Tuesday, August 6, 2013

Good But Spotty

At the last neuro oncologist appointment as we talked about a variety of things them, among them my memory function. The neuro oncologist pointed out that my memory was "good but spotty". For some reason that phrase stuck with me...as a way to view my specific memory, life,  and perhaps those things in general... He mentioned it because of a variety of contexts but mostly because I remembered that the first time I met him wasn't at an appointment but rather at the brainpower5k. Part of the reason I remember meeting him was because it was a race I'd gotten lost in and so I was frustrated with that and we all tend to remember bigger picture details even if not smaller details during times of high emotion.  (By the way if you donate to me today August 6th, my brother will hook you up with a dozen krispy kreme donuts, http://brainpower5k.kintera.org/faf/donorReg/donorPledge.asp?ievent=1058997&lis=1&kntae1058997=E23A9936161C412DBFC5F5B9485BD159&supId=356919075)

People are intrigued by what I do and don't remember. I miss a lot of little things which of course create problems, especially in legal employment. The memory functioned previously mentioned here before that frustrates me the most is the fact that I don't remember faces and names as well (I used to be fantastic at it). Facial recognition is a complex issue apparently  (http://en.wikipedia.org/wiki/Face_perception). For me, it takes longer for people's faces to sink in than it used to During the ESPN interview I tried to explain it to a couple of the guys but they didn't quite get it as many people don't because they think I don't remember names (I struggle with that as well) but it isn't that I don't remember names, it's that I don't remember someone. I'd definitely not volunteer to take someone out of a line up. At the last brain power meeting, the two people in front of me, well, can I say that I'd met them before but I didn't realize that at the meeting (one of them said hello to me in the lobby and I've gotten good at striking up conversation to put together the pieces of how I know them). After we talked I started piecing from the conversation how and luckily one of them added me on facebook after and we took a group picture after. I studied and I'll get them from now on, once they sink, they do sink (yes I know this all sounds strange) but if I studied faces of people the way I need to on facebook or in pictures for them to sink in, it would be at best creepy. Luckily most important people you see regularly and/or we live in a digital age. People have asked why I don't just tell people when I meet them but when you meet people you have no clue how long they'll be part of your life or the next time you'll encounter them and it seems an incredibly awkward moment. The guy from the interview that I recognized was because someone had taken a picture of the camera following me around and he was clearly recognizable in it. This has been a little more frustrating with the media material since now people have recognized me and I don't know whether or not I've met them...

Throughout this journey, as I talk about the reason I accept limits from my doctors about driving, lifestyle changes (no more soccer, caffeine, scuba diving  etc ) which many patients ignore and lie to their doctors about, (and if you think a guy who was the first in his family to graduate from college and put off brain surgery to run a marathon accepts limits well...) is because with each of these limits, I've decided/been able to spend more time and focus with Kiana. I am more than a little embarrassed that people are bragging about my parenting 1) because it's just something I should have been doing and 2) it shouldn't have taken cancer for me to get better at it. It took me much too long to recognize Emerson's wisdom that the miraculous is in the common. While I appreciate people commending me painting my toenails and brushing Kiana's hair, I can count on one hand the number of times I changed her diaper when her mother was around and I didn't have cancer. As I do some fun things with Kiana, people have commented I don't remember if my father did that or I remember my mother doing that or I don't remember a lot of life before I was insert certain age here (for most humans earliest memories are about the age Kiana is now). I don't remember everything my mother did with me... memories of all of our childhoods are spotty but if there's one thing I'm trying to emulate from my mother is that the pattern she had was being there. I grew up poor so the financial limits are what they are and rarely bother me but I want to know I was there with Kiana as much as I could be and that there are some great parent/child activities, friend/friend activities that are ridiculously good and cheap and not spotty. And my attitude continues to be if everything goes right and all I did was hang out with my kid some more, or if everything goes wrong and all I did was hang out with my kid some more, to me that's a win/win.

So I keep trying to focus on the positive, acknowledging, accepting, while frustratedly fighting that just become something is spotty doesn't mean it's not good. While in Chicago I picked up a painting from Van Gogh that sat in my house for Kiana to try to replicate. We spent hours on it, practicing some of the things she would do with q-tips or with her finger onto the final painting and we were pretty proud of the results. Van Gogh's impression/post impressionist style wasn't clean or trying to replicate reality it was kind of bending it while reflecting it, shifting it while portraying it, trying to get it to have some good spots. While Kiana will find her own way in hobbies and pursuits, she was proud of her painting and it now hangs in her room.

Still, while Kiana's gone the next two weeks with her mother so I've been trying to do some new things and get some things done that were neglected when summer was at its best raising my kid all day. One of them was two days ago, I went to go do hill repeats on a trail run. After those Spartan races so thoroughly kicked my ass, I knew that doing hill repeats on trails would be a different game. I did 5 miles of them and for the first 3 I took a different strategy. On the first one I stayed as far to the right as possible, on number 2 as far to the left, on number 3 as close to the center and on the last 2 followed two different people trying to learn from their techniques and 5 miles of "technical" running, let's just say it also kicked my ass. Running from this rock to that rock, afraid of falling, trying to learn how to do it better, knowing that unlike road running, it wasn't ever going to ever perfectly predictable, trying to figure out which spots were the good ones. Though I gotta say, I couldn't decide whether a hill that is so tough to run up or down is correctly or incorrectly called the hill of life.

I had lunch with an old friend who said she tried to take the approach of each day very possibly being your last (waking up in an ambulance and taking pills everyday will do that to you; speaking of memory that may be the most useful advice that has been provided to me by those who have to take significant medication regularly, I leave the last pill thing open to be reminded if I've taken it and when it's time to take it, I have something set up to go to my phone, email, and Kiana's ipad simultaneously wearing suspenders, a belt, and a bowtie ). Anyway, they said they tried to for 3 months but they just couldn't do it. They'd just get caught up in the daily acts of living instead of the living but that they haven't given up trying. I didn't know what to say other than as long as you don't give up on the trying, you haven't given up on the living. So even as spotty as some of it has been, I think my life, friends, family, has been very good.


  1. Oh Iram, thank you for writing this. I am responding to a specific piece of it (so don't think I didn't appreciate the bigger things you said). I am "faceblind" - you may have read about it when you researched racial perception - the "big" name for it is "prosopagnosia." It definitely presents challenges!!!!! And it is hard to explain. Even intelligent people don't understand the literal challenge your brain has putting the pieces together, even with people you have spent a lot of time with. So I get it (that part) is what I'm trying to say! What that means is if we ever meet, we may have to wear nametags. :-)

  2. I don't have brain issues and I am horrible with names and recognizing people! I can imagine that's a struggle though to actually have an issue with something that is already tough for most people. (Hopefully that makes sense? Now that could be called spotty explaining :))
    I could fill volumes with things I wish I would have done differently....people I wish I would have spent more time with....things I wish I would have done, said, etc...You can't worry too much about it, you just have to be conscious of the things you are doing NOW, today, tomorrow, the day after, and so on.

    Recognizing the things you need to do or the person you need to be is the key to the door of actually being that person who doesn't have to worry about how they acted yesterday because they know they did what they needed to do, said the things they wanted to say, etc...

    Any way that's my two cents friend!