I found it hard to see how things as seemingly far apart on the importance spectrum as brain damage and low B12 could be related. To me, low vitamin B12 levels 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 low vitamin B12 levels 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.
Let’s just say my experience with brain damage was devastating. The image I previously used for this page was drastic looking. It had dark red and black around equally red/black art of a person looking haunted beside a missing window pane. The “pain” part struck me.
Because of the significant recovery I’ve had, I now see brain damage more like a cloud, and that’s even after a later traumatic brain injury that took much of the brain function I loved most.
The light went out of my life after I had the traumatic brain injury. It was hard to talk, so I avoided talking. I avoided people. Not surprisingly I became quite lonely. But then, Voila, vitamin B12 broke through the cloud. Too good to be true, Right?
It wasn’t a complete, total recovery so I kept using vitamin B12 and doing things a therapist said would rebuild pathways in my brain.
I saw the therapist through a state vocational rehabilitation program after I fell and hit my head on a brick floor, which caused a traumatic brain injury. I might not have believed the therapist, about recovery being possible, except that when my son was under a year old he found a door closed that had previously always been open. He had never been stopped from crawling forward by a door. So, when he crawled up to it he just kept crawling. He had no concept of “a door” or being blocked on a path he knew well. After bumping into the door, however, he didn’t try to crawl through one again.
What I take from that memory is the vastness of what we have to learn. It helped me when I felt devastated by my loss of the ability to think clearly and use words. My ability with words is what made me who I am, it was how I recognized myself. But suddenly it had been taken. The words I needed no longer came to mind. So much of what I said was clumsy. I had to keep reminding myself that my little son had to learn everything and though it took years, he did. Not “everything” of course, but you get my drift.
Today, it is as if sunshine has broken through the clouds that had thrown my brain and thinking into darkness. For me, the sun is a good illustration for vitamin B12. The exercises I keep doing are the solar panels, as it were, that receive the sunshine and transform it into effective energy.
I had no idea I had brain damage
Way back, 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 places in mind, my immediate reaction was intense anxiety. If I was 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 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, I could think back over things, or forward, and my mind would display whole series of events.
But after a lot of stress that destroyed my ability to sleep I developed a “profound” vitamin B12 deficiency and the memory function of my mind faded.
I am unclear whether in time, if I had not had vitamin B12 replacement, 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.
I can’t help but wonder how many people who are experiencing something like this are condemned to being treated as victims of Alzheimer’s.
I knew the stress was affecting me, but…
When IRS enforced against me for 1984, a year I had paid, which I told IRS, sending 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. I didn’t appreciate how deep that stress went, the stress of the “hopelessness” in the situation.
Complications ~ This is for people who have experienced prior abuse.
When stress becomes overwhelming
When someone in my life berates me, whether it’s my brother, the government, or someone on Twitter, 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 gradually became overwhelming 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 earthbound 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 what 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. It was as if my life were an elevator that plummeted 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 for me. 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 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 experience 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 to heat, not having money to buy vitamins and good groceries, having my utilities 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 I could sleep, and that the less 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.
I began to recognize my anxiety
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’d become 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. That’s how 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 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 me, 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 concentrated on my breathing when I was driving, as the be all and end all, I now saw confusion/anxiety as a totality. They were “The answer” to “What is my problem?” I didn’t question whether confusion and anxiety were signs of something wrong physically, deep within me.
3 Ways I Coped
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 of trying 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 me 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. Today, if I do one thing, I find myself thinking I’ve done enough for the day. That is, of course, not good.
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 tunnel-vision view.
A 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 a confusing element like stress. Its weakness is that there are times when there is not a single thing. A good example is a series. For instance, I bought an oil filled radiator with a programmable LED thermostatic control. 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.
Feeling and thinking share a teeter-totter
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.
There was a period of time when I could watch a movie as if for the first time, till something at the end struck me and I realized I’d seen it before. This is not the same as suddenly remembering; rather, it’s a feeling at the end of the film that’s suddenly 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-totter: 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 wrote 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 flooding” ~
When I sort papers I have a really hard time getting it right, no pile is ever 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 its 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…”
This last bit has a lot to do with Haldol, and an experience which I was loath to write about when I began this page. If I had been injected with Haldol prior to my IRS letters, I could NOT have written them.
In 2001 I fell and hit my head on the brick floor in my condo that was built over a full, outdoor toilet pit. The fall caused a traumatic brain injury which is different in that while B12 was not able to help as completely as it had in relation to the low vitamin B12 brain damage.
Because I appear to have to make my neuro-psych test report a part of the public record in the foreclosures, I want to post it so that everyone can see it with the corrections to the history that should be made. 3/16/05
List of Symptoms of Cognitive Disorder, Areas of Cognition and What Neuropsychological Testing Looks For ~