Wednesday, July 11, 2012

Performance Index

Most people won't get this or understand or call it superstitious but for the first time since the surgery today my BPI (brain performance index) went higher than it's ever been on Lumosity. Confidence, belief, comfort, whatever you want to call it matters in how your brain operates in my book. As I’ve sat here and wondered what the hell is going on and still trying to absorb it, I still played the brain rehab games today. I emailed the letter to some doctor friends and still trying to process that this may all just now be an inflammatory tissue left but somehow that lumosity score was somehow higher than it’s ever been was heart warming. I’ve had some nice emails and comments on facebook and calls about being alive but, let’s be clear, I’m still going to die and all the way down to death I want to be the best I can be mentally, emotionally and physically every day in every way that I can. 

I traded some emails today with friends and family but I was surprised by one from a complete stranger and some of the stuff we talked about is probably left between “stranger friends” but it was an incredibly sweet email to start it:

Hi Iram,

Not sure if you remember me or not, but I found you through a donation to Livestrong and have been following your blog since about Christmas time. Reading your posts has been such an emotional adventure for me. Much more so than I could have ever imagined. I feel like we are old friends and that I have known you for a long time. The reality is that I just know what you have written and you know nothing about me. However I want to thank you for sharing your life so openly through your blog. Last night I was sleeping when my boyfriend woke me to read your latest entry. I was and still am completely shocked. I was breathless, confused, amazed, and overjoyed as I read your post. I was at a loss for words and could only seem to cry. I was so happy after reading your post I could only manage tears. I obviously have always hoped and prayed for the best for you, but never even thought about something like this happening. I am sincerely happy for you and just wanted to send my congratulations your way. Life is a certainly a mystery. So much to be thankful for and thank you again for sharing your journey. –

The rest of the emails interestingly enough were about the job and the girlfriend and she was telling me to be more and more open to the possibilities and thought I should visit her family with my family and do a race (apparently she’s crazier than me and runs ultra marathons). That idea of an ultra marathon hasn’t stuck in my head but the cycling, if I ever get a bike has gotten the idea of a triathlon or duathlon in my head. She appreciated the rawness of this blog which frankly it is because I am talking to me in case the memory ever fails and now that I’m less worried about it failing very quickly (be assured I’m still worried); there are in fact references in here that only I can understand to test that memory. But even if that massive failure memory never comes, going back and reading it, catching slices of time I think is worth a record of all this until/unless a “new normal” is ever achieved. She was kind enough that she can’t wait until the story has that new girl and those new job great elements. I hope she’s right.

But with that said, I realized after the emails that I had a conflict on July 23rd of both the cancer and relationships class and the last track meet… and I sat back and forth on which one to cancel… and finally I emailed Livestrong and canceled my reservation so that in a couple of weeks I can go to the track meet but I emailed the counselor who works with a lot of these classes and asked:

1)      I think I mishandled the way I did this with my cancer stuff and relationships... since the divorce I had gone on a couple of dates with a girl and then my MRI showed something strange and I cut it off almost instantaneously... A few months later I went out with a girl from my running group and then I was found collapsed on the side of the road and literally, despite her coming with me to the MRI that night and starting to wear the Livestrong bracelet the next day, within 48 hours of that I told her that we were better off as friends. Maybe it's the same instinct I had that drove my wife away but it seems I keep trying to protect people when I'm reminded I have this thing in my head that I never saw coming and can't control, how, when is the right way to share this better? 
 As you know, I got some surprising news and am still trying phone calls and emails with doctors (by the way the medical phrasing is that all that's left is that now the findings favor an inflammatory process which can be followed by just a local neurologist. I've called my mom and my family but again from some of the poor phrasing I used with my daughter (I had a booboo in my left temporal lobe) being directly contradicted by your parenting with cancer class about not using the word booboo because it's not an everyday thing (they were so right about that and I wish I'd realized that you know not a year and a half later), what's the correct way to tell her about the new development. 

By the way, for whatever it's worth, when I called Livestrong I was offered medical answers and connections to Imerman, Wonders and Worries, Counseling etc. I took your medical recommendations and ended up at Duke and then tried to protect everyone else from it as best as I could. I eventually would do all the things you guys recommended and wish I'd listened earlier. Obviously living in the past serves no purpose but I keep attending your classes because I think you guys do amazing work.

I wish I could figure how to do things better with my ex to this day so that somehow makes me feel less guilty, maybe she just couldn’t handle the stress. She continue to fuel the fire of staying alive for my daughter by doing something that was to me so inadequate today. During the past extended summer visit (she gets 2 15 day visits), I went to visit Kiana and she literally tried to get the daycare to stop me from visiting or taking her out for lunch which them and I found bizarre. so for the two weeks she has her next time she won’t be putting her there or taking time off but putting her in one near her place. I am not sure what happened to a woman I so thoroughly loved but it continues to help that I don’t recognize her and I’m figuring out a way to stay here for this little girl whether I have 1 day or I get to live to be 88. I am never going to spend an ounce of effort to keep my daughter away from her mother but I am also not going to respect someone doing so with no gained time with their daughter. No one says on their deathbed I wish I’d spent less time with my kids.

Should I have gone to the class again instead of the track meet again? I’ll never know. The blogger got blogged about today by Livestrong, the other story is way cooler ( Somehow the track meet is a little easier because there’s more concrete goals… if there was someone I was with and trying to make my relationship with them more coherent I’d probably have missed the track meet (let me put it this way,  not too long ago I missed a running event in order to attend a Cancer and Parenting class).

And the job as has been their pattern wants to drag this out so tomorrow is the deadline I set for them. I imagine they aren’t going to be ready to do it on time and so on Tuesday I am signing something with an attorney and it will drag out because maybe sometimes thinking you don’t know everything and trusting someone else to help is smarter than you. It’s funny I’d set the deadline for July 15th about job, house selling details, work details etc. This wasn’t on the agenda and it came a few days before that and messes with all that. My life is very very strange. But I’m going to keep going, keep keeping on, trying to get faster, trying to raise that BPI, trying to Livestrong, trying to remember that to whom much is given much is expected, and stealing that little girls nose and letting her chase me around the house to get it. And they don’t measure parenting but I hope that somewhere down the line I get some index that I did something right.

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