Saturday, August 30, 2014

Some Thoughts

My first attack of MS, in 2004, affected, mainly, my cognitive abilities, my sense of awareness. The second relapse, in 2007, affected sensation in my feet and legs, my sense of balance, my cognition and my memory. This third attack has affected my hearing, my eyesight and (again) my cognition. Wonder where the third event will strike. Can't wait to see.

This is just something I posted on Facebook, looking back at how each relapse has manifested itself in my body. Even though the none of the effects are pleasant, the disease always seems somehow interesting to me - to think that something can be 'touched' somewhere inside ones nervous system and cause a specific result on the outside. It's kind of like that old kid's game, Operation. Remember that? On a game board, you operated on this poor two dimensional guy, seeking to remove various parts of him with tiny tongs. If you hit the edges of an operating site, a buzzer went off and, as I recall, his nose lit up.

In this case, some malicious, misguided cell, bit off an edge of whatever nerve center controls my hearing. My nose didn't light up, but my ears certainly are ringing. It nicked off a few bits of my eyesight, too. I had just recently gotten new glasses, and was feeling enthused about being able to see again -- well, sort of  able -- when these nasty little munchers chewed the myelin off some of the nerves that regulate my eyesight.

I have said before that these things -- things that are suddenly damaged, made imperfect -- continually remind me how amazingly made we have been. Every inner particle is working together to actuate, to realize, to animate the human being according a plan we ourselves did not make and cannot truly understand. And another amazing thing about this machine is that, when it is broken, it cannot be repaired. I'm not talking about a broken leg, of course, or a malfunctioning heart valve. I'm talking about the essential pathways that underlie every gross part, the electricity that runs through the wires, the 'lightning that comes from the east and is visible even in the west'. I am reminded again of psalm of David -- which I have quoted before, and may as well quote again.

I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well. 

 My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.

(Ps 139: 14-16, NKJV)

Wednesday, August 27, 2014

Stormy Weather

Amazing, astounding, nauseating storm in my head last night - ringing, hissing, sighing, shrieking - the clamor of three dozen demons spilling from a wild party in hell. What is it within a brain that can hear these sounds, and not only hear, but suffer, as if from a physical assault?

Friday, August 22, 2014

Tonight's Appointment

So, I go to the Senior neurologist tonight. I take my MRI scans with me, along with the radiologist's report. We discuss my previous visits with his partner, the meds she prescribed, and so on, and he says, "Do you have MS?" Sigh.

Well, welcome to Indonesia, folks. Can't blame 'em, really. They've barely so much as heard of MS, much less treated it. Ya, we don't have that here, the doctor said. Ya, well you do now, I answered.

But he was an amiable sort - which actually goes a long ways where doctors are concerned. I once had a doctor in America who "fired me". Yes, fired me, because I refused to continue with interferon injections that were making me deathly sick on a weekly basis.

Once again, we had to communicate in Indonesian. At least he was honest enough to say straight out that he couldn't speak English. Another plus, there - honesty. But we did quite well. Which is either because my mind was clearer tonight than it had been in the morning, or because I just can't understand what female doctors are saying, whatever language they use.

So, he gave me some various potions for my fatigue (such a hopelessly inadequate term, that), and we shall see what happens.

Stay tuned.

Wednesday, August 20, 2014


How can anyone, having any semblance of a stable mind, manage the unconscionable temerity to defend the beheading of an innocent journalist, the mass murder of captive soldiers and citizens, the kidnapping and rape of women, the burial of infants while still alive, with a complaint about 'drone attacks'? What in God's holy name can they possibly be thinking? Well ... they really can't be thinking at all, can they.

Friday, August 15, 2014


Lost an old friend on Friday last. My step-daughter's father. A Prince among men. The kind of person who was everyone's friend; a spiritual man, a sensitive listener and one of the best joke-tellers I've ever known. Reginald Rutherford - God's speed, my friend. See you at the King's table before we know it


I used to type well over 100 words a minute. Now, my fingers have become noodles. They are worms, blindly roaming about the keypad. Not likely to be playing Chopin anytime soon, either.

Thursday, August 14, 2014


So anyway - there's this new bread and pastry place nearby. Bread Time or Bread Place or something like that. Bread is a big deal here in Indonesia. It's considered a 'western' food, and so a great treat. It's a cozy place if one goes early enough in the morning - otherwise, it becomes way too crowded. But in any case, you can get yourself a little cake or whatever, a latte for Rp. 11000 (unheard of), and settle into a chair with a book, or just watch the people come and go. Lots of school kids show up in their identical uniforms, gabbing away in the usual gobbledygook, which is not, for any practical purpose, Indonesian, but their own shared invention - a mystery to the westerner, no matter how much he has read or studied. You pick up bits and pieces, each as mysterious as a newly spilled jigsaw puzzle. And of course everyone takes notice of the bule - quick glances, smiles, whispers.  Oh! That's it. It's called "Bread Life".

Yeah, Don't Bother

Well, some of you out there are going to be getting sick of these continual MS entries. But hey, it intrudes, it speaks, it insists. And, after all, the original inception of this blog had to do with MS anyway.

So, what's the pleasant news for today. My arms and legs are extremely weak. My fingers don't work - a disastrous circumstance for a writer. I'm practically hunting and pecking these days. Takes me four hours to do two hours of work.

One tends to think that after he has surrendered and gone to the doctor, he will simply get some medicine and that will be that. All well again.

Not so.

I don't really remember how long it took me to recover from my attack back in 2007. I do remember, however, now that I think of it, that I was still having difficulties in February 2010. Not encouraging. I remember my old friend, Vick, giving me his arm to help me up and down stairs. So, yeah.

No magic meds.

Just a long road.

Wednesday, August 13, 2014

Can't Wait

Actually looking forward to returning to the doctor on Friday. Just like old times. Lots of questions. Seeking answers. I guess I had forgotten how long it takes to recover from these relapses. I mean, I'm ready right now. But the truth is, I feel lousy. I feel very weak now in my arms and legs. Just limp. Coordination is fucked. Takes me hours to type what used to take minutes. Every other letter is wrong. Fingers poking about the keyboard like mindless worms. And in the meantime, I have work to do.

Well, the good news is, though, that I'm enjoying my wife's 'sunshine regime' in the chaise lounge in our backyard. Just like sticking yourself into an oven. Lie there as long as I can bear it, then jump into a cold shower. If I didn't have things I was supposed to be doing, it wouldn't be so bad.

Tuesday, August 12, 2014

What Illness Reveals

I have always thought that what is most miraculous in the healthy human organism is most distinctly revealed in the aberrations of illness.

"I am fearfully and wonderfully made," David said;
"your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."

Quiet Time

When you are ill and laid up, you see the things that are always there, those things that you have not seen before with precision or even interest. They are the passing things, of no account. Clouds in their courses, the eye of the sun, now blinded, now piercing. You see the leaves on the small tree that was no more than a stick 6 months ago, now blooming, stretching prayerful palms to the nearest... heaven, breathing and breathed. A dragon fly sits on your knee, not knowing any better, and for once he is right. He seems to mean something. Everything, the smallest thing, seems to mean something. The mind of the breeze crosses arms on your chest, and then surrenders again to the incomparable sun, as much a component of your skin as of the heavens.

Sunday, August 10, 2014

The Latest Curative Measures

My sweet, well-intentioned wife has decided that the way to cure my MS symptoms is for me to get LOTS of sun. Bali sun, that is. A cut above every other kind of sun. To this end, she bought me a chaise lounge which she has positioned in the backyard, directly under the most intense rays, and I am to lie in this chaise lounge several times a day, as long as humanly able. I may occasionally evacuate the chair for a quick cold shower at reasonable intervals. The demyelinating processes of a defunct autoimmune system  are apparently blasted into submission by violent doses of searing tropical sunlight. Upon completing the regimen for the day, I am to drink spinach juice and aloe vera. Well, who knows? If it don't kill me, it may cure me.

Saturday, August 9, 2014

Long Journey

Cabin fever. Climbing walls. Can't take it anymore - disorienting meds or no - I head out on the motorbike to Sanur, Problem is, the thing keeps going sideways. Don't know how many times I ended up driving in the ditch. Oh well, just a bule who don't know how to ride a bike properly. Finally made it to JCO. Never tasted a better coffee. Enjoyed it immensely while reading two newspapers. And then back home through the same roadside ditches. Made it! Don't think I'll try that again. Seven more days of methylprednisolone, five more of clonazepam.

Friday, August 8, 2014

Med Regimen

Wow, these meds are spacing me out. Long time since I've taken strong medications. Methylprednisolone and clonazepam seems to be the worst. Dizzy, disoriented, exhausted, feverish. Well, four more days of this, and then we'll see what happens.

It has been very kind of so many people here to wish me well and to show concern, some of whom I barely know. On the other hand, from my own step children from my second marriage: Nada. Not a solitary word. And I know they've seen this on Facebook. Ah well, as I've said, the best way to find out who your friends are, or who really cares in the least, is to have a sudden health problem. The silence is not only deafening, but, hopefully, instructive for the future.

One never wants to just face these things. One holds on to dear memories, of the years spent caring and enabling and sympathizing and teaching and, yes, paying their way through their young lives and beyond. And for what? One doesn't like the answer, and yet there it is - a slap in the face.

And so it makes me feel lonely -- and not only as if I have failed, but that they have failed as well.

Wednesday, August 6, 2014

MS Update

Well, I found out this morning that there are multiple new active lesions on MRI scan. No wonder I ain't been feelin so good. I suspect the doctor thinks I'm a bit weird because I can't remember anything -- when was my last MRI, what medications did I take, how could I have lost my medical records, and so on. Well duh. I have MS. That's why I can't remember anything. Or rather, that's why I remember things about 2 hours later. Or 2 days later.

In any case, they've put me on corticosteroids, some kind of sort-of strong analgesic (narcotics not allowed in Indonesia), clonazepam for whatever reason, and Ginkgo Biloba. Yup.

Will return to the doc in 10 days or so.

Monday, August 4, 2014


Once again, internet is out at home. Came down to Starbucks to work, but, lo and behold, internet is out here too. So that’s a motorbike trip and 31000 rupiah for nothing.

Btw, Bali traffic rule #2 for people who don’t know what they’re doing: Motorbikes should stay in the proper lane, The opposite lane is for oncoming traffic. If you pile up in the oncoming lane, oncoming traffic will be unable to proceed, as will traffic in the proper lane. This is what we call a “traffic jam” and should be avoided for the benefit of all motorists.

Went to the hospital this morning to try to get some medications for my “new” MS symptoms, and the doctor insisted that I get an MRI first. Damn! I hate MRI’s. Nonetheless, I’m scheduled for one tomorrow morning. This ought to be interesting. I didn’t know they even had MRI beds here.

What I rather suddenly ended up with is ringing in the ears, pounding headaches and heat intolerance. That latter is a very common symptom, which I, lucky until now, had never experienced. Now, I can attest first hand that it’s a bummer.

Interestingly, I only recently learned that many of the symptoms that we associate with MS are really symptoms of a separate condition known as “dysautonomia”. This symptoms include cognitive problems, fatigue and, my new favorite, inability to “thermoregulate”, aka heat intolerance.

I thought I could just waltz in and ask for ‘some pills’; however, since I don’t have my old MRI exams (somehow lost in the last four years), and since I have no medical documentation stating that I even have MS, the doctor, understandably, insisted on getting an MRI. Aside from that, as she points out, if the ringing in the ears is attributable to MS, lesions will appear in specific locales.

So, more later on that.