It's the Little Things

There’s an old phrase that if we forget the little things, it’s how we screw up the big things… So every once in a while I try to focus on those (skip this entire entry if you think little things are minutia). So far they’ve been going okay. My marathon training for the first time ever has no injury problems for the Austin marathon now only 3 weeks away… Amazingly, I found my original Livestrong Bracelet in the laundry and put it back on immediately which made me glow (not radioactively though)… the last MRI was not that great but not that bad. There has been some shift but its even possible that it may have gotten smaller but we’re following up with another one in 6weeks instead of 12 but the little thing there is that I don’t have to start radiation (hopefully ever) but at least not for another 6 weeks. Kiana and I made a tiny little lion that someone gave her as an arts and crafts gift at her birthday. I found a roommate, my cousin, who won’t be paying much rent (this is the cousin they named a team after in the tournament to raise money for my medical bill) but is as girly as they come and Kiana adores her. At my last neurological appointment, my doctor waived the fee and had it as an informal visit so that he could sit with one of his students and talk about this rumor tumor and this surgery that went with so few side effects (I came to find out in that session that the particular part of the brain I have problems is part of what is called the eloquent brain). He also let me know that he likely will not be my doctor down the road because for the first time ever Austin has hired a neurooncologist so two of my doctors will combine into one. They are building an MRI like the ones they have at Duke by September of this year right here in my hometown and while it will only be used by special patients… well I’ll be one of them.

There are some medium things on the horizon as well. My medical bills scare me far less than they did when this was diagnosed and my insurance has gotten pretty reasonable about working with me. One example of this is on things like one of the doctors that is no longer covered gets to work with me just for continuity of care. I am no longer worried about last year’s bills thanks to the kindness of a great variety of things from using up savings, to friends raising money to things like my doctor waiving this last fee so he could teach his sudents. I just signed a waiver to help promote some Livestrong stuff. They are going to catch one of me running which reminds me that I got bib #8 for the Austin marathon and Lance Armstrong got bib#7… I joked on facebook that I would definitely not be right behind him and my friend Chad commented that it was because of the extra testicle weighing me down… I hope we always make fun of cancer in one way or another but he’ll be beating me from being a better athlete. I’ve only met the man once briefly but I saw an interview with him recently where he said that he hopes to be remembered as a good father… me too. I’ve also had some friends who have told me that Livestrong got criticized for not donating to cancer research but while personally I’ve raised money for both Brain Cancer research and for Livestrong, I think at the end of the day we need both types of organization. We need help with curing/managing it but since we’re not curing it tomorrow, those of us living with it or dying from it need some help navigating the course. We invented maps long before we invented bicycles or cars or rockets.

Anyway, I may be starting radiation in 6 weeks, I might not. The neuropsychologist may say I’ve lost some functions; he might not. But I’m here today and there’s a lot of good little things, the best one being a little girl. A lot of gray in my gray areas… but at least that bond is still in black and white.

More Than A Good Memory

Today is Chinese New Year’s so Kiana and I went out to eat with one of her best friends, a little girl adopted from China. Interestingly enough, the main reason they became so close was because I would say “we” but the honest truth is that it was mostly Kiana's mom who babysat this little girl for several Saturday mornings in a row while her mother was undergoing breast cancer treatments on Fridays to give her some rest on the weekend. Sarah, her mother, was one of the first people  called after my diagnosis and Kiana's mom, who had ran a marathon herself, helped Sarah prepare for her first half ( the one where I’d qualify for Boston) Livestrong’s first time to sponsor the Austin race.

Anyway, the fortune cookie I received at the end of the meal was “It takes more than a good memory to make good memories.” I kept the paper because it reminded me why I started this blog. Someone from the running community had a tumor near the memory section of their brain. It had also started with a seizure and then a surgery but for almost two months of the surgery, everyday they woke up in a Memento type state not really realizing what was going on and not really themselves with an unrecognized scar on the side of their head. They essentially lost all memory of the last few months before the surgery and the first two or so after it. So for the rest of their life, they have to live with a scar on the side of their head being told they had a brain tumor that was removed successfully and the entire story is told to them from other people’s memories. Now I’ve often said about this blog that this story’s not true, it’s simply what I remember but the reason I started writing picking up a hitchhiker was because if I lost memory functions or had something like that happened, I wanted to hear the story from my point of view. (Picking up a hitchhiker was just as clever of a name as I could come up with because well I’ve always picked up hitchhikers).

I have a follow up with my neurologist tomorrow where we’ll see how the MRI’s compare. I have those 8 hours of neuropsychological evaluations in about 2.5 weeks to measure language, memory and other neuropsychological functions. I’ve worried sometimes I am not worth as much because I can’t remember things as well I used to. I don’t memorize phone numbers with no effort (in fact I busted my tail a few months ago just to try to memorize 7 digits because there was a girl who I wanted to remember her number). I sometimes get a few words mixed up or can’t come up with someone’s name as easy. But Kiana and I are doing some special things, I’m trying to pay back the communities that supported me by running a tournament that raises money for Livestrong, I raised that money for brain cancer research, hoping that somewhere in that back and forth of giving and receiving that has happened, that there is a balance of sucking the marrow out of life but also fighting to delay death.

It’s the year of the dragon but for the first time in 60 years, it’s the year of the waterdragon which is known for calming the fire by taking in other perspective. Here’s hoping that promise is lived out in 2012. Another interesting thing I learned recently is that 8/8 in Chinese culture (my birthday being 8/8/80 and I turned 8 on 8/8/88; the lucky number in China being 8) is father’s day and it’s flattering and humbling to think about the fact that my birthday and lucky number combine into a symbol of fatherhood.

So maybe parts of my memories are worse and parts are better after the surgery… and maybe the neuropsychological will show that they have improved or gotten worse or stayed the same… But none of those things have any any effect on the choices we do to follow my fortune which maybe since birth was always just to be a decent father and make some good memories.

Forced Perspective

My friend Megan recently looking at my Ipod went to the top 25 most played list and it showed one more of my coping mechanisms (and the fact that this is the first time I’ve blogged 4 times in 4 days should show you another one). The truth is that I’ve downloaded more music in the last year than the previous 5 years combined. The top 25 showed that I was clearly heartbroken and trying to find a way to stay positive at the same time. Appropriately enough one of them was Caedmon’s Call Mistake of My Life which has the lyrics:

I'm in love, never been so sure of anything
Then again, could be a tumor in my brain
Tricking me into thinking that we were meant to be
Either way, I'm about to shock my family
And my hometown again
'Cause this time I'm leaving

Once I'm gone I cannot look back
I've got to trust this is right
Maybe I'm on my way to find you
Maybe I'm gonna make the mistake of my life

Kiana's mom and I watched Caedmon’s Call live and I used to listen to that song before we were married and I listened to it as we were splitting up. Life can be odd.

The MRI results came in… sort of. There appears to be no shift between December’s and this one and they are getting a second opinion hoping that there was no shift between November and January’s and that this was a false positive (in my book I’d call it a false negative). There are days where I wish I had a more normal brain tumor with cleaner boundaries…as I write that I wonder why I am not writing there are days where I wish I didn’t have a brain tumor.

My neuropsychologist appointments are still coming in early February. These will demonstrate whether or not I’ve lost any functions since the surgery, another way they measure growth since this can have tentacles invisible to modern imagery. But my dentist would tell you that I definitely have at least more anxiety this time around. At my last dental appointment, it was an amusing moment when the aide asked if I had any major medical changes since I last saw them (it had been over a year, somehow I missed the 6 month checkup) and when I answered brain surgery, she looked up and down several times wondering if I was being serious. The appointment followed up with that my back teeth are being ground down and are flatter than they used to be and they wonder if I’m grinding them in my sleep (or lack thereof).

I filed my taxes, the most complicated they’ve ever been (and something I prepared in order to be able to to deal with a silent house while waiting for the next MIR), and had to answer the question about whether or not I’d had major life changes like getting married or divorced in the last year. Then using turbotax as I have for years it compares last year’s income and deductions to this year and it was uncomfortable at best to see the reduced income, the reduce donations to charity, the increased medical bills. Let’s just say that the medical bills paid which were over 15K paid last year exceeded the 7.5% minimum required for a tax write off. With that and my government salary, I will be getting the largest refund I’ve ever gotten from the government. I’m putting most of it away for a rainy (is it too cheesy to say brainy) day but decided to buy something for myself for the first time in over a year; a new TV since mine was like 7 years old and doesn’t even get signals anymore. And Kiana may be getting a few things for her birthday party that wouldn’t have come without Uncle Sam.

The “rehab tool” that my neuropsychologist recommended was lumosity.com which has apps for both the Iphone and the Ipad. They have a contest going of why you play and I explained it to them which they shared on their facebook wall event and it was the most liked thing they’ve ever put up. At the writing of this, I’m 5th in the voting out of 6000 entries, both of these simple things remind me that I have plenty to be thankful for. They even used my story on a promotional email. A counselor for Livestrong today asked if they could use part of my story on some of their promotional stuff. Coincidentally, it’s on the same day that I’ve got training for their marathon and that I’ve started putting together a tournament that will raise money for the Livestrong Organization.

MRI results, playlists, dentist appointments, rehab contests, tournament organizing, taxes all have forced me to look at the changes that have come and that are now a permanent part of my identity, some with me having such little choice. Still Kiana and I went shopping for her birthday party last night where she got some Little Mermaid napkins and a Little Mermaid bouncy house. Who knows if there will be other scares if/when this one ends but I’m going to have ups and downs. There may be some medical ones, some financial ones, some emotional ones but the best ones are going to be jumping with my little girl.

Hoping and Coping

As I go through medical stuff again, there is no avoiding reflecting on how you get through the day when the question marks are big. At the Livestrong headquarters there is a poster that if you don’t have a social network already, get one. By the grace of the universe, I had one already and it’s a net that is still solid while shifting. It’s interesting that I still have some very private friends who reprimand me for being this public about it saying they would keep that part of their life, still holding onto the stigma that some people with cancer feel they have received.

I for the first time ever sat and read through this blog which was at best awkward and uncomfortable but it sure gave some perspective. One think that was fairly obvious was that I made a lot more jokes before my ex left than after. I miss the laughing about this all and even my neuropsychological points out that making fun of things is clearly how I deal with some of this. As coping mechanisms go, I’ll definitely take humor over some other ones that get you through the day. Luckily, there are still those who remember it and their jokes help keep me going. I met a guy with testicular cancer who wore two Livestrong Bracelets who joked with me that he wore two because he hated cancer twice as much because he didn’t have as much balls as he used to. A coworker who had a heart attack came back and told me that we needed to throw a Wizard of Oz party (who wants to be the wizard of oz and who wants to be Dorothy). Cancer and health issues can be overwhelming but sometimes like political cartoons and satirical essays, it’s good to laugh at those things that appear to have power over us.

Another person going through this withdrew from friends and family and his family asked me to sit and talk with them. I’ve been asked to talk to a few people going through cancer and other health issues and I never really know what to say other than make sure you’re focused on the right things and live intentionally. It’s amusing to be me because I’ve been both reprimanded for talking too much about this (facebook status, this blog) and for ignoring it (going out to eat with friends before/after going to medical appointments, going salsa dancing the night before). MLK said that we must accept finite disappointment but never lose infinite hope. Last year they updated the astrological signs and mine changed from Leo to cancer. I didn’t accept that then nor will I know and while cancer may not be funny laughter is the best medicine. I hope I’m always engaged and ignoring it simultaneously.

In my over planning approach, I’ve sat here and read about what radiation does to the brain both good and bad and rare side effects but also when I do that googling cancer jokes (ie So in case you’ve ever wondered how many cancer patients it takes to screw in a light bulb? Just one but it takes a support group to cheer him on and a lot of grieving after). I don’t know if we’ll be doing radiation or just monitoring forever but either way there better be some good jokes… so my brain doesn’t go into nuclear meltdown.

In My Daughter's Eyes

Last night I took Kiana with me for the first time ever to an MRI. She had asked to go and I checked with a few people I trusted about whether or not that seemed appropriate. I had shown every one of the results to her and of course the poor kid had no choice about seeing her father in the hospital some with stitches on his head and staples. I was more nervous than I usually am both because she was there and because of the recent possibilities. She charmed the staff with her great personality but still I am not sure what it says that when I got to the front desk the receptionist filled out most of the info for me after asking if anything had changed and remarked that she often helps out the people they see regularly.

They make you change out of your normal clothes and put on those silly hospital clothes to go in the MRI machine keeping only your underwear, socks but let you keep non-metal objects; in my case, I only wear my Livestrong bracelet. I’ve done enough of these to where they had gotten to be normal but it was amusing to have Kiana giggle at me and point out that “daddy, you look silly.” The people were incredibly kind and answered all of her questions and let her touch a few things. It turns out that HIPPA laws don’t allow anyone to watch MRI’s but she was there as they drew blood from me and from the outside of the door saw the MRI machine. I have many many times seen her have her eyes wide open with these new things but hers were agape as she saw my new outfit and the machine. She had a thousand questions for the technicians and they smiled and answered them all patiently (probably helped that it was an 8:00 PM appointment and I was the only patient there). Since she isn’t allowed to actually watch the MRI, they also showed her with a cup how it works. Every other time when they draw my blood they say they are going to count down to 3 and then do it and each time I tell them I’ll look away and put it in whenever with my illogical fear of needles still holding despite having been stabbed so much over the last 15 months. They forgot this time, I didn’t correct them and let’s just say I had to quietly panic when they put in the needle since I had to hear the countdown instead of a blind stab but somehow Kiana didn’t blink. Maybe I got to save some pride in that she was focused on my veins instead of my scared face.

My friend Troy took her home while they finished the procedure since she’d be bored sitting in the lobby. In the end as I walked out of the parking lot, I vomited in the parking lot. This is the 4th time I’ve vomited in a week, the other 3 were in the middle of my marathon training workouts. I do it and move it and I’ve talked to the doctors about it and if it continues we’ll worry more since it could be just some stomach thing or nerves about all that’s going on. Somehow I was grateful she missed that part of it.

I got a copy of the MRI as I always have and being the neurologist that I am (oh wait), I sat and compared last month’s and this. I did the appointment after regular business hours (they do MRI’s till 10:30) so they’ll send it to my neurologist and he’ll call me once he has received it and gone over it. I showed this MRI to Kiana as I had with all previous ones who said “it’s cool but I wish I could have been there when they had your head open so I could see your actual brain.” I’ve long joked that all of this is more than worth it if she becomes a neurosurgeon but frankly the fact that she’s curious and cares has its own magic no matter what career she chooses.

I couldn’t sleep well last night and decided to send an email to Club Crudup (http://clubcrudup.com/). Back last August when I won Austin’s first Brain Cancer Awareness race (for which I received a medal, the only race I've won since college) and was the Lead Fundraiser (for which I was grateful to receive 4 nights stay at the club linked above and the club owners are paying for mine and Kiana’s flights as well, not exactly fair since that was off other people's donations), I emailed the people who have helped so much with all this and invited them. Initially I had hoped to go for New Year’s to end 2011 well and start 2012 right and even joked in the email inviting them that maybe I’ll have found a new girl by then. Well, that didn’t work out for a variety of reasons but now I am planning on going the weekend after the Livestrong Marathon, probably the only weekend I’ll take lightly between that and the Boston Marathon. We’ll do some Sonoma things and some nature walks and some great things in San Francisco I’m sure because I don’t know if I have 1 day or 50 years but well, no one says on their deathbed I wish I’d spent less time with my kids. I showed Kiana some pictures and she’s pretty excited. I don’t know what the vomiting from the last couple of weeks is (maybe just anxiety?) so my body isn’t always with me. Part of my brain we already know is way less than healthy so maybe that’s not where to rely on. Still my resting heart rate (47) is still solid, so we’ll go with my heart which Kiana still has wrapped around her little finger. Back to planning her birthday party…

Never Don't Move

I am sure it’s a surprise to anyone who reads this but I write things down every once in a while. I’ve kept a little journal of stuff Kiana has said since she started talking and as I worked on some things for her 5th birthday party, I came across one of the first things I ever wrote down. A few years ago, when taking her to her first movie, long before any of this was on the horizon, we were walking out of the theater. There was a bug on the ground and I told her not to step on it. While she avoided it, she said “It doesn’t matter because it’s dead.” I responded that it was just sitting there but she kept insisting it was dead so I asked her what it meant to dead and she responded “Dead is when you don’t move; that’s why I never don’t move.”

Call it parental bias but I thought that was genius. As I sit here nervous about tonight’s MRI, I’ve been trying to approach it with that attitude. Kiana was with her mom this weekend so I got the things done that I needed to get done around the house and then ran my 15 miles with my running group (this proved why we’re called the ship of fools because multiple people said we ’only’ have to run 15 miles), then had breakfast with them, then played some ultimate with the Riverside Crew, cleaned up the house some and then had a bunch of people over for poker. Sunday morning I rearranged the furniture to open up the room more and then went and played winter league ultimate and then went salsa dancing with some friends.

It was good to have Kiana back, the longest I’d been away from her though because of the Christmas Break arrangement having a weird overlap with the first weekend of the month arrangement , it was 9 days off 2 days on 2 days off so trying to maximize the short time I had with her in 13 days, I took her for lunch that day, ice cream that night and breakfast that morning. The ultimate organization had given me a $50 gift card to Kerbey Lane as a thank you card and joked about using it to take someone on a date so I did and described it in one of my most popular facebook status: "Magical date later today with an absolutely gorgeous girl. She will turn heads everywhere we go. Then we'll head back to my place for dinner and she's even spending the night! I'm such a lucky guy. Couldn't be more smitten with this one. In the morning I'll make her breakfast. After we open her 5th birthday presents."

I’d long make the remark that no one says on their deathbed… and followed it up with something that I was trying to talk friends into or out of doing. No one ever says on their deathbed I wish I’d spent more time sitting around or I wish I’d spent less time with my kids. (The second reason is a huge part of the reason I tried to avoid divorce as I sat and listened to Elvis' My Boy, go listen to it if you haven't) So I don’t know when the deathbed is coming and they make me sit still through that MRI but let’s be clear other than, well I never don’t move. Let’s see if I can keep up with the brilliant girl Kiana who implanted that philosophy.

Memorable Quotes

I had posted this on facebook but thought I'd share it here as well because you should laugh at cancer once in a while. It was a compilation from the Life Part II party:

To doctor before brain biopsy:
Iram: I’m going to give you a piece of my mind

After brain biopsy:
Neurosurgeon: Well it’s clearly a tumor
Iram: Well rub some dirt in it
Neurosurgeon: blank stare

Doctor: You can’t drink caffeine or have alcohol
Iram: What about rum and coke, don’t they cancel each other out?

After the diagnosis:
Chris Sebilia: The things you’ll do for attention
Todd: Well you’ve proved us wrong, you do have a brain.
David Armstrong: Well we’ve always known there was something wrong with your brain. Now there’s proof.
Al: Rust from lack of use.
Iram: If all this results in Kiana being a neurosurgeon, it’s totally worth it.
Alonso: I’d always wanted a brain like yours…now I’m not so sure.
Kiana's mom: Only the good die young, this can’t kill you.

Anonymous: I don’t pray but I’m praying for you.
Iram: Whoa, don’t be asking strangers for favors.

Various about the marathon training: You inspire me.
Iram: Don’t get inspired to get brain cancer please.

After wada tests during shift exchange as they are looking underneath the cover where I am wearing nothing except a bandage near where they went in at my groin:
Nurse 1: Looks good, doesn’t it?
Nurse 2: Looks very good.

Facebook Status: This could possible affect my sexuality. Members of both genders should be excited.
Dave Street: New Year’s should be good.
David Leon: Were getting a sister!? Hhmm Irma or Mari!?
Cassandra: I always wanted you to be my lesbian lover.
Bernie Lee: so you may finally be attracted to women?
Daniel Bergson: One small battle with cancer and all of a sudden you think you can handle being Little Spoon...

On possibility that this would affect language functions:
Kiana's mom: Could we instill a mute or volume button?

Facebook Status: Just got what I've always wanted: a request to donate my brain to science... though I'll concede this wasn't the reason I'd hoped for.
Egon: Remember to get a receipt for tax deduction purposes
Todd: Did you tell them, except for that pesky little tumor, that most of it is in good condition because its rarely been used?
Bernie: Could you be a drug runner by storing dime bags in that space in your head?

When first speaking with Duke doctor who originally stated they were hoping to buy me 10 years
Iram: Well, everyone dies, I just turned out to be more efficient at it.

To doctor before brain surgery:
Iram: It’s not rocket surgery but into your hands I commend my spirit

When having digestion problems after surgery:
Dre: You’re the only one who complains when shit doesn’t happen.

Facebook Status at long term diagnosis follow up: Looks like I’m going to be in that 12 percent nationwide (18% at Duke) that beats brain cancer:
Egon: Would it kill you just once to go along with the crowd?

Random Comments:
Egon: Coming soon in 3D to a theater near you...XMen Origins: J
Egon: Occupy J's Brain
Ram: I imagine all the attention you are getting now will lead you to want to blend in and be normal. Unfortunately J, you never blended in and you were never normal.
Egon (on birthday): The Surgeon General has advised that being 30 can be hazardous to your health; let's see what 31 can do for you!
Todd (about the money people donated for medical bills after results): Can I get a refund?
Lydia (on surgery day): If you haven't already, start sending prayers, good thoughts, positive energy, crazy vibes to who or whatever you send them to. He's got enough fight in him to last ten brain surgeries, but divine intervention would be a nice touch.
Kiana (about her Livestrong anklet which she always wears): I wear this because I'm glad daddy's alive.

Hope and Superstition

An MRI occurs in a few days instead of in early March and will happen once a month for at least most of this year… a neuropsychological occurs in mid January instead of possibly never again… The over planner in me gets excited about this new long term care plan but realizes that it doesn’t kick in until June 1st… The worried about dying in me gets thrilled to find out that the only two parts of my benefits I get to keep from my job if I were to leave are the long term care plan and the term life insurance plan (this is strangely comforting)…

And the things that strike me as scary shows how odd my mind can be. That Livestrong Bracelet had been on since November of 2010 other than for a few moments and today shortly before lunch, I noticed it was gone. I am not superstitious but I am a little bit stitious. I looked all around my office and even drove home for lunch to check my bed and shower for it. I had heard that sometimes they snap off but mine hadn’t ever even looked like it would. In my hopelessly romantic head, I even had this vision that if I ever did find someone who could put up with all the baggage I come up with that the way I would ask if they could get serious was by taking off the bracelet and asking them to wear it, asking that they give me another reason to keep fighting for life. I am guessing it’s gone permanently (And I wore it more because the Livestrong organization specifically connected me with Duke and not just because I have cancer) and I’m wearing another one already but it was a sad moment for me. Oates wrote that “Homo sapiens is the species that invents symbols in which to invest passion and authority, then forgets that symbols are inventions.”

Perhaps again in my cheesily symbolic head, a necklace hangs on my rearview mirror since New year’s day (three days ago) of the infinity symbol. My favorite number 8 turned sideways, realizing that if I ever get a relationship that lasts forever some parts of me will need to be laid on their side. And it sits there in that mirror helping me realizing that you can look forward with hope a lot more often than you have to look backwards… I am not sure which of those symbols I will (if ever) give away first.

I have some learning to do in relationships I realize from mistakes I’ve made as I try this dating stuff… some is that “rebound” effect I’ve heard people talk about, some is from fear of (dis)connecting again, some is from the simple fact that well I haven’t dated since high school, some from that it better be an incredible someone to hang out with Kiana. I’ve screwed up from each of those areas and some of my keeping space helps other people keep it. But one factor is definitely about whether or not I feel like it’s fair to ask for someone to hold my hand on the way in and out of cancer appointments. I think the good people in life stick with each other through rough stuff but it takes extraordinary people to sign up when the sign up has some of the questions looming big at the beginning and that they will never really go away. A friend from ultimate talked to me yesterday about how his father housed a friend who was going through cancer and a divorce at the same time because that was his father’s “nightmare scenario.” I am sleeping a little better than I was after the MRI scare, or at least I’m able to get back to sleep when waking up from the nightmares. But there are still actual nightmares.

A girl from my community of athletes told me “you make time for what’s important to you, period.” So I am trying to as I balance parenting, relationships, marathon training, work, finances, fun. Lunch with Kiana the first day she gets back to daycare instead of waiting till the evening to see her since she’s had a few days with her mom over Christmas break …track workout tonight… happy hour tomorrow…poker with some friends on the weekend…finding babysitters for an evening medical appointment next week… planning Kiana’s 5th birthday party. That’s a lot of important things and a lot of periods.

Han

2012 starts. Yesterday I ran 20 miles and threw away a bunch of stuff so I can disconnect as much as I can from 2011’s many bad things, plenty of which I contributed to. Some were simple, starting with new shoes for sports, some were more emotionally more difficult. I still need to watch Harry Potter because I like the nickname the boy who lived with the scar on his head to prove it. But I also need to stay away from the topic of the unmentionables unless necessary, a new year’s resolution.
I danced last night like no one was watching after having dinner with a friend from work and today I’ll play some ultimate Frisbee and watch some football. Yeah there’s an MRI on January 9th and a 4 other appointments before the superbowl but… there’s still the superbowl. Being the over planner, I am sitting here working on my taxes a few hours into the new year’s, a little overwhelming to looking at having paid over way too much money in medical bills but grateful it is a tax write-off.
The Koreans have a word, Han, which has various translations but the one I want echo is one from the West Wing: “It's a state of mind. Of soul, really. A sadness. A sadness so deep no tears will come. And yet still there's hope.” I still know that the median survival rate for this thing is 4 years without surgery and 7 years with it so you better believe if we make it there’s going to be a celebration on 8th anniversary of this seizure. There are times where the worry and anxiety are scary and create sadness but to quote the brilliant Mariah Carey,
Each night and everyday of my life
I feel with all the joy inside
If there’s a spark of hope left in my grasp
I will keep holding on
And you hold onto hope on little things in 2011 that may well be what makes life worth living. There are a thousand examples but I wrote down yesterday between throwing things away, some of those sparks that keep the good parts of my brain going.
-Someone talking you into taking Kiana to their first Disney on Ice Show
-Someone being kind enough to bring you your favorite dessert cheesecake on your birthday when otherwise you were home alone
-Someone teaching you to braid girl’s hair (I have accomplished many things but my proudest accomplishment to this day is Kiana telling me that I braid her hair softer than anyone else)
-Someone reminding you that you crashed hard on your first marathon but then the next time you did better and maybe are still improving
-Someone reminding you that some of the time there’s just no rush and that maybe you should just dance
-Someone helping you plant a garden, reminding you that there were good things that grew before all this and there are good things that will grow again
So running, dancing, socializing, loving, being loved will make 2012 have much more hope and far less sadness. A friend I’ve made through this, with much bigger battle scars, said several years later, after he finished his first half marathon that it was great to go back from being a patient to being a person. Neither of us ever gets to skip medical stuff as long as we both live but here’s saying that’s like maintenance on a car and that no matter what, I want to state on January 1st, the rest of 2012 is about being a person.