LBnuke

Today is the 8 year anniversary of K’s and my first date (Thursday is our 4th wedding anniversary ). Difficult times and all, these have been the best 8 years of my life.

K has changed my life in so many ways and opened my mind and heart to possibilities that I never thought were possible.

Before I met K, I had never wanted to live with anyone other than random friends and strangers. I thought it would drive me insane and even thinking about it put me into an immediate state of panic. For some reason, that did not happen when I thought about living with K, and I have loved every minute of it since the first day she moved into my house in Berkeley (with aforementioned random friends and strangers). I have loved it even more since we have gotten our own house.

A few other things that have changed:

• People that I care about now receive holiday and birthday cards.
• I can be myself at home. For the most part, I am myself wherever I go, but much shyer and constantly aware of trying to appear normal. This means expending tremendous amounts of energy trying to focus on what is going on around me and making sure I don’t do things that make me look ‘weird’ even if they make me feel better, like rocking back and forth or jumping up and down.
• I have done things that I would have never before thought possible like going to Europe and enjoying a surprise party.

There are many more things, but I will not list them all here. I will say that these kinds of things happen because of a kind of trust that I have never had before.

I have been thinking a lot lately about the relationship between truth, logic, and trust.

Over the years, I have learned that logic can be situational. That lesson has saved my sanity more times than I can count.

I do not necessarily need things to fit into my own logical framework, but I do need them to fit into SOME logical framework.

I have a lifelong fascination with World War II that is focused on trying to understand the conditions in the world that allowed the Nazi Party to come to power and exterminate over 10 million people and how the US could nearly wipe two entire cities and their mostly civilian populations off the face of the earth by dropping atomic bombs on them.

I have come to the point where I can understand the desperation that would allow people support the Nazis, and the fear of punishment or death combined with feeling powerless that would stop them from speaking up. I do not think I will ever understand the inhumanity of what the Nazis or US government did to so many innocent people.

This kind of situational logic can make sense of things that would otherwise seem completely illogical. Unfortunately, it can not make sense of everything.

One thing that I have learned from being with K for all these years is that there can be truth without logic. This has been one of the hardest things I have ever learned and it is still very difficult to accept it at times.

Here is an example:

Truth A: I tell K that I hate surprises and make her promise never to throw me a surprise party. She agrees.

Truth B: After knowing Truth A for years, K throws me a surprise birthday party.

When I think about this, it seems completely illogical. Why would she do something that I specifically asked her never to do?

But nothing is that simple. There are other truths to consider — other variables and frameworks that affect the situation:

Truth C: K loves me and wants me to be happy. She is aware of what is going on in my head and in my heart. She would never do anything to hurt me.

Based on my simple logic, these 3 truths can not coexist and all be true. But they are truths, so they are true. This tells me that I need to look outside of my own logical framework to understand. Understanding things is very important to me.

Variable 1: Internal logic - In a closed system, there can be internal logic. Every person has their own system of internal logic. It is closed in the way that everything affects it and you can not undo things that have already happened. It is open in the way that it is constantly changing as new information is entered into the system.

In the case of this example, Variable 1 is K’s internal logic. This is my interpretation of that logic at work:

Truths:

• Lori does not like surprises and has asked never to have a surprise party.
• Lori has had a very difficult year and has been much more isolated than usual from people.
• Lori is sad and doesn’t understand why people would want to be friends with her because she doesn’t like to be with people very often and is not always so good keeping in touch with them.

K’s Internal Logic (as interpreted by me):

• It is Lori’s 40th birthday and it needs to have a proper celebration.
• Lori has friends that love her just the way she is. There are reasons for this that Lori easily forgets when she is feeling bad.
• I will throw her a surprise 40th birthday party so that she will know that she has friends who care about her. I will do it in the least stressful way possible - Have the party at home. No one yells surprise.
• It will make Lori happy.

In this framework, it is completely logical to throw me a surprise birthday party. Even though it was totally outside of my own logical framework, the party had its intended effect. It made me happy. I had a great time and I was reminded that I have great friends that care about me.

My own completely logical logic would not have led to these conclusions. Sometimes, logic is not completely logical, especially when there are human beings involved. It is things like this that make life very confusing.

Thinking about all of this makes me realize the importance of logic and truth and how it can be especially important to autistic people that have a hard time deciphering hidden information. By hidden, I mean that it is never communicated directly. This missing information can be the difference between understanding and trusting someone, and isolation from people because of not understanding or trusting them.

To a person who takes things literally and is not so good at ‘reading between the lines’, understanding the logical framework of something can be very important. It seems to me like many people automatically understand things based on a shared logical framework that I have never had. It is the framework of human interaction and includes a set of common beliefs that seem illogical to a person who is not operating within this framework. I am not sure if other people have to work so hard to make sense of these things or if making sense of them is even so important to other people.

K is a person who makes sense to me and a person who understands me. That is a rare and beautiful thing and there is not a moment when I do not know how lucky I am.

One more reason why K rules — She just got us tickets to the sold out Grateful Dead show (to support Barack Obama) at the Warfield tonight! She checked online because sometimes they release tickets on the day of the show. Genius! The show was sold out again a few minutes later.

Happy Anniversary, K!

Today was the last day of Macworld. It makes me sad, but there really wasn’t anything left to do there. I saw everything on the expo floor about 5 times, the user conference was over, and I sat in on as many classes and demos at the expo as I could stand. I am fried as always, but can’t wait for next year either.

Macworld makes me happy. I got here at 6:30am on tuesday morning to pick up my badge and wait on line for the keynote. It was already wrapped around the block. 9am came and the keynote started and but we were still outside. Hundreds of frozen lemmings. I got into an overflow room at 9:30.

The Keynote: An Outline Read the rest of this entry »

Things have been slowly getting back to normal (whatever that is). Both lumps are a lot smaller and I am not so tired anymore. I have even been able to work some.

A nightmare has come and gone. My body and brain have been to all sorts of new places. Most of them sucked.

I don’t have cancer.

I feel a need to make a bulleted list. I love bulleted lists.

Timeline

• Beginning of September - Start having bad pain in my right shoulder and arm.
• Notice a lump about the size of a pea above my collarbone.
• Go to the clinic the next day. Get chest x-rays and blood tests. Doc thinks he feels another lump in my breast and tells me to schedule a mammogram and ultrasound. It is my first mammogram. I am 40. Good timing.
• Start having fever and night sweats. Very weak. Can’t stay awake. Pain everywhere. Lump is the size of a marble. There is another lump in my armpit.
• Fever gets higher. Call clinic. They tell me to go to emergency room. Get more blood tests and IV fluids.
• Me and K go back to clinic to get test results. Doc is grim. Lump is the size of a 25¢ gumball. Looks like lymphoma. WTF?
• Schedule a biopsy. Doc marks priority as urgent. I am panicked. K is in hell. My folks come to visit from Florida.
• I am completely terrified of surgery. Biopsy is my first time in an operating room since I was born. I choose the option for local anesthetic. I am way too freaked out to be totally put under with a breathing tube. I would rather feel the knife.
• Turns out I don’t feel anything. Surgery goes fine. Pain comes later. Still, not so bad.
• Doc finds a second lump in my armpit during surgery. Receive a letter from Summit saying they want to do a second mammogram.
• My folks come. K does everything. We wait for results. They are late. I am on the edge of panic for a whole week. Breathing takes effort.
• The doc finally calls.
  

  “Do you want good news or good news?”, “Good news please.”, “It’s cat scratch disease!”, “No way!”, “Yes. That’s why the test results took so long. We did extra tests to be sure.”, “Thank you. Thank you very much!”.

• Me, K, my mom, and my dad all cry. It is the best thing ever.

It was a crazy roller coaster for all of us. For the rest of my family and some other close people too. I learn things. Some things I already know are reinforced. Some things I think I know… I don’t know them at all.

Things

• Karen is the best partner in the whole world. I can count on her always. She will take care of me. I will take care of her. We are a team.
• My family is there for me too. When I can only think the worst, I realize that I want to be with them. If my life was to end too soon, I don’t want to travel the world. I want to be with K. I want to be with the rest of my family. It is primal.
• My friends are there for me. Sometimes, I have no idea why. I am more thankful for this than I can ever tell them. Thank you TC, D, Nancy, Susan, and everyone else who babysat me, sent emails, left comments, thought good thoughts, prayed, sent good energy, distracted me, etc.
• I want to believe there is a god. Even though I strongly identify as Jewish, I lean towards agnosticism. How can anyone know something like that? But I find myself praying and being thankful that other people are praying too. I still wonder, but it doesn’t matter. I don’t think I can ever believe that god is some giant old white guy wearing a dress and living in the clouds, but I feel something. God? Energy of the universe? Something my brain is creating to keep me sane? I don’t know, but it feels like a miracle. The odds of cat scratch fever were low. It is finally a good time to fall into that small percentage of people who are different.

i have been on the edge of panic for nearly 2 weeks now. ever since i noticed the first lump. there are things that help. sometimes ativan, but I like to leave that as a last resort because so many thing are going on in my body, it is already hard to keep them straight.

distractions help. warcrack has been great when i can play it. writing is helping right now. people have been staying with me every day. i am lucky to have people that care about me like that. I don’t always completely understand why they do, considering that i am antisocial and often suck at returning emails. phone calls are even worse. my parents are coming on sunday. k is there for me always. i don’t know why i get to be this lucky, but i have never been more thankful for it than i am now.

i called the clinic the night i found the lump. Or maybe K did. The triage nurse decided I was worthy to see a doctor and said to come in the next day. The appt. was at 10am. They told me to come at 9:45.

While I was walking over there, I was thinking about what i would want to do if i found out something really bad. i believe that no matter how hard you try to think positively, it is impossible to keep your mind from going to the worst places. First i thought amsterdam w/k, but then got suddenly panicked. no. it is too far away. i want to be with the rest of my family too.

I got there at 9:45 and waited until 10:45 to see a doctor for 5 minutes. He sent me to get some chest x-rays and said to come right back and he would see me again. I got back with my x-rays and waited another half hour. The doc says, “I don’t read these very often, but it looks normal to me.” Thanks doc. He comes back with a nurse to give me a breast exam. He thinks he feels another lump there but is not sure so schedules blood tests and a mammogram and tells me to come back in 2 weeks.

I was too freaked out to wait at the clinic for the appointments and told the receptionist to call me.

i leave. cry. call k. k cries. k comes home.
we are both very very scared. sorry k. always something isn’t it?

had a fever for a while and had to go to the ER and get IV and more blood tests. all blood tests have been normal so far. mammogram was good too. Apparently normal blood tests are a bad thing because they are ruling out other possible causes.

K came with me to the doc to get test results and that is when he told us that he thinks I most likely have lymphoma as mentioned in the previous post. I started writing this post on the day I first went to the clinic, but then was not able to look at it again until now. There is still a chance it is not something terrible. We are all hoping for cat scratch fever which has amazingly similar symptoms to lymphoma.

The doc told us that the first lump would be removed at the biopsy, which was supposed to be tomorrow. It now appears that tomorrow’s appointment is only a consultation with the doc who will be doing the biopsy. Today, I was supposed to get a blood smear, but they had to call the doc with questions about the test and it was over half an hour and they still hadn’t heard back and they kept saying it would be soon or that i was next, but kept calling other names. I wasn’t feeling very well. Completely exhausted and starting to panic. Finally I couldn’t handle being there any more and left with my friend Nancy who had kindly taken me to the appointment and is now in the other room while I am trying to sleep which is proving to be impossible.

This is crazy. Too crazy. I can manage not to completely panic most of the time, to have a very positive attitude some of the time, to get distracted a bunch of the time, but i don’t really know how to stop this edge of panic thing. last time it happened, i took ativan and it worked. i will probably end up taking one soon if writing doesn’t work. it has helped to not be alone. susan came over all day yesterday. tc came at night and susan decided to stay too. k took tomorrow and friday off. nancy is here now. tc is coming back on thursday and maybe tess too. d is coming over on sunday. my folks are coming on sunday night. lorena is helping us to decode medical speak and giving us good questions to ask at the consultation tomorrow. thanks everybody.

Whatever this turns out to be, I will fight it. It is what I do and what I have always done. It is my way.

Thanks to everyone who has left such nice comments and sent emails and have been coming over to babysit me while all this is going on. i appreciate it more than i can say even if i don’t respond individually. i am kind of low on energy at the moment.

I will still have hope that it is a really bad virus or cat scratch fever. Just because the doc was so glum doesn’t necessarily mean he is right. His face and his attitude made me way more scared than I think I otherwise would have been, but after reading around on the internet (not my best idea), I may have ended up just as freaked out anyway. I am thankful for his honesty even if it is making it harder to think positively. I suppose that will make my cat scratch fever diagnosis all the more sweet.

I am starting to wonder if it is possible for me to really have a “normal” life. Things are so much better than before and my meds are finally working again, but even though I can do so many more things now, I am realizing that my limits and tolerance are still pretty low.

Things that have been very hard or impossible to do for the past year:

• Reading
• Working
• Doing martial arts
• Leaving the house
• Playing warcrack
• Being around people
• Traveling

Almost all of those things are easier now, but I still can’t do that many of them without getting overwhelmed. When I get overwhelmed, I can’t think and when I can’t think, I am back to not being able to do anything anymore. It is occurring to me that this will not change. I am not sure why I keep thinking that it will. Things have always been this way as long as I can remember, no matter what meds I am taking and how well they are working.

The things that are hardest sometimes change from one med to the next, but there is never a time when I can really do things like other people can. It can be argued that there are things that I can do better than a lot of people can and I am very lucky for that, but no matter how much I have learned to appreciate my ‘different’ brain, there is still a part of me that is very jealous of how easy it is for most people to do things that completely wear me out or that I can not do at all. I wish I didn’t feel like that, but it is hard not to.

I wish I could be around people without getting confused and exhausted trying to figure out what to do, what to say, when to say it, all while paying attention to and remembering what is going on around me and what everyone else is saying, and how everything everyone is saying relates to the things that other people are saying. People do this every minute of every day as though it was not complicated at all. I don’t understand. I can’t understand. I hate not understanding.

I want to work. I have to work because we need money. We have a house and 4 cats and I have an expensive computer habit to pay for. I love what I do, but don’t even have any idea if I am making money, losing money, or breaking even. I want to do martial arts, but am still finding it too hard to be around people doing something so intense. I keep trying to think of other ways and places to do it, but I can’t think of a way to do it without other people. I wish it was like in the old days where some kind Sensei would take me under their wing and I would wash their car for them. Mr. Miyagi, where are you?

If I work all day, or even worse, try to work all day and don’t get anything done, then I can’t even get out of the house. If I don’t get out of the house, I can’t think. If I can’t think, I can’t do anything. It is a vicious cycle that repeats forever in some form or other.

Lately, there are so many things going on and it is getting harder and harder to do any of them. It is not the meds this time. It is just my brain being itself. I don’t know what to do. I don’t know how to have less things. There are work things and house things and cat things and travel things and people things and non-work website things and computer things and all of the other random things that seem to pop up every day.

I can work, but it is very hard to concentrate. I have been able to read a little. I have been able to get out of the house much better, but it has been getting harder and harder as there are more and more things. I get too confused. I can’t do anything in the house and can’t leave it. Sucks.

It is not all bad. One very fun thing has been teaching Karen to play warcrack. She is on a 10 day trial account and we have been wandering Azeroth together as a gnome mage (K) and a dwarf rogue (me). I think we are level 7. It is fun to play with K. Today she sent me a funny description of how she described what playing is like to a friend of hers:

“I draw the enemies out by frostballing them, then I fireball them while Lori is stabbing them and then she beats them to death.”

Good clean fun