Potholes on the Recovery Road

Those of you who used to read WAGblog at schizophrenia.com know it has been a long slog — 70+ hospitalizations over the course of almost 40 years means more than 9 years in the hospital. Sometimes even now the road gets potholes and rocks, becomes almost impassable, though I am much better at simply, well, slogging my way through. Still, the year from October 2007-November 2008 has been one of the best I’ve had both in terms of my illness and of my general happiness and productiveness. With regards to the first, I have stayed on my medications and as a result stayed out of the hospital. Indeed, over the year I was able to cope with vicissitudes that might have undone me without them, including the death of a very dear friend. My artwork – large-scale papier mache sculptures – has become very important to me, even life-saving, with jewelry-making on the side which I hope will become one day a source of income if I am lucky. As I told my father a couple of months ago, spontaneously but with a rush of feeling that surprised even me: I enjoy everything I do. I wake up in morning and I can’t wait to get to work on my sculptures or my writing. This is not to say that I have no problems, have no hard times or things I have difficulty with. It is not to say, even, that I don’t dread certain activities like parties and holidays. I am terrified of simply calling a stranger on the phone! But what it means is, in general nothing bores me, everything I do interests me, which is a gift beyond measure. So what I tell myself, before doing something I believe I will find difficult, is: At least you might get a poem out of it. And that is enough to encourage me onward.

I am having some difficulty right now, true. Hypersensitivity to stimulation, increased paranoia and voices — I believe this is all is due to infectious disease recrudescing in my brain, rather than schizophrenia. Which is to say that I believe my schizophrenia has a known cause: Borrelia burgdorferi, or Lyme disease.

[Excuse the tangent here: Certain schizophrenia researchers believe that an infectious origin for schizophrenia is very likely. Why not Lyme? B. burgdorferi is a spirochete bacterium, carried by deer ticks and causing an illness much more common now, at least in southern New England, due to humans encroaching on deer habitat. With deer, which naturally harbor deer ticks, the vector carrying Lyme disease, having to co-exist so closely with humans, no wonder the incidence of Lyme disease has increased in recent years, at least in southern New England. I believe we would find it had sky-rocketed if there were a decent test for it and we actually did widespread testing. But there isn’t and we don’t.

Nevertheless, according to the tests we do have, I have been positive three separate times for Borrelia DNA, the so called “gold standard.” This despite having been in treatment for months. Still, many, even most physicians will tell you that Lyme disease is not chronic and is easily cured with a few weeks’ worth of the right drugs. The whole Lyme disease issue is controversial and deeply politicized. At this point, I would say it is mostly a political football – between the “Yale” school of “there ain’t no such thing as chronic incurable Lyme infection” orthodoxy and the increasingly vocal growing minority of infectious disease specialists who say that there is, and who risk losing medical licenses for treating patients longterm with antibiotics. What runs the risk of getting lost in the controversy is the fact that because no reliable test exists, let alone fully unanimous best practice treatments, there are patients out there who are not being tested and not being treated. I wonder how many are instead being told their neurological symptoms are schizophrenia or bipolar disorder or some other neurological or psychiatric ailment?]

Now, where was I? Ah, yes, I had started out by saying that I believed my symptoms were Lyme-induced. My psychiatrist, Dr O, who is also a sleep specialist treating my narcolepsy, believes moreover that it is lack of a decent night’s sleep, regularly, that has led to this flare-up. She insists that if I do not get a full 8 hours every night, I start decompensating. Then Lyme flares up and between the two everything starts deteriorating. I don’t know what to think, but I do know that I have been skimping on the nighttime medication, taking perhaps only a half of the liquid, so I will go back to taking the full dose religiously at 11pm and 3am, and going to bed at midnight to try to regularize my schedule better. We’ll see what happens.

But precisely what symptoms trouble me at the moment? Mostly hearing things, paranoia, excessive startling at the slightest provocation. All this is especially true when out in public, say in a store or public building. The following is one example: The other day, my father took me grocery shopping at Stop and Shop. From the first step in the door, I was panicked because of people threatening and staring and wanting me out of there. He said, “if people are staring at you, it is because you look so frightened. ” I could not hear him. I was much too fearful to do anything but deal with the situation as I perceived it: People telling me what to do, where to go, what to buy or not to buy, and in general terrorizing me. Every time someone passed me or even just approached from around a corner, I startled, which only upset me further, setting off the tendency to startle again. The whole trip was one of near agony, relieved only by our leaving as soon as possible and getting in the car. Once there, my heart rate immediately slowed and I began at once to calm down. And by the time a half hour had passed at home in my apartment, I was myself again.

That is the sort of thing I am talking about. I can’t say it only happens when I am influenced by the little spirochete bacterium, since grocery shopping is usually difficult for me. But it is not usually such a truly nightmarish experience as it was that day.

Paranoia of the same sort has occurred before and does so more when I am out in public or in the lobby of my building, where people tend to congregate around the mailboxes and community areas, than in my apartment where I am alone and feel relatively safe. So that wasn’t unfamiliar. On the other hand, the excessive startling – the kind my twin sister, a psychiatrist, says resembles an infantile “moro” reflex – is the one symptom I most associate with Lyme, my particular case of neurological Lyme. It alerted me to the fact that any concomitant increase in psychiatric symptoms was also due to the infectious disease. Making this connection has been tremendously helpful to me; it has put everything into a context I can understand and accept, and offers a concrete and simple-to-comprehend explanation for both my schizophrenia and narcolepsy, since the same symptoms are seen in Lyme. Remember the principle of Occam’s razor, which says that if you have a complex and a simple explanation for a phenomenon, the simple one is usually better? The Lyme explanation – ie that Borrelia burgdorferi caused my schizophrenia and my narcolepsy – really makes more sense than the more dubious proposition that I have two relatively unusual diseases and that neither one has yet been deciphered (both schizophrenia and narcolepsy remain mysterious in terms of cause and cure).
Okay, I admit that no one here agrees with me completely, but I much prefer thinking of them this way.
Renaming something can carry real power. Just so, calling my illnesses Lyme makes me feel less victimized than calling myself schizophrenic, however indistinguishable the symptoms are. I might become increasingly paranoid and begin to hear voices, triggering concern in my caregivers that a psychotic episode brews. But if I realize that I am startling at every little thing, acutely dyslexic and subject to sudden rage, and that this means it is a Lyme flare-up, everything falls into place. I become, maybe not less paranoid, but less likely to cling to the delusions once they are pointed out to me as delusions. In addition I might be more able to see how I am misinterpreting the world, at least when someone gives me an alternate and perhaps more reasonable explanation.

I would like to add a word or two about those in Stop and Shop who were staring at me, as my father suggested they might have been. if true, this was stupid and cruel behavior. I myself would never stare at someone who looked frightened. Instead, I would give them lots of space so they wouldn’t feel crammed in and threatened. Many people don’t understand how they might seem threatening to someone who is paranoid. At best they only know that they mean no harm, want only to help and so they have no awareness of the threat that person may perceive in what they do. At worst, they stare and crowd and to a paranoid person this might seem the most dangerous situation of all – to be trapped and threatened and persecuted, even if it is by “persecutors” who have no intent to harm or even frighten.

It seems to me only logical not to exacerbate a person’s obvious fear by staring and crowding, but perhaps I understand this only because I have “been there”. I just don’t get it why people can’t appreciate the obvious: if you crowd or stare at a person who is frightened of everything around her, even if you don’t understand she is paranoid, you threaten her and increase the likelihood of confrontation. Paranoid people don’t mean to hurt anyone, not in the sense of gratuitous injury, but if they attack, they attack — verbally or physically — to defend themselves from what they are convinced beyond shade or shadow of a doubt are threats to their very lives.

So while I can see my father’s point, now, that my frightened mien “caused” people to take interest in me, and “induced” their staring behavior, I think he and others should also take a lesson from what I write here. It is something a lot of people need to understand, including police officers dealing with mentally ill individuals in crisis. Several people or even just one if he or she happens to be the “wrong one”, bearing down on a paranoid, confused and fearful person may play a role in that person’s persecutory delusions. If in a crisis you want to help that person, the best thing you could do, aside from giving the person space and time to calm down if that is possible, is to remain at a reasonable distance, speak softly but clearly, and indicate that you understand the person is frightened. That is the most important thing of all: let them know you know how scared they are. You are not afraid of them, but you know how fearful they are. Do not provoke a confrontation; just make sure they know that you understand where they are. If you can accomplish that, you will be halfway to helping them and resolving the crisis.

With that, I must say good night, TTFN and leave my mark: BD

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