Thursday, July 25, 2013

Marriage after brain injury

I am a television junkie. I use the word junkie because I'm way past addict. The good thing is so far no one has died of an overdose of television. One downside is that when I do interact with off-screen people, my contribution to conversations is often references to something I watched. I start with "Do you watch blank? No? Well so and so said blah blah blah."

Once my daughter asked "What's new?" and then qualified it with "and I mean with you, not the Real Housewives." I suppose she has a point. Having television friends is great though. They never seem to mind if you don't understand them and have them repeat themselves over and over. It's no problem if you don't pay attention to them or occasionally yell at them for being so stupid.

The best piece of advice I got was from television. It probably saved my marriage. A couple years after my surgery, as it was becoming apparent that my brain injury might be permanent, my relationship with my husband was very tense. We were fighting constantly. I knew I had changed but I was struggling.

Eventually, we sought counseling. It cost us $200 a week and we mostly just took turns complaining about what the other person was doing wrong. At the end of each session, our therapist told us it was apparent how much we loved each other. It didn't help. We just kept fighting. I kept telling him he should just leave me. I could hardly stand being with myself so I was certain it was unbearable for him. Weeks went by with no change. We were approaching a breaking point.

Then one night we were watching television. There are very few shows we watch together but Criminal Minds was one. A child had been kidnapped and the parents were screaming at each other. JJ, an FBI agent, interjects. She says, "After a crisis, people often look for someone to blame. It is easier to focus that anger and frustration on a person rather than to accept that something bad just happened. Now is not the time to blame each other. You need to be able to lean on each other to make it through this."

My husband and I looked at each other. It was a revelation. That was exactly what we were doing. My brain injury was nobody's fault but we were both so angry. We quit therapy a week later. Now when people tell me I'm so lucky my husband is so supportive, I say "Do you watch Criminal Minds? No? Well, JJ said ..."

Friday, June 7, 2013

It's been awhile

I've been really working hard at getting my shit together. The situation in my sewing room was out of control. Way too much stuff. Armed with giant black garbage bags, I purged. It wasn't easy. Just like those poor souls on Hoarders, I found myself queasy at the thought of throwing away my threadbare sheets. My head was filled with a cacophony of rationalizations. I'll fix them or make them into quilt backs; they we so expensive; they're so soft. I literally had to shove stuff into the trash bags fast and without letting myself think. I am not sure of the exact number but I have parted with over 20 giant trash bags of stuff.

The trickier part of this process is the stuff that someone else might be able to use. I did donate some useful items to the Salvation Army, books to the building library, and clothes to some friends. Sometimes I just made myself throw stuff away knowing I might change my mind if I held onto it for someone or hesitated. Argh! It's taken some of the fun out of my weekly trips to the thrift store. Last week I picked up a small ceramic rabbit. I imagined it in my home and all I could think was Little Bunny, you are so cute I will have a hard time throwing you away. I put him back on the shelf to be someone else's problem.

Leading up to this big spring cleaning, I had been planning to blog about hoarding. It's a problem for many people with a brain injury. It is still on my TO-DO list because I have really learned a lot. Another impetus for the clean sweep was what I learned helping a friend pack and move to a new, smaller apartment. I demonstrated very little patience, demanding she make decisions on the spot. No setting it aside for later when all the like objects are located, no way. Also, containers are the devil. It's too easy to think about what MIGHT fit into them. Do you want it or need it in the new place? Yes or no?

My friend balked, accusing me of being mean. She is certainly not the first person to have described me thus, but I realized I'm fed up with it. I try to be nice, but clearly it is not in my nature. For the first time, I spoke up. I said, "I love you and I'm here to help you. This is what I can do. If this is not helpful, I will go but I refuse to stay and feel bad about myself."

So, that's it. I have a lot to offer. It doesn't come in a pretty package tied up neatly with a bow, but it comes from my heart. It didn't take too long for my friend to think about it and ask me to stay. She even said, "I would rather have a friend who tells me the truth instead of someone who says just what I want to hear." It was a pretty good day.

That is until I was riding the subway that evening exhausted and emotionally labile. I won't into the details but I will say I'm lucky I did not get arrested. WTF?

Monday, April 1, 2013

Brilliant Post from my friend over at Mike' Big Brain Bash: April Fool's

April Fool's:

            April Fool's day is very stressful for me. It is hard enough to follow what people are saying. Oftentimes I find myself stretching to grasp where people are coming from when the say something to me. Very often things don't quite make sense or seem right.
            And then you get a day where people are purposely trying to catch one another off their guard.
"Did you hear we're supposed to get a foot of snow today?"
"April Fools!"
            Ordinarily that's just good fun, but when a person with a brain injury is the victim it can be quite mean. Everybody feels like a fool when they fall for something like that, and the joker feels quite clever to have put one over on somebody. But it is a painful reminder to a person with a brain injury that they have problems with processing information. Sure, it can happen to anybody, that's the spirit of the April Fools holiday, but for a person with a brain injury everyday seems like that and to have a day that is specifically meant to do that fills them with dread.
            So, if you don't have a brain injury, imagine this; What if every day was like April Fool's Day? What if every conversation you were in had the potential of ending in a "Gotcha!" Imagine how that would fill your day with trepidation. You have to admit that it would get quite tiresome. On April first it is hard for anyone to keep up their guard, sooner or later somebody is going to yell, "April Fool's!" and they will be caught. If it happens too often it gets very tiresome very quickly.
            That's what brain injury is like every day. Except people aren't even trying to pull one over on you, it just feels like it. They might as well yell, April Fool's life!"

Thursday, March 14, 2013

Posts deleted in 2010 Post #1

Was hoping I could go back to work Thursday but doc said "No, no, no."

OR: Why do we feel better, when something has a name?  

Therefore, it turns out there is a big difference between a TBI and an ABI and I have an ABI. That cavernoma, cavernous angioma, cavernous hemangioma or whatever you want to call it was in my right peduncular cerebellum. It bled and swelled into my left pons and left peduncular cerebellum. It swelled and extended significantly into my brain stem and was pressing on my left fourth ventricle. I do not even know where those places are or what they look like. 

Still no idea of where this is in the brain, its size, or color. I just added those colors because they look good together.

The MRI showed previous bleeding. Because of the cavernous angioma's location further bleeds, which were almost certain to occur, could be fatal. I knew brain stem was a risky place for surgery but I weighed the choices: death or paralysis, death or loss of sight, death or deafness. I chose the surgery. 

By the time I had the craniotomy four weeks later, I was no longer afraid of death. Do you know the feeling of surgical anesthesia? In one second, you are gone and then you wake as if no time has passed. Even though hours could pass, you have absolutely no consciousness. You do not feel the passage of time or anything. So I realized if I died I would be spared the knowledge of that outcome. I knew if I woke up, then there was only one logical conclusion I could make. I had survived the surgery.

Before the operation, Dr. S introduced me to an anesthesiologist resident who was to give me a mild sedative after which I would be introduced to the surgical team. The next thing I remember was Dr. S trying to wake me. I asked if I was supposed to count backwards and he told me it was over. "I guess I am not dead then," were my next words. The good doctor reported to my family that I was awake and already making jokes. No, my friends, that is called logic. It was not a joke. 

Recovery was supposed to be easy but as you may have noticed from my ranting and raving for the last three years it has not been easy. I have had to advocate for myself with my reduced interpersonal skills and general distaste for asking anyone for anything. 

On Thursday, I saw a new doctor and he took the time to ask me questions and to read my medical records. He recognized my tangents, perseveration, and over-thinking and he brought me back to the point gracefully leaving my dignity intact. He asked me if I had ever heard of:

Cerebellar Cognitive Affective Syndrome

No, I had not so he printed out some information for me. Considering the location of the surgery, it makes so much sense. The symptoms are pretty dead on.
Disturbances in executive functioning which include:
Deficiencies in the areas of:
  • planning
  • set-shifting
  • abstract reasoning
  • working memory
  • decreased verbal fluency
Impaired spatial cognition:
  • visual-spatial disorganization
  • impaired visual spatial memory
Personality changes:
  • disinhibited behavior
  • inappropriate behavior
Linguistic difficulties:
  • agrammatism
  • mild anomia
  • aprosodia
These are the words I had to look up because I had never heard of them before.
The inability to form sentences by virtue of a brain disorder.

a neurological condition characterized by the inability of a person to properly convey or interpret emotional prosody, referring to the ranges in rhythm, pitch, stress, intonation, etc. in language.

(neurology) The inability to remember names.
(neurology) The difficulty in finding the right word

The problem with dysmentria of thought or cognitive dysmentria as opposed to that of dysmentria of movement is that people cannot see it from the outside. I am and have always been a bit clumsy, more so since the surgery, especially with dropping things, falling when I make turns, misjudging how close I am to stuff therefore bumping into them.

Therefore, it is still an invisible disability that manifests as personality defects. I have no idea what anyone thinks of me anymore. While I was in the hospital the last two weeks, I felt sick of being sick. Sick of being different. Sick of being misunderstood. I do not even know who I am anymore. I asked that no one from work visit me and I was grateful that they respected my privacy. 

Sometimes, I feel like I am already dead. The person I was is gone and I am now invisible. I can stand in front of people and they do not see me. My greetings are met with silence. I feel like a ghost.

Thursday, March 7, 2013

Monday, February 18, 2013

Happy Valentine's Day!

I'm grateful that I do not have a giant bleeding tumor in my head anymore.

Looks like a giant angioma. Yikes!

Hearts for sale in Islamabad ss-130214-valentines-12.ss_full.jpg

Wednesday, February 6, 2013

Why blog?

It's been awhile since my last post. I write when I get this feeling that I have something I must say. Maybe, I have a moment of clarity, the Aha! moment when sense making happens. More likely, I write when I am in the throws of confusion and I seek some clarity.

I started this blog to keep friends and family appraised of my progress from the time I was diagnosed with a bleeding cavernous angioma. Besides my immediate family, I was not sure who else was reading. I told one teacher, she had taken me to the E.R. in the middle of the school day, and she did not pass on the message to my colleagues. My good friend Joh Kawano told me months later that she had guarded the existence of my blog like a secret. "I'm not sure she wants you to know," he was told.

Of course I wanted him to know! If I didn't want anyone to know what I was thinking or feeling I would not write it in a public place where anyone in the world can read it. That was the whole point of it, interested people could read it and find out what was going on. Everything happened so fast after my diagnosis. I had my first symptoms in school while I was teaching, a sudden headache and numbness spreading down the side of my face. It was days before I went to the doctor because I was the opposite of a hypochondriac. Then the delay waiting for approval to get an MRI as my symptoms got worse. Once the photo evidence appeared an angiogram to find out if the bleeding had stopped, we got opinions and second opinions about the surgery, and so on.

I continued writing after the surgery because I could express myself more clearly in writing than in speaking. At one point after I went back to work, in one of the many meetings that were called to address my issues, that same teacher (who had become my administrator at that point) said I could be very articulate or stumbling and bumbling over words. Writing helps me make sense of my experience.

Over the years, different feelings have come up when I found out who was or was not reading my blog. A couple of readers I with whom I was in communication turned out to be people who knew my father. It freaked me out a little that they had not told me. My family and a few of my work friends continued to read every blog post and encouraged me to keep writing. At the same time, people I considered my closest and dearest friends revealed that they had not really ever read it. Why would the people I see every day have more interest than the people I see less frequently? When things were going south at work, I was ordered to take down my blog. "A parent had complained," was the reason I was given.

Sometimes when I meet someone new, in the brain injury community or not, he or she expresses interest in my story. Rather than go into all the details, I refer them to my blog after a short summary. I figure that I transfer the power by giving access to the information. You may actively control the degree and quantity of information you get, as opposed to passively listening to potentially more or less that you want.

Recently I reconnected to a couple of my former students who are now in their late 20's. Both women revealed that they had seen and read my blog. One told me that she was concerned that I might not want to know she was reading or hear from me through my blog. The other was concerned that she might be violating my privacy. Both positions surprised me. If there was anyone that I did not want to read my blog, I would not post it on the Internet where the whole world can see it. I would love to know who is reading and I would love to hear from former students. My life or at least this aspect of it is an open book.

Two more things before I close, I will not put ads on my blog. I am not writing to make money and have no aspirations of being discovered (although it would be really cool if what I write was actually helpful or universally appealing). Secondly, I do not ever want to become the kind of blogger who writes out of a sense of obligation or attempts to cover specific aspects of brain injury. I stopped reading a couple of BI blogs because they gradually became less personal and started to sound like self-help books spouting suggestions. I don't have answers. I have a lot of questions. Writing this blog helps me articulate my pursuit of learning.

Tuesday, January 22, 2013


  It can take a site a while to figure out that there's a problem with their 'report a bug' form.

It is when what I rely on to understand how things work isn't working reliably.

Wednesday, January 16, 2013

It was worse than I thought.

Follow up to my inappropriate Xmas party behavior

I am not laughing anymore. Now, I feel terrible. Previously I wrote:

At my friends Christmas party this year, I was standing at the buffet table. Right nearby three men were chatting when a preadolescent boy tried to dash by. One man stopped and remarked at how tall he had grown. What are you, five three, he asked. The boy nodded and I was struck with disbelief. This kid was clearly at least 4 inches shorter than I am so pointing my finger I interject, exclaiming loudly, "ABSOLUTELY NOT! These is no way he is five three. I am five three so he can't be that tall." Instantly I caught my faux pas as the men quickly averted their eyes. "Sorry. That was inappropriate," I say as I excuse myself retreating to another part of the room.

When I relayed this story to my friend, the hostess of the party, her face sank a little. At the time, just minutes after the event, I thought her expression might have been a sign of empathy for ME. Like she was thinking, "Oh poor Aly and her social mishaps..." Another possibility I considered was that she was experiencing concern that I was too loud and disturbing the other guests. The truth is I had no idea the madnitude* of my social gaff.

It turns out that the subject of my story is not a preadolescent boy. He is 14! In addition, his parents have been struggling to figure out why he is not growing. There is no way I could have known this but it makes the faux pas so much worse. It's not so funny anymore.

How can anyone separate my behavior from me? My words sound cruel so doesn't that make me a cruel person?

For now I think I will stay home and not inflict myself on the world.

*Madnitude was a typo that I decided to leave uncorrected because the feeling that my mistakes are compounding, intensifying in frequency and severity may eventually lead to complete madeness.

Wednesday, January 9, 2013

Nightmares: I can't tell what is real anymore.

I talk in my sleep now. I scream, I kick, I cry. When I wake up, I cannot shake the feelings I had in the dream. I used to be able to reassure myself, even in the middle of the dream, that it was only a dream, that I didn't need to be afraid or angry. The dream might even change after that. Now, I wake up certain  that my dream feelings reflect reality.

It is 4 AM and I just woke up crying because I was dreaming that my sister and I were fighting, physically like we did as kids. She had me pinned down and was about to do something awful and then she let me go. As my nightmare continued, she walked off like nothing had happened and I demanded to know how she could be so horrible to me, why she didn't love me anymore. The reason, she responded, with finality, was some story about me that our mother had conveyed. It was the disbelief that my sister now longer loved me because of some second-hand information was what led to my tears.

Even as a kid, i had long vivid dreams and could recall the details and the narrative the next day. What a weird dream dream, I would think. Now, even though I wake knowing that the content of the dream is not reality, I feel certain that the underlying feelings are. It is hard to separate "I" from my brain.

Now, as I write this and gradually feel more wakeful, the feelings fade. My husband has been waking me during my nightmares, no doubt in response to being woken, telling me that I am dreaming. He says, wake up and stop having that dream. Easier said than done. It is not really fair to him to have to try and sleep through my tirades, but I am more likely going to stop having the dream if I stay asleep. Dreams pass as we drift passed REM sleep into a deeper more restful state.

What is so upsetting to me is not the dreams but that having a brain injury is so much like that feeling that my perspective seems so real and can be trusted. I was pretty socially savvy before this happened. I made friends easily, was well-liked, but most importantly could breeze through casual social interactions. Put me at a cocktail party and I was perfectly comfortable, engaging with everyone and working the crowd. Now, I am leery and anxious, mostly because I have learned that I might say or do something socially inappropriate. Despite being armed with that knowledge, I am powerless and unaware when it happens. If I am with my daughter, she gently points out that I am arguing with whatever anyone says. My husband scolds me for being childish or inappropriate taking too many desserts or playing with the decor. I recognize when I see the strange blanks stares or when people quickly turn away from me that I must have done something strange.

At my friends Christmas party this year, I was standing at the buffet table. Right nearby three men were chatting when a preadolescent boy tried to dash by. One man stopped and remarked at how tall he had grown. What are you, five three, he asked. The boy nodded and I was struck with disbelief. This kid was clearly at least 4 inches shorter than I am so pointing my finger I interject, exclaiming loudly, "ABSOLUTELY NOT! These is no way he is five three. I am five three so he can't be that tall." Instantly I caught my faux pas as the men quickly averted their eyes. "Sorry. That was inappropriate," I say as I excuse myself retreating to another part of the room.

I laugh when I retell that story because no harm was done and it happens too often for me to be surprised anymore. What preceded my bold statement was the certainty that the men would be grateful for receiving the correct information. Oh, thank you, we needed a benchmark in the form of a five foot three middle-aged woman so we could accurately gauge the boy's recent growth spurt. It is a split second thought process based misreading a social cue that leads to impulsive interactions. The messages that my brain sends me are not to be trusted. My appraisal of the situation and subsequent judgment is incorrect. I know that intellectually but adjusting to not believing my summary of social situations when I used to be so savvy is difficult.

The impulsiveness, the minor arguments, and the slight awkwardness are all tolerable. What leaves me feeling full of despair, hopeless for the future, is my overall assessments of my relationships with the people closest to me. I can be suspicious and paranoid about my family's intentions. I am often certain that my closest friends hate me. When I take the time to spell out, to my cognitive therapist, my husband, or my daughter, each of the clues and messages that led to my assessment, they help me adjust my thinking. I can see how my brain tricked me into reading information incorrectly. I adjust my thinking and feel comfortable again. What is scary is that sometimes I forget that I had that realization. The next day I am mistrustful again. Who will be there to remind me, hey Aly, you figured out that you were reading that wrong and you are cool with it now? If the answer is just me, I am in trouble because my brain is a big fat liar now.