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.