well). The good news
from ‘el doctor’ was that on Saturday, he thinks I should go from taking four of those little yucky pills
to only three in the morning. And then on Wednesday, maybe get it down to two each morning. My
assumption is that either, a) he is happy with my progress and is working on weaning me from the harder
medication, b) there is a world-wide shortage of these pills and he wants to save some for a rainy day,
or c) Martha Stewart has sold her stock in that company too. I am betting on assumption A. And then he
told me to have patience. So I am trying to.
Thursday of next week I have an appointment to go back to the doctor for some more blood tests, and
some follow-up tests on my progress. Sounds pretty good to me. And shoot, Thursday is only a week
away. If I have made it this far, this patience thing may be really working.
Part of all the stuff I have been going through involves getting my body to work again. The GBS does
nasty things to muscles and joints due to the way the immune system gets smacked around by the virus,
so this has been a major challenge.
So yesterday, I began physical therapy. Now, some might say that James doing damn near anything
physical is sort of an oxymoron. But, as I am (desperately trying to be) a good patient and listening to
my doctors, they say ‘physical therapy’ and I say ‘when.’ And it has been a while since I did any exercise
Before this the GBS landed in my body and got me, I was doing exercise – actually quite a bit of it. Almost
each morning, I would do between 150 and 200 sit-ups (clearly going for that abs of steel appearance that
would enable me to hold a line-dancing contest on my stomach.) Well, I suppose I should clarify the term
‘sit-ups.’ Sit-ups to me are stomach crunchy things. You know, the kind of stuff that they teach you in
Pilate’s class. Was I doing Pilates? Of course not, but I had seen enough adverts on television where
for one minute, they show some guy who as absolutely zero body fat doing little crunchy things and that
didn’t look that difficult, so I followed suit. An easy regimen – put on some Ronettes or Martha and
the Vandellas, crank up the volume, and a few minutes later was on my way to abs of steel. Unless of
course, it was a really sunny day and my exercise programme then consisted of lying on deck in the
sun. Still would have the Ronettes on, but the physical effort would be a tad diminished.
Years ago, I had decided to take up running as a form of getting in shape. I was living in Milwaukee at the
time, and as a card-carrying lazy bastard, my first step after determining that running would be ‘my thing’
was to go out and obtain the necessary equipment. It was clear to me at the time that running was very serious
stuff, and I knew that there was no way I would be able to achieve my ‘running goals’ without having
appropriate running kit. Appropriate running kit included some really great Nike Air Step shoes (this was a
while ago when they first came out with those cute little air pockets glued into the sole), some great red
shorts (a really committed runner should always have red shorts), a couple of trendy t-shirts to run in
(with highly appropriate running logo crap on them), and the thing that is the most important for any
runner – a new portable music player so I could run with Aretha Franklin whilst she was doing ‘Freeway
of Love’ or ‘Who’s Zoomin’ Who.’ These songs, by the way are almost mandatory for a new runner, if you
are amongst those who still think that running is a fun thing to do. And no, I do not have stock in Atlantic
Records and do not receive commissions on records sold for Ms. Franklin.
So there I was. My first day running and I am very excited about the prospects of being extremely fit. I put
all the new running kit on, got my Aretha tape all set to play ‘Who’s Zoomin’ Who’ first, and tried to touch
my toes once or twice – I never was able to do that before I took up running so it was just put into the
column of ‘physical impossibilities for me’ or ‘birth-defect’ – and headed out down the block. This was
easier than I thought. In no time, I was at the end of the block and between Aretha’s verses, was
speculating on whether I should do five miles or a bit further. My mind was calculating exactly where
five miles would be, where seven miles would be, and even where ten miles would be. After all, it was
my first day and I didn’t want to overdo.
By the end of block two, I was hitting a good stride, feeling pretty damn great. Aretha's sweet voice flowing
through my ears, the sun shinning on me as I was rhythmically bouncing down the street, and a gentle
breeze blowing over the visor of my semi-official Nike running hat (also matching red, of course). By the
end of block three…well, I never actually made it to the end of block three. Something about being totally
out of breathe. Clearly a problem. At first I couldn’t figure it out. I had all the right kit to run in, I had
great Aretha running music. The only thing I neglected to so (I finally figured out) was to try to get into
shape so I would be able to run. And that seemed like way too much work, so I sort of just chucked the
idea of running. Besides, the shoes, whilst they were great, were a pretty tacky red colour that never really
did match the shorts or hat.
So now I have found myself in a ‘mandated by the doctors’ physical therapy programme. And this
will do. When I went to the hospital yesterday afternoon to begin the programme, I found my way down
to the physical therapy area and did something that I learned to do the first time I visited my doctor here.
It is a custom that when you walk into the doctor’s waiting room to say to whomever is already sitting
there, ‘Hola, Buenos Tardes.’ Which means, ‘Hello, Good afternoon.’ It is just such a nice thing to
do. Shows some respect for others, adds a bit of familiarity to it all. Just a nice thing. So yesterday,
I go into the therapy area and look around and see about six other people sitting there. They all
look up as I am being wheeled in, and I say, ‘hola, Buenos tardes.’ In a courteous, respectful way,
of course. And all six people replied with, hola, Buenos tardes.’ Hey, that went pretty well I am thinking.
But within a minute or two, most of them are talking amongst themselves and I am convinced they
are all saying, ‘shit, what a crap accent from that American in the wheel chair.’ Bastards. HOLA.
Like I wrote in my last letter...how many ways can you say something that is pronounced OH-LA.
Well, there is OH-LA, or OH-LA or OH-LA. That’s the entire combination of pronunciations. And
they are all the same. And that is what I said. HO-fucking-LA. HOLA. Buggers.
Okay, so now I am just sitting in the corner in the wheel-chair – God, I hate just sitting in the wheel-chair
anyway – and waiting for my name to be called. Looking around for a mirror to see if I have ‘HAS BAD
ACCENT’ tattooed on my forehead or something. I was thinking that if I were really prickly, I would wait
until they pronounced my name correctly (or at very minimum, the way that my father taught me to
pronounce it), but then I figured I would be sitting there for about 26 years, so I just waited until I heard
anything that sounded close to Rieley. And wait I did, not even sure what this therapy would consist of.
My only real previous experience with physiotherapy had been a few months earlier. I had done something
less than kind to my back. I had for some bizarre reason decided to clean out one of the lockers on
the aft deck of Angelina – why in God’s name I decided to take everything out just to put it back is still
beyond me, but it was the chore for the day. (It must have been a very cloudy day at the marina.)
So I had been pulling all sorts of bits out of the locker when all that remained was the transformer that I
used to convert 220v to 110v to run some or my computer stuff. Now I am not sure if you can get your
head around a transformer that does this, but the best way to describe it is that it is a yellow-moulded
plastic container about 15” x 15” x 15” that weighs approximately 127,586 pounds, or so. Okay, that
might be a tad of an exaggeration, but the thing is bloody heavy and because it was semi-buried in this
locker, it was a bugger to pull out. But I managed to manipulate it out through a space that was
about ½ as big as it should have been; looked at it for about five minutes wondering why I did that, and
then rammed it back in its hole. And then began to notice a slight twinge of pain in my back. Setting
a new world-speed record, within 30 minutes, I was in such pain that the annual output of the company
that makes Advil would not have sufficed. So I hobbled down the road to the next marina where there
was a physiotherapist whom, I was told, had magic hands.
Now not having been to a physiotherapist before, my expectations were mixed, but all I wanted was to
feel better. So in a few minutes, I was called into a small poorly lit room and told by the runner-up in the
Slovenian refrigerator-throwing contest to get on the bed. After about 30 minutes of having my back
manipulated, bent, twisted, rubbed, pulled, and otherwise brutalized, Olga (or whatever her name was)
said that she would now use the 10’s on me. Well, shit, by this time I was thoroughly confused,
having assumed that she only had 10 fingers to begin with. But what she meant was the ‘tens’ machine.
Oh good. The ten’s is a cute little electrical device that she connects up with pads to various parts of
my back and then proceeds to crank up the power until I can feel my muscles twitching in time with almost
any Shania Twain record. And then after a bit, she came back into the room and spun the dials up to
turbo level. My body was damn near bouncing off the table, but I was feeling an exceptional amount of
rhythm. And after about 15 minutes of that, Olga said I could get dressed and go home. Oh, almost
forgot. She told me to take lots of ibuprofen and not try to lift the transformer again. Well thank you very much.
So my expectations of the hospital physical therapy were, as you might imagine, a bit mixed. Suddenly
I sort of snapped out of my dream world of physio-flashbacks when I heard a nurse saying, ‘Senor Reeeeeely?’
I was actually thinking of helping her learn how to pronounce my name but then thought fuck-it – just let’s
get on with this. ‘Oh yeah, that’s me, Senor Reeeeely.’ I wheel myself into a small office where my new
doctor was waiting – it does seem that about every other day I get another doctor. What a special person
I must be – or, what great insurance I must have. (Insurance would be the appropriate answer to this question
I am sure)
This doctor, who didn’t speak any English (which is clearly good for my Spanish utilisation and improvement)
asks me to get out of the wheel chair and get onto the examination bed. Oh shit. I am fully expecting that
another version of Olga will suddenly reappear, but no. Must be my lucky day. All the doctor wanted to
do was to test how much strength I had in my arms and legs. Okay, well I can get into this.
Just a simple set of tests. She has me lift my right arm vertically, then puts her hand against mind and
tells me to push. Well, although this doctor looked like she went about 50 kilos soaking wet, I couldn’t
move her arm if a strong wind blew in the room. Okay, how about the left arm? Hmmm, what a powerhouse
she is probably thinking through her yawn. My legs were a bit better, but it was pretty obvious that the
GBS had caused me to lose so much of the incredible muscle tone that I once had. (Yeah, I know, more
exaggeration, but writing this in this way makes me feel better so bugger off). More questions about
the illness, questions about what exercise I normally do (let’s see, does eating M&M’s count as exercise?
They should…. it’s not easy to get all those little chocolate peanuts out of those bags, is it?) Then she
proceeds to tell me how lucky I am because I am not paralyzed, was not paralyzed, and didn’t die (thank
you very much for the reminders, but I do realise how lucky I am). And she then discussed the physical
therapy programme that she wants me on.
Initially, it will be for twenty straight days. Oh, I get weekends off. What a treat that will be. Everyday,
physical therapy. Okay, I obviously need it, but I was taken a bit back by the plan. But as you all know,
my middle name is now patience, so I am good with it. And then I asked her to describe the actual therapy
regimen. It became apparent that it would be easier for her to show me, so a nurse comes and wheels me
out into this very large room. A room that has all sorts of bits and bobs attached to walls and tables. A
room that has large mirrors on the wall so you can see how you are progressing. A room that is full of
chrome stuff that doesn’t look like that much fun. A room that looked at first glance like something that
Dr. Mengele had in Germany during the war. And the highlight was over in one corner where there was
a wire-cage room with a bed smack in the middle of it and hanging from all the wire cage walls are
assorted pulleys, leather straps, and other nasty looking stuff. I am assuming that this is the Hannibal
Letcher memorial transformation specialty centre. Can’t wait to get into there. And then they send me
home, as I can’t really begin the therapy sessions until Friday anyway. So that’s okay. At least things
are moving forward. But at 1100 each weekday, ooh baby, ooh baby. Look out.
Oh, almost forgot. This morning I had an appointment with my neurologist – just a check-in to monitor
blood-flow and see how I was doing. So I get to his office, check in with the nurses to let them know I
am there and then am told to go sit in the waiting room. I walk in, look around, and see about five
other people sitting there reading magazines and otherwise killing time. And I say, ‘Hola, Buenos Dias.’
And they all looked up and said, ‘Hola, Buenos Dias’ and then go back to their magazines, like I am one
of them. How cool is that?
Things are looking up.
So I have been doing physical therapy each morning since I wrote last. And it is pretty brutal. Not
always brutal physically, but clearly brutal mentally. The first real day of therapy, Andreas (my therapist
at hospital) went over my programme – ‘we will work on the total body, but very slowly.’ So I said, ‘sure,
not a problem,’ after all, before I was hit with this nasty bastard disease, I was in semi-good shape…
for a 59 year old male who was living onboard a boat. Andreas walks me over – okay, so I hobble
over – to the first ‘station’ of what loomed to be potentially easy exercises. And then he tells me that
all I have to do is grab a hold of this rubber thing that looks like a bicycle inner-tube tied to a wall, and
then pull it five times. ‘Cinco?’ I ask, just trying to be a good patient and not wanting to do anything
wrong. ‘Si,’ he replies, and then goes on in Spanish to tell me that I should do this very easy. Okay.
My right arm grabs the trendy orange (no, I don’t think bicycle inner-tubes are orange in Spain – this
most certainly is some very expensive physical therapy device…but a nice inner-tube would have worked
fine I was thinking) and begin to pull. Shit. I barely was able to pull it all the way five times. This is not
good, and I am beginning to take all this therapy stuff a bit more seriously. Then Andreas tells me to now
turn around and pull it the other way with the same arm. Bastard – this is even harder, and I am
marginally able to begin the fifth pull. Thank you Andreas. Ooops, a bit too early…he then tells me to
now use the other arm. And that goes about the same. One weak person I am thinking, but after all, I
am in physical therapy for a reason, so I do the same exercise with my left-arm and then almost fall into
a chair, totally knackered. ‘Que bueno James,’ Andreas mutters with a huge smile on his face. But
before I can bask in the delight of ‘doing good,’ it is time for lifting weights. And then time to try (and try
is the operative word here) some semi-deep knee bends. Almost was able to get to two on that one.
How good am I?
Andreas then hustles me over to a bed-like thing and tells me to lie down. This bit of fun is something
that I never really did catch onto the name of, but the essence of it is that I lay down on my back,
then pull my legs up at my thighs, then bend at my knees so my calves are parallel with the table
(and the rest of me). Then Andreas tells me to push with my hands on my knees and breath in and
out – deep breaths he says, or so I think he says. Buggers, I can’t even lift my legs up without using
my arms to lift them. Shit. Can’t do that exercise. This is not doing good for my ego, or my emotions.
So what does he have for the big finish of the day? Oh, another simple weight-lifting one he tells me.
Still lying on my back, he produces from seemingly nowhere, a long wooden stick to which he attached
a lead weight. And Andreas tells me to push this weighted thing into the air five times – by now I
am beginning to think that there must be something magical about the number five…like it is either
Andreas' favourite number, or this is the slow start for the semi-crippled, like me. I try my best,
but can barely manage the push the weight to arm’s length the five times. I am totally exhausted.
Totally. So whilst laying there trying to catch my breath, I casually ask how heavy the weight was.
Andréas tells me, ‘un kilo.’ Now although my Spanish is not that great, it didn’t take a simultaneous
translator at the U.N. to understand what he said. I was struggling to lift a bit of lead that only
weighs 2.2 pounds. Shit, I am buggered and I know it. And this knowledge is devastating beyond
belief. I finally realise that this will be truly a long recovery process – yes, I know, that is what the
doctors all told me, but you know, someplace deep in my mind I am sure I just assumed really
long meant a few weeks. My body was wracked with GBS, and it will take a major effort on my part
to get rid of it. The meds are great, but I will have to really work to get anywhere close to where
I was physically. And remember, me? Mr. I-need-to-work-on-having-patience? Shit. So I drag
my body back to the office and order a taxi to go home…and within minutes of arriving home, fall asleep.
By day four, things are looking up. The ‘rule’ of five is pretty much out the window (even though
the physical therapy room is in the basement of the hospital and has no windows. As a matter of
fact, to get to it, I have to walk down about 40 steps. What is that all about? To get to physical therapy,
they make you walk down 40 steps? Shit, there must be a lift someplace around the building that gets
you there, but for the life of me, I can’t find it; and when I ask someone where I might find it, they all
smile at me and point to the stairs. At least going down is easier than going up). By the end of day
four, I am doing 10, yes, count’em, TEN of each of the painful, but helpful exercises. Whoooeee baby.
I am seeing improvement, and I like it. Of course, by the end of each session, I am ready for about
five days of sleep, but I am getting better and seeing the improvement.
Day 10 in physical therapy, and things are even better now. Okay, ‘better’ is sort of a relative term
when talking about physical therapy for GBS. I do have some days in which I can see real differences
in my abilities, but there are other days where I am just not too thrilled with the time it is taking. Yes, I
can do far more ‘repetitions’ of all the exercises, and I am doing about the same amount at home during
the rest of the day, but it is the ‘not knowing’ how long I will have to do all this before I am back in
shape that just drives me mad. Then I think back to where I was less than two months ago – barely
able to stand or walk, in hospital with the knowledge that I could become paralysed, barely able to
lift a one-kilo weight. And then I think of what all my doctors have told me – patience. Whew, this
patience thing is far more brutal than the physical therapy!
click here to return to Chapter 43 of Letters from the Village