Vitamin B12 and Brain Damage

I found it hard to understand how things as seemingly far apart on the
importance spectrum as vitamin B12 deficiency and brain damage could be
related.

To me, Vitamin B12 Deficiency sounded innocuous, while Brain Damage
sounded horrifying.

So, I'm not surprised that people are incredulous when I tell them about the
risks of low B12, and that in fact vitamin B12 deficiency can cause brain
damage.

Plus, at first glance it probably doesn't seem like I have brain damage. So,
maybe the place to start is a description of my experience with brain damage.

In the beginning, I had no idea I had brain damage.

When I found myself confused, wanting to go to the grocery, post office and
Kinko's, but unable to keep the three things in mind, my immediate reaction
was intense anxiety.

If I was already driving when I experienced my failing memory, anxiety
washed over me and a low level trembling set in, making me feel like
florescent light looks. The harder it was to breath or to hear above the
pounding of my heart, and the clammier my palms got, the harder it was to
remember where I was going or how to get there (this is in a small city,
where I have lived for about 30 years).

Because I am describing this now, it may seem to you that I must have seen
it then, as I see it now. But no, and that's a part of the problem.

There was no longer an overview, there were only separate events; if I had
two events or things in mind, I couldn't be sure which of them had come
first. For example, if I was in the parking lot of the grocery, so that
"grocery" was effectively in my mind because I could see it, and "post office"
came to mind, I didn't know whether I'd been to the post office, was going to
the post office, or if it was simply a random thought. It was only when I saw
several letters on the car seat, or a sheet of stamps, that I knew I did or didn't
have to go to the post office.

As I relate this, it may seem as if the letters/stamps were a reminder. But
that's not really it. They didn't bring to mind something I'd forgotten, because
in fact I'd completely forgotten: There was nothing left in my mind of what
I'd planned or done. What the letters/stamps did, was show me something I
needed to do, or something I had done. Before this, when my memory
worked, it would show me what I had done or needed to do. I could think
back over things, or forward, and my mind would display whole series of
events. But after I had been low on B12, that function of my mind faded.

I am unclear whether in time, if I had not had vitamin B12 replacement
therapy, whether I would have continued to remember what stamps "mean."
But I expect that it naturally (or unnaturally) follows that they would have
ceased to be connected in my mind to the postal system; rather, they would
have become nothing more than pictures, which if turned over, would appear
to be stickers because of the shiny stuff on their backs -- if I remembered
that shiny stuff might be sticky when moistened.

In this same vein, I didn't immediately recognize my "anxiety" as such.
Rather, when I felt myself trembling or having difficulty breathing, I focused
on my breathing because that's what I was experiencing as a problem. I took
deep breaths, making the movement of my exaggerated breathing replace the
trembling. With each breath I exhaled audibly, and found the process and
sound reassuring.

I am sure about this because my friend Linda Van Camp had been teaching
me breathing techniques before IRS put me out of business and I became
isolated.

When IRS enforced against me for 1984, a year I had paid, which I told IRS
and I sent them proof, I knew the stress was affecting me, but I had no idea
to what degree.

The shock of the undeserved enforcement was complicated by the inability
to sleep that it caused. (What I'm going to tell you is a bit risky, but I'm going
to tell you because if you identify with what I went through, if you can see
how it might be similar to something you are dealing with from a boss,
spouse, parent or someone else, then maybe you can take steps to avoid
serious damage to your nerves, cognition, and life.)

I firmly believe that my sleep problem was caused by IRS constantly saying
they would take my home. I believed IRS, and it terrified me. The thing that
made it the most unsettling, the most nightmarish was that I was sure they
knew that they were causing sleep deprivation and that in the most perverse
way they liked having and using that power.

What's important about that is not just that the government could effectively
use a torture technique to force me (or anyone) to do what it wanted, it's that
in recognizing the malevolence I lost my ability to feel I could protect myself.
It was as if I was a captive and completely at their mercy.

As time went on and I saw repeatedly that they had no mercy the stress
increased to nearly unbearable proportions.

At the same time, and a part of the complexity of the problem and of the
stress, was that people tended to think that I was only saying I had paid my
1984 taxes. I know this because people I knew to be truly sympathetic would
say, "Why don't you just let them put you in prison if you don't have the
money to pay? Then in a year or so it would be over."

An important part of this is that in addition to having something shocking
happen (being levied after I'd paid my taxes) my sense of trust and security
was replaced by a feeling of alarm as if I had to quickly protect myself; sleep
became all but impossible. When I tried to feel better by telling someone,
they often took the view that I must be mistaken, or exaggerating, because
the government would not do something like that; or, they told me a story of
abuse that they had experienced or knew of and they would say, "There's
nothing you can do."

So, in the beginning when I naively thought that the stress was the
undeserved series of levies on my bank account, losing my business, and the
threats to take my home, those things that stood out, I didn't see how
stressful it was to be unable to solve the problem or even to make the
problem understandable to someone else, and, I didn't appreciate how deep
that stress went, the stress of the "hopelessness" in the situation.

It wasn't just that I had paid and IRS maintained I had not, it was that I could
not get the truth to be acknowledged. I felt that if the truth, the facts, were
acknowledged by the government that everything would be all right, that the
abuse would stop and I would once again feel good.

But I also think that if what was happening had not mirrored something deep
in my past that it might not have mattered so much, perhaps I could have
behaved as if I were to blame, knowing within myself that I was not, paid
how ever many times I was asked, and slept soundly. But...

As Shakespeare (or Bacon) wrote, "Sleep knits up the raveled sleave of
care." I used to think the "sleave" was the arm of a garment, but it's a skein
of thread when it's spelled this way and really that's a perfect image: events
of our lives are strung together on the thread of cause and effect, "If I hadn't
moved to Monterey, I wouldn't have met John, and if I hadn't met John I
wouldn't have moved to London." Similarly there are the events of the day,
"If there hadn't been a rush on this project I wouldn't have stayed late at
work, and if I hadn't stayed late I wouldn't have missed that important call."

It's all well and good when things are chugging along in a relatively normal
way, but when something goes so monumentally wrong that it defies being
happily threaded together with other things, then there is little that can be knit
and sleep is hard come by. At least that's how it was for me.

One of the things I've noticed now that I'm living with the damage is that
once my mind fills up, which sometimes doesn't take very long, my
efficiency is greatly diminished. What seems to happen is that once my mind
is "full" things no longer stay clearly defined, it's as if they top their borders
and become intermixed.

If you have ever tried water paints, you have some idea of how the most
beautiful colors and effects can be created by just the right mixing, but how
all too easily too much of something muddies it up.

While you can throw away a muddy painting, it's not so easy with your mind.

What I found, is that once things had become mixed up in my mind and I
was confused, whether I realized it or not, I began to make exponentially
more errors, the worst part of which was that I did not recognize many of
them as errors because they were perfectly in keeping with my mind.

But, because a sense of anxiety tends to accompany confusion, I would
know I had to stop whatever it was I was doing. And, most often I could not
go back to the task or do any other task until after I had slept. Once I had
slept, it was as if my mind was fresh and I could use it again, being careful to
fill it economically so as to be able to use it for longer.

Just a quick example of what I mean: before I had this brain damage, I could
look at books that were in no particular order on a book shelf, and I could
know how to rearrange them into alphabetical order with about the same ease
as knowing where the last piece in a jigsaw puzzle goes. My mind showed
me things in a very clear way.

But now, it's as if I have to take each book and physically compare its title,
letter by letter, to the alphabet: let's see, this looks like this letter, and this
letter appears to come before... What I want to show you, is that so much of
the framework we rely on disappears when we have brain damage. The
sense of continuity that we take for granted in the course of our days,
disappears: when I leave the kitchen I can't remember where I was; if I put
down a book, I can't remember what I was doing, much less the people I'd
been reading about.

When I talk about filling my mind "economically" I mean that when I can
make things be sequential they seem to take less space in my mind and be
easier to remember.

Knowing this, I approach things in a much more methodical way than I used
to, and I understand why people with mental disabilities often get upset when
things are changed or moved from the way that had been familiar.

What I now understand is that mental disability is so disorienting, just to have
brain damage, that to have things moved around on top of that removes the
last vestiges of familiarity, creating the feeling of being absolutely lost.

When someone in my life berates me, whether it's my brother, the
government, or someone on a forum, I know I must counteract the poison
immediately and unremittingly in order to hold on to my vision of myself as a
good person, otherwise I begin to get lost.

For me the stress became overwhelming gradually as I lost track of my path
in the forest of accusations that I was not a good person, that my attempts to
be a good person were a sham, that I didn't do things right, and that I could
never conceal how bad I really was.

I had faced this when I was in grade school by writing that I didn't know if I
was a caterpillar, which I saw as good because it transformed into something
with wings that was beautiful, or a worm, which I saw as bad because it
wasn't very beautiful and it lived in the ground. I wanted to be a beautiful
creature with wings. I feared I was the brown thing without a backbone.

My guess is that throughout my life, as long as I was sleeping regularly, I was
knitting it all up every night and the tangled opposites didn't get out of hand.

But, when IRS put me out of business I lost the way I had used to be good,
to do good work, to be a top producer, to earn praise. I suspect that if I had
not had such a deep dichotomy at the center of my psyche that I would not
have been so driven to be the top producer, to establish my good reputation.

The rift between what I wanted to believe of myself, and what I had been
told I really was from a very early age by my mother, spurred me to
accomplish and that was good. But when I couldn't accomplish within the
business I had built, because it was suddenly gone, the counterbalance I
depended on to keep my life in balance was gone, too. It was as if my life
were an elevator that went plummeting when the weight it needed for
stability was suddenly detached.

I remember the elevator at Heal's, a fine department store in London,
because it had it's counterweight showing. I remember how massive the thick
slab of metal was, and how it made things clear. Every time I looked at it I
had a sort of, "Oh, so that's it!" sort of moment. Even thinking about it now,
I feel a kind of relief, as if there's a solid reason for everything, something
very solid that keeps things working properly and balanced. I don't think I
ever went to Heal's without going to the elevator to look at the elevator and its
counterweight. I went to look at it even when I wasn't going upstairs.

The reason I'm going on about this, about the stress, the up and down
mechanism of my thinking and the loss of stability, is that even though it was
serious when it was happening and I was aware of it, I did not appreciate the
scope.

I tried to do something good with the situation I was in by writing letters
focused on reforming IRS; I wrote many of them when I couldn't sleep. In
fact, I didn't resume sleeping until after Don Boroughs, a senior editor from
U.S. News & World Report, called saying that he'd been given my name by
the National Taxpayers' Union. He asked me what had happened and
listened for over an hour as I told him. He asked me to fax him the
supporting documents, which I did from Kinko's. I remember being so afraid
that when he looked at the documents they'd be different than how I saw
them. But they weren't. When he called again he said, yes, he would use my
experiences in the piece he was working on.

That was such a relief. He hadn't placed blame on me by telling me that I
should have paid IRS. He had looked at the documents and seen pretty much
what I saw, rather than what IRS saw, and others imagined.

I began to sleep again. So, although he didn't solve my IRS problem, he did
help me "knit the raveled sleave" by listening to me.

Why didn't I get better, then?

I did, but it wasn't just the IRS, or just the IRS and my psyche; it was
foreclosures, not being able to use my furnace for heat, not having money to
buy vitamins and good groceries, having my gas disconnected, and all of this
together using up my stores of vitamin B12, without me knowing it.

If I had known then that the stress was depleting my vitamin B12, and that
the less B12 I had in my body, the less well I could sleep, and that the less
well I could sleep, the more my bones would hurt, and that all of it, taken
together, was impairing my memory, I could have taken B12 and stayed a lot
stronger and healthier, body and mind.

That said, back to getting lost on my way to the grocery store: Even though
my memory was impaired, my intense reaction to getting lost stuck in my
mind and I became apprehensive when I needed to go out. Plus, if I needed
to go three places and I couldn't remember them all at once, it scared me.

So it was that I began to recognize my anxiety.

At home it was easier for me to identify my anxiety than when I was driving,
because when I was driving I saw traffic as the stress culprit. Whether this is
generally true or not, I don't know, but for me there was a strong desire to
have the problem be outside myself, like bad drivers or heavy traffic, and
surprisingly or not, a tremendous temptation in this direction remains.

At home, where there was less going on and I was more relaxed, I was able
to see my anxiety. But just as I'd concentrated on my breathing when I was
driving, as the be all and end all, I now saw confusion/anxiety as a totality
and "The answer" to "What is my problem?" instead of questioning whether
confusion and anxiety were signs of something wrong physically, deep within
me.

Given my view of my situation, I found three ways to cope:

1.) I labeled my confusion natural, "it's a

natural

part of growing old,"

2.) I limited tasks so that they weren't confusing: for instance, instead

rying to plan

to go out and get groceries, stamps, and copies, I

would focus on

what I absolutely needed and only on that one task; and

3.) I made a point of feeling good about what I accomplished -- which

meant

no longer telling myself how much I'd failed to do; instead I told

myself, "It's

really good to do one thing in a day. One thing a day is

Great!!" In a while,

as I kept doing one thing a day, I found I'd done

quite a few things -- I

praised myself a lot

and that kept safe on a path

far from the forest of accusations

One of the ways I know that I in fact did the above things, is that I continued
to do them. In fact, it has been hard to unlearn these coping techniques.

For instance, now that I have more B12 in my system it would be good to
regain the ability to compare and contrast, which requires having more than
one thing in mind.

However, having trained myself to compensate for my disability by focusing
on one thing, I have also trained myself to take a bit of a tunnel vision view.
This focused approach is great (not that I can always achieve it) when I need
to concentrate on one thing, as for instance when I need to weed out
extraneous material or a confusing element like stress.

It's weakness is that there are times when there is not a single thing. A good
example is a series. For instance, last year I bought an oil filled radiator with
a programmable LED thermostatic control, which sounded great. But when I
tried to use it, being eager for warmth on a cold day, I could not take the
information from the three boxes of specific directions and translate them
into a sequence of actions which would turn it on.

When I couldn't remember the sequence, I tried to go about it part by part,
but I kept forgetting which part I was on and pushing the button which threw
it back to the beginning. Eventually I was so cold and desperately distressed
that I had to admit defeat. The only good thing was that it was obvious to the
return clerk that I could not handle it, and she immediately okay'd me getting
the simpler model. That was in 2003.

One of the problems with trying to write historically about my brain damage,
is that there are large periods of time I don't remember.

This is not to say that I don't have any memories from those periods.

The type of memories I have retained is often less similar to visual
recognition, that is, less similar to being able to tell from a few seconds of a
movie whether or not you've seen it, than it is to a familiar feeling.

Now I can watch a movie as if for the first time, till something at the end
strikes me and I realize I've seen it before. This is not the same as suddenly
remembering; rather, it's a feeling at the end of the film that's familiar -- "Oh,
I've been here before."

In my experience, feelings are quite sturdy things.

Not only do feelings endure long after characters and plot have dissolved
from mind, they can persist in an unsettling way in relation to a large array of
daily events that are otherwise forgotten.

For me, feeling and thinking share a teeter-toter: I can feel overjoyed at the
sight of a completely, perfectly beautiful chrysanthemum, or I can think
about the soil, water and sunlight that went into growing it. If feeling is up,
then my thinking is down, and vice versa.

Perhaps the name "see-saw" gives a clearer picture, since it suggests how one
minute we see something, and the next minute, we saw it.

In terms of feeling and thinking, when I feel dragged down by depression,
my thinking is often "up in the air ," weightless and useless. For instance, I
have noticed repeatedly and consistently that when I am depressed, I can
seldom think of anything good.

I have a growing suspicion that the fact is not that I cannot think of anything
good, but rather that I simply cannot think, not in a flexible, agile way.

When something happens and I recognize it as something "bad," it may seem
as if I thought something bad had happened, when in reality I thought
nothing but only saw. Take a bright orange utility Disconnect Notice on my
door, for example: I see it and immediately feel fear, apprehension -- even
dread. These feelings may overwhelm me for hours or a day.

If I didn't have brain damage, my thinking would kick in with several
approaches I might take, like calling to see if I can make a partial payment, if
they have a copy of my medical certificate, if I can get an extension, etc.

But, I do have brain damage, so rather than thoughts occurring to me, my
dark feelings combine into the heaviest thing around, gaining the weight of a
steely, so to speak.

Remember steelies, the big ball bearings we used as kids to knock the
opposition out of the ring in games of marbles? Steelies were so fearsome,
because their weight alone could determine the course of a game, that they
could be declared, "No fair."

In my mind, the only thing being knocked out is my thoughts, and with them
gone, the Steely circles round and round, roulette-wise, only with no stops.

Could it be that someone else was thinking along these lines when the phrase,
"losing their marbles" was coined?

Under these see-saw circumstances, when I "think" about my situation,
nothing comes to mind, only that's not what I perceive to be happening. I
have the impression, vastly wrong though it is, that my mind has assessed the
situation and arrived at an image of the present moment as the most
important to consider, if not the most seminal moment in every respect. This
impression adds further spin to the Steely depression.

I may try to think of better times, and failing to bring any to mind, think that
there were none.

So, it is the failure of my mind to know where it is in my experiences, just as
it had failed to know where I was in Santa Fe, that is the problem.

If my thinking were functioning, I would "see" that in the sequence of events
in my life, a Disconnect Notice is ultimately not that dire. In fact, of the times
I have been home to receive them, my utilities have not been disconnected.
So, if I reflect on actual past events, Disconnect Notices have been
challenges which I have successfully met many times.

What is different when my thinking is not functioning, is that I don't
remember ever being successful. I don't remember being happy. I don't
remember to ask for help. My awareness is completely occupied with the
depressed feelings which seem to have a life of their own as they move in
unrelenting circles.

Now, suppose I have trained myself to take a vitamin B12 sublingual
methylcobalamin in this situation. Then what happens?

First of all, I feel hopeless, so taking the B12 is counter intuitive. I take it
despite the fact I feel certain it will do no good. Sometimes there's almost a
sickening feeling: to "know" I'm doing something useless despite the fact I
know it to be useless.

Generally within a few hours, sometimes in less than an hour, I'm thinking
again -- various things are coming to mind and I'm navigating between them,
making choices and moving forward.

Skipping ahead: As luck would have it, on Christmas Eve, 1997, I went to a
doctor's office near my home that I hoped would be more efficient than the
low-income clinic where I'd been going. In fact, the doctor listened to my
answers to his questions, then said something no one else had, "If your
mother had pernicious anemia, you most likely have it too. It's hereditary."
He said that since I was going to need a B12 shot a month for the rest of my
life, he would have his nurse show me how to inject myself.

I must have gotten pale, because he asked if I could handle that. Before I
could say NO, he said it would make them a LOT cheaper if I could. "Oh,
Okay," I said, and he gave me a B12 prescription.

Right now, manifestations of the brain damage I have include things like back
in May, 2004, after the nightly news when I was mailing out B12 warnings
and I meant the subject to be, "Follow up: the numbers" but I wrote, "Follow
up: the news" --

Not convincing, I know. But think about this, when I sort papers I have a
really hard time getting it right so that no pile is composed of only the papers
I meant to have in it.

To expand on that, let me say that I think the problem is a function of my
thoughts no longer staying clearly differentiated when I try to think about two
things at about the same time (which of course is actually a part of choosing,
selecting and weighing different options).

Say, for example, that I'm talking about the difference between kale and
cabbage in terms of digestion and health... I may begin a sentence thinking
about kale and talking about it, but by the end of the sentence I may be using
the word cabbage.

Where this problem makes me want to cry, is when I want to think about an
idea and I can't keep it's separate parts straight. In university I loved
philosophy, now I can read it for enjoyment, but I can't compare and
contrast ideas as I was formerly able to do.

Or, when I study something, it is clear as can be while I'm reading it and
agreeing. But next day I may have no idea what I read, much less an idea of
the nuances.

I used to love writing about different things in such a way that a connection
between them could be seen. Now, when I want to write, I think thinks like,
"Vegetables are good for us." Or, say I want to comment on a particular
program I watched on telly, I am reduced to thinking nothing more complex
than, "I'm glad you ran a program on