Hi, it's me... I can't come to the phone right now,
because I'm currently laying in my laundry basket,
curled up in the fetal position, screaming uncontrollably.
Oh, and I think my elbow is broken, too, but I'm not
coherent enough right now to figure out what happened there.
Given the current situation, I wouldn't really bother
to leave a message, because I'm really not in the mood
for a phone call tonight...
beep
The good news is, I'm pretty sure my elbow's not broken.
And, no, I didn't change my answering machine message, either.
The bad news is, despite the fact that Dad's visit a couple
weeks ago managed to cheer me up, the evidence indicates that
We Have A Problem.
The sobbing has been coming and going for the last several months.
Since before Christmas.
The uncontrollable anger is a serious problem. I'm still
intensely angry at the people at my doctor's office because
they called me by the wrong name. Three months ago. And
I'm absolutely enraged by the fact that they will do it
again on Wednesday.
Of course, I don't know whether they will or not... it isn't
really fair to be angry at someone for something they haven't
done yet. And if they do so, it will be an honest mistake.
Then again, it's not fair, or even rational to be angry at people
for things I imagine them doing, but I do that too. I get
almost uncontrollably angry working out little rage-laden
scenarios in my head.
I was thinking about all of this, trying to figure out why
it all feels so familiar...
Oh, right. I spent a decade this way. 1992-2002.
Actually, I had been having these sorts of problems prior to 1992,
but 1992 was the year I finally tried to get help. The results
of that "help" led to what I now call "my lost decade".
In 2002 I finally realized that I was going to die and the doctors
weren't going to help me, so I decided to experiment on my own
and see whether I could do anything that might fix my brain chemistry.
I figured that, if nothing else, it was a much more interesting
way to die.
Quite to my surprise, I discovered that a very small dose of
a cheap, generic drug made all of my symptoms go away
very abruptly. I carefully repeated my experiments. Yep,
this clearly fixed something that was broken before.
Unfortunately, this neat little fact contradicts what most
doctors and psychiatrists believe to be true about neurochemistry.
(Why? Because most of them are idiots when it comes to neurochemistry.
Trust me.)
I struggled to understand the new, weird feelings coming from
my "fixed" brain. What had I fixed, exactly?
Oh. This is what normal people feel like.
This is what it feels like to be happy.
This simple miracle drug fixed my brain!
Well, for a little while, anyway. The effect started to wear off after
a few weeks. I cranked the dose up a little bit, and things
got better again... for a month or two. I cranked things up
a little further, and added another drug. The fix finally
seemed to "stick" for several months.
It was time to try to find appropriate medical attention.
After half-blank, half-astonished stares from a variety
of doctors, I managed to find a specialist who had a clue,
and was willing to help me.
For a year, things were... wonderful. Every day was a good one.
Sure, some days I cried, but I had lots of good reasons to.
There was a lot of grief to work through, and a lot of fear
to come to terms with. The future would be a challenge, no
question about it... but I had a future! I felt great.
Scared, because the notion of having a future was a new
thing for me, but... it was great!
It seemed like the first time in my life I had ever been happy.
And there wasn't anything in particular that I was happy about.
I was just happy.
And... the effect slowly started to wear off. Some days were more difficult.
Tears and anger came more quickly. We thought that maybe the
dosages were now too high. We discontinued one of the drugs.
I cried twenty hours a day. The world was coming to an end.
Even suicide would be a waste of time...
We put back the discontinued drug. The world stopped ending. Oops.
Let's not do that again, ok? Bump the doses up just a tiny bit
further instead.
During the second year, things were... good. Most days were
ok. I cried a lot. Things were not going well. I was on a long
road with no end in sight. But things were much, much better
than they had ever been during the lost decade.
Now, here we are at the beginning of the third year. Things
feel like they're falling apart. I cry all the time because
I've completely lost hope that things will ever improve.
Nobody likes me and I'll never fit into this society anywhere.
I'm an ugly freak and I'll always be an ugly freak. It was
absolutely stupid of me to even bother trying to make things
better, since it's obviously impossible for me to make any
kind of progress in life!
And...
... and Dad just bought me a car. And I've just gotten over
my twenty year long driving phobia. And I've taken driving
lessons and done well. And I'm three mouse clicks from
paying off the last of my credit card debt. And when I needed
more help, I actually managed to ask for it!
Hmm, feelings: angry and hopeless. Objective analysis
of actual current situation:
everyone is absolutely amazed and excited at how much progress I've made.
Oh... it's my brain chemistry again, isn't it? Sigh.
And for those of you who are amateur neurochemists, no I
haven't been "tinkering" lately. And it's not that time of
the month, either.
The problem is, what do I do now?
The first tricky bit will come on Wednesday when I go to see
the doctor. I have to somehow stay calm all the way from the
waiting room to the exam room, despite the fact that I'll be
struggling to contain my semi-rational anger.
Then I have to calmly explain to the doctor that We Have A Problem
and that We Have To Do Something Differently.
But what should we do differently?
The easy solution would be to just crank up the dosages
on my meds; the catch is that, given that we've been
doing that for a couple years now, we're starting to
bump up against the safety limits in terms of dosage. Increasing one of
the meds gives me a screaming headache and carries a
heightened risk of heart attack, while increasing the
other one gives me a very high risk of stroke... and
I've already had one stroke, although we don't think there's
a connection.
The harder solution... well, we think we know where the
bogus brain chemistry originates. We can surgically remove
the problem at the source. With that done, I can stop several
meds, and cut the dosages way back on the others. Massive
safety increase.
Assuming it works.
This is the essence of the problem. We have moderately good theoretical
reasons to believe that it would work. We have two years' worth of
neurochemistry experience with my brain that suggest it would
work. And I've heard several anecdotal reports of this sort
of thing working for other alien-like people.
But given that, even in a group of very atypical people, my
brain chemistry is definitely weirder than most... do we have
enough evidence? How can we know for sure?
That's easy. We can't. It won't ever be "this will fix my problem."
It will be "if things are bad enough, we can try this."
And if it doesn't work... we're stuck. There's no going back.
What frightens me isn't really the irreversible nature of the
surgery. Although it did take me nearly 20 years to have my wisdom
teeth removed; I'm just not that keen on having bits of me removed!
What really frightens me is that, to be blunt, we still don't
know what's really wrong with my brain chemistry, we don't know
exactly why the drugs have worked so far... and we don't
really have any proof that the problem, whatever it is,
is actually fixable in the long term.
Here are three nightmare scenarios:
Nightmare Scenario #1: All we've managed to do is induce
some sort of transient effect that happens to correct
my bogus neurochemistry in the short term, but simply cannot work in
the long term. There are other neurological problems that
work that way; the drugs help... for a little while. After that,
they slowly become useless. Maybe my time is just up.
Nightmare Scenario #2: The problem is only "fixed" when
my neurochemistry is in some dynamically changing state.
For instance: if the level of some particular chemical is falling,
then my brain is fine, and once the level reaches a steady state,
the problem comes back. If something like that is the case,
and we've taken it as low as we can, the only solution
might be to let the level go back up to normal, and then
ride it back down again. I call this one the
"roller coaster" scenario: I can only be happy when the
graph is going downhill. If this turned out to be the case,
I would essentially be cursed with a weird kind of induced bipolar disorder;
if I could endure a year
or so of hell, we could get back to the top of the hill,
and I could have another year long ride of happiness.
Repeat for the rest of my life... which would likely be cut
short by one of those long, dark journeys back up the hill.
Experience indicates that the rising edge is profoundly unpleasant.
Crying for twenty hours a day is bad; could I survive a
year of that?
Nightmare Scenario #3: There were parts of my brain that didn't develop
on schedule. Changing my brain chemistry may have allowed those
pieces to finish growing up, as it were. This would explain,
among other things, why I seem to be going through puberty for
the first time at age 37. However, once those bits have matured
properly, the right thing to do to "lock in" the fix might be to
allow my brain chemistry to return to its natural state. If this is
the case, surgical intervention might be a disaster; we might
not ever be able to get back to the "native" state after that.
Then again, the journey back to my "native" brain chemistry would
certainly be painful, difficult, and potentially life threatening.
Have the drugs become useless? Or am I trapped on a neurochemical
roller coaster? Or am I contemplating doing the exact
wrong thing? I don't know. But these are some of the many
scenarios I considered two years ago, before we embarked
on this peculiar therapy. Then, as now, I was haunted by
one question: what if it stops working? What will I do then?
Well, that time is approaching... and now I have to figure out
what to do next.
Choosing an appropriate therapy is very difficult, given
that the appropriate chapters of the medical textbooks
probably won't be written for another twenty or thirty years.
Meanwhile, I'm left trying to make a life and death medical
decision, knowing full well that there's no way to know
what the "right" thing to do is.
I've never been faced with a decision like this before.
The experiments were so much easier years ago. I knew I could
never be happy. I knew I was going to die. There was nothing
to lose. And it was all fascinating.
Now? I know what it's like to be happy. And I can probably be that way,
for the rest of my life! But only if I make the right decision.
And if I make the wrong decision, then I either die, or spend
the rest of my life suffering.
No pressure or anything.
My guess is that we will end up doing something like this.
Step 1: Increase dose of potentially stroke-inducing drug.
Take even more aspirin as an anticoagulant. Pray a lot.
Consider alternate formulations or delivery methods
for increased safety.
Step 2: If things seem to get better after two to four weeks,
maintain the new, higher dosage, and
wait a while (a couple months?) to make sure my brain really is
back in a stable state.
Step 3: Begin the long process leading up to surgical intervention.
If the doctor doesn't go for this, I can do the first two steps on my own;
it's not any riskier with him or without him. For Step 3, though, I'll
need to find a surgeon, and that would be easier with my doctor
on my side.
I'll also probably need a psychiatric eval, which should be easy...
provided my brain chemistry is in a stable state at the time! My therapist
(who isn't a psychiatrist)
has been following me for the past two years, and she's
familiar with the surgery option and does not oppose it, which
is a good sign, I think.
And then we'll have to try and fight with my insurance company.
It's probably worth a try, anyway. If not, I'll be stuck with
yet another financial burden. But the credit card will be
paid off by then, so I'm sure it's doable.
And then: Surgery. Again. What will that be... the third time?
Yep... third time, in that general area. And, if all goes
well, it won't be the last, either. Maybe one or two more
operations after that. If I'm lucky.
But wait... we could skip some of those surgeries, if we
move the timetable up on the others. Do we want to do that? If so, the
insurance company won't pay a dime, and it will be
horribly expensive. But would it be better for me?
Safer? Does it even matter? I don't have the money.
Sigh... I'm so tired of all of this. I've been fighting
this all my life, although most of that time I didn't
even know what I was fighting. And now I'm just...
tired. But I still have years and years to go
before things will even settle down a little bit.
The fight probably won't ever be over. I'm just stuck
with that for life.
While discussing the alien thing, someone once said to me,
"Well, if you want to be that way, why should anybody mind?"
I guess a lot of people think it works that way.
Um... why would *anybody* want to "be this way"?
I certainly don't want to "be this way".
This is what I have to work with, and I have to do
the best I can. There's nothing else I can do.
What I want or don't want has surprisingly little to do
with any of this.
The brain chemistry is what it is... all I get to do is help
choose what to do about it.