Brain damage and knowing when to go

I used to think that the most important thing was that people should know ‘who I am.’ And thus I stacked up a string of accomplishments, because I was a shallow, self-absorbed twit. Then, I used to do things because they hadn’t been done before; first in my family to get a masters degree, first to a doctorate, first to run a marathon, first to…. Because I was an externally driven twit.

But then I guess we all are in some way or another, as it took me until 19 to start to realize that I could be what I wanted to be: instead of simply NOT being what my parents wanted me to be or being BETTER academically than my older brother, or the other odd drives a youngest child has. I realized I could decide who I wanted to be for myself.

I have granted several awards from different people, Lisa over in Questioning Transphobia gave me an award as a Certified Honest Blogger. Which makes me feel honored. And winning E for Excellent at Andrea’s Buzzing About. Again, humbled and honored. As Cheryl would say, I am about to go “old testament” in my thinking. I cannot accept these because the awards require that I pick others; other blogs to label as excellent, or honest. I do not display awards won in voting even the top lesbian Canadian blog (which I told you to vote AGAINST me!), because something is true or it is not. And I cannot say that this is true. Which is why of the 20 or so awards I have won for my writing, the only one I accept is the Book of the Year award for 2006 for Zed because it was from a collection of book owners, librarians, and readers who annual say, “This we like.” They are not like the Booker Award saying, “This is literature”, but just, “We like this, a lot, so much we gave it gold!” Okay. I can accept that. I cannot and will not judge another human being if at all possible so I am in a way disqualified from getting many awards, but humbled that the people thought of me, in listing them.

That seems like a long way to say that for me, what has been for over 20 years important is to be true (in the most ancient sense): to care as much as possible, to not hurt others when so hurt myself that I cannot care for others, and to seek to create what it true, not what is popular or fashionable. This actually was most of my Ph.D. dissertation, that what one person likes, just because they are the head of oxford, doesn’t make that a better work, it just is more likely to make it a famous or work required to be studied.

Which is how we get to why I am thinking of having Euthanasia.

I have brain damage which produced emotional liability (an overreaction to stimulation, which is not just a reaction, but an uncontrollable reaction), and severe and continuing memory loss. My liability and loss combine to create states which are not unlike those of someone with Alzheimer’s, that I interpret the context, I remember an incident (which may be months or years past) connect it to the current event and have an emotional reaction. After the reaction, particularly if I have a seizure (and fatigue and high emotion are both triggers), the memory will likely disappear.

I have picked up, or learned that I had such a reaction on this weekend. Of this I have no memory whatsoever. Yet, I am informed that due to my emotional liability I stayed up to 5:00 am because of this, either upset or crying. My care givers will not tell me lest it happen again. It appears that for several weeks I have been emotional hurt and argued with people close to me, reacting to what they said. And yet I have no memory of this. Indeed, it sounds impossible that I could not distance myself from the situation. That I would or could hurt people important to me emotionally and not remember, or that I felt emotionally hurt BY them and not remember. And yet, a day or two ago, someone close to me said something, and I responded in what I BELIEVED to be a rational way, pointing out that what they were saying was an exaggeration, and gave an example. I was told that my example was not recent, but from far over a year ago, and this counter, along with the realization of my inability to explain myself and my views rationally without displaying the evidence that I cannot do that made me burst into tears.

Those close to me are burning out, because now, there is no set aspect, but I will completely forget things told to me a day or two ago. Even the morning before becomes hazy. And when people I trust tell me how I have acted, or what I have done, it simply doesn’t seem possible. It doesn’t seem that it could be me.

I am told that I get reactive and cannot emotionally see beyond situations, or even phrases. That I become obsessed. And yet I remember none of this. That I burst into tears for hours. While obsessed sounds a bit like me the rest does not. But to be obsessed to the point of damaging myself, to hurting through callousness others? Who is this person? Just hearing about it from people I trust makes me loathe myself and my skin. That I have disagreements, emotional ones where both parties are hurt and yet remember NOTHING a few days, even a few dozen hours later?

It has reached the point that for my caregivers, they are careful not to react, realizing much like someone with Alzheimer’s, that my asking the same question or being upset about the same thing is not ME, it is the disease. And that when they lose sleep for the third or fourth night in a row because of seizures or other conditions it is not ME, it is the disease. Except it is very hard to do that, even for a short period of time. Which is why I know those who have loved ones with Alzheimer’s call it a disease of intense cruelty. Because eventually the loved one, the caregiver DOES snap, does lash out verbally and hates and regrets what THEY are becoming too. That they are burned out.

Which leaves me, the intelligent, humorous me hearing second hand from my partner or other loved or trusted ones that they need to be away from me, that they won’t be around me so much, and I can’t understand why, I don’t know what it is I need to change. And as much as they say, “It isn’t you, it’s your disease.” It still feels like I, the friend, or companion, or lover or partner, am the one who is being left behind. Because so much of me is starting to be taken over by disease, by this disease.

There was a time, when we talked earlier in life, that if we reached a place where I knew that I was hurting others, that I could not reasonably enter a home care facility, that I had cognitive facilities but that I was aware enough to know I was hurting those I care about, it was time. I don’t know if that is true of this moment or month, but at what point do I wait until the memories of those closest to me is that of a overgrown and highly intelligent child: unable to control emotions, overreacting, often reacting for extended periods and then forgetting and starting all over. How long until they begin to hate me, and that memory is all THEY have, while for me the recent past is gone, the middle past is spotty. I know more about high school than I do about last month; and I know more about Los Angeles than I do about Victoria.

Some of this is vanity, I admit that. I at first would not be with Linda, partner with Linda because I knew, being human, that I could not help one day but hurt her and make her cry. And if I could not live up to the perfection I felt she deserved, I didn’t want to be the one to make her care, and then cry. But I grew, and Linda grew and we fought for our relationship. This isn’t something I can fight. This isn’t something I can “work on.” Because even if I talk and talk and decide I am going to be different in way X, in a day or two, I will remember nothing. I talk before sleeping because I do not know upon waking if I will remember what I said before laying down.

Perhaps this, like many things before it (Oxygen deprivation, muscle wasting, fatigue, pain) is just the cycle and progression for this month, for this time period. I hope that is so, because I can hold on a lot longer as a clear headed person remembering Linda and the life we had together while my body fails, than I can as a person whose mind, emotion and reason fail leaving the body to falter and fail after draining the energy and patience of all those who had, before the nights and days of care giving, cared for me.

I will continue to communication, day by day, day section by day section to Linda and Cheryl and others. Asking what have I done, what am I to do, who can I send a postcard to, who should I send a surprise to, and have I asked Linda to do anything with me recently as a partner instead of a caregiver?

I am not even sure how it is done; do I look at pictures and try to remember things and write goodbyes. Do I have a party? Or is there some line of decision when I cannot remember the daily routines, cannot remember the morning, the last hour where I say, “This is it!” and how will I know THAT is a rational decision. Because even if I make the rules to that line today, I will not remember by weekend. Already I have no idea if I am posting the same posts on my blog, if I am having the same conversations about the same things to people I meet, to people I see regularly, to Cheryl, or Linda. I know that I do, as Cheryl and Linda at least will tell me, “we did this already.”

Is it when I recognize Linda less as my partner than the times when I do, and who, besides Linda or those around me would tell me? How am I to know? I only know what I know from picked up conversations and “But you remember this weekend, staying up until 5:00 am!” But I don’t, I don’t remember Monday really, much less Sunday. And so this post has to be written today before I forget that I am in some ways not the person I thought I would always be; that I am childlike, yes, delighting but also highly fluctuating emotions, with no understanding of the pain that I am in, or the limitations that I have.

I have not hurt people, at least not physically or deliberately, I have not said anything to deliberately hurt anyone so there is that; though I have hurt those I care about because we are so close that my emotional reactions are painful to them. And there is no cure for that, it seems, not for my disease.

But I fake very well don’t I. Except to those who have to clean up, and cuddle me and find me as I live now. I am afraid of things but not knowing why, afraid of care givers coming in but not knowing why, afraid of noises, of phones, of so much fear but not remembering the incidents that created the fear.

And worse for me is the fear that I WILL become someone who hurts others. That I will stop caring, stop knowing how to care even for myself. Time to go, then, but when?