Why I Run

I have never been a “natural athlete.” I have never had talents for the athletics, and I trip over air periodically.  Knowing this (I guess I was always a slow slothy child), my parents put me through vigorous athletic childhood.  I swam for 10 years (2 to 12 years old), and played tennis for almost just as long (though from end of elementary school through high school).  I also dabbled for a few years each in ballet, ice skating, tap dancing, Irish line dancing, precision jump roping (yes, this is a thing), and horseback riding. For 3 years in high school, I also ran a season of cross country (until I was taken out by knee injury senior year).

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Me Pretending To Be A Runner in High School

Having neurosurgery didn’t help with my motor skills, and I was clumsier than ever.  I had to regain my gross motor skills as well as my fine motor skills, beginning with simple motions of moving my fingers and relearning how to stand unassisted, to using eating utensils and walking. The human brain seems to have a miraculous ability to learn certain things, and I was hobbling around after a few days (though only few feet at a time), and I was able to use my chopsticks to bring my daily bowl of noodles to my mouth (I was unable to digest much else, always nauseous from the drugs).

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Me Pretending To Be A Tennis Player in High School

I had never liked running. I ran Cross Country in high school for the first 3 years, even making the Varsity Team for a little while (but it was mostly because we didn’t have enough runners to fill it up), but I hated most moments of it (except maybe when I was crossing the finish line in a 5K race).  I ran Cross Country not because I wanted to, but because I needed to prepare for the Tennis season in the spring.  I played tennis a few times a week at a private clinic over the winter season, when I did not play a sport at school, but during the fall, my parents decided that it was better for me to run to keep in shape, and only take one or two lessons a week.  Given I was in orchestra, taking private violin lessons weekly, and had a healthy load of AP classes, I don’t know how I managed to juggle my time.  It probably helped that I had no social life whatsoever, so it wasn’t like I was not already spending majority of my time out of the classroom in front of my computer.  My parents knew that if not forced via structured activities, I would remain sitting in front of the computer until I rotted into my chair.

In the beginning of this year, I made a conscious decision to lose weight and become more fit.  I had been gaining weight progressively for the past few years, and had reached my maximum weight. I felt tired and heavy, and couldn’t fit into my clothes. I was basically becoming sick of myself and the body I lived in.  So I decided to change it.  Running was the exercise of choice for me, because other than a gym membership (it was dead cold this winter) of $10/month, I could do it without equipment or classes. I did consider kickboxing and yoga (tried once), but in the end, the most convenient fell down to running; first in the gym, and then outside when weather started getting nicer. (But let’s get real: this is NYC, so it was 25 degrees few days ago. In April.)

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Me 40 Lbs Heavier But Having A Lot More Fun Than High School!

In March, I registered for The Aneurysm and AVM Foundation’s Annual 5K Walk in San Francisco. That was what tipped off a ripple. Once I made the decision to enter the walk and buy airplane tickets, I began chatting with The Aneurysm and AVM Foundation’s outreach personnel, and made a snap decision that I’m going to become a runner, and run actual races. Not “in a few years,” not “when I’m ready,” but this year, and A LOT OF MILES, to boot. This was where Steps for Burgundy: My 25 Race Mile Challenge for AVM Awareness came about. I am working on fundraising aspect, but I want to focus on the “awareness” aspect of the running for this year.

I will be running at least 25 miles in races for 2016, and starting out with 17.7 registered miles by the end of June.  Throughout the year (and hopefully for many years to come!), I will be blogging about my running and my races with photos and videos, and lots of enthusiasm. I can’t wait to have a tangible way of spreading awareness, while being excited for getting back into shape, because I’m sick and tired of feeling so sick and tired all the time!

I just ran my first 4 Mile Race a week ago, and it was AMAZING! I had never ran a 4 mile race before, even when I did Cross Country, and in the past decade, I hadn’t ran more than 2 or 3 miles outside at a time.  Somehow, I did pretty alright for a beginner runner (10:42 minutes / mile time for 4 miles), and had a lot of fun with my best friend. READ MY POST WITH PHOTOS AND VIDEO HERE:

The Facebook Page for Steps for Burgundy is running along as well (in case you want to follow us… wink wink): http://facebook.com/StepsForBurgundy

I recently read and enjoyed an autobiography by Haruki Murakami, on being a runner (he is a marathon runner and triathelon).  It was inspiring, and lifted my spirits before my first 4 Mile race. You can read a sample below, if you’re looking into running like I am.

What inspirations have you had recently to create a goal and stick with it?

Our March for Brain Injury Awareness #NotAloneInBrainInjury

12794438_1028767833863412_3390581985308676447_nThis year’s hashtag/motto for Brain Injury Association of America‘s Brain Injury Awareness Month is #NotAloneInBrainInjury.

The campaign for 2016~2017 is “Not Alone“:

The Not Alone campaign provides a platform for educating the general public about the incidence of brain injury and the needs of people with brain injuries and their families. The campaign also lends itself to outreach within the brain injury community to de-stigmatize the injury, empower those who have survived, and promote the many types of support that are available. (Brain Injury Association of America)

This is a powerful and very important message to get across to survivors and supporters alike, especially because Brain Injury is very often an Invisible Disability, where the fact that someone has the disability is not readily apparent from just looking at the person.  This means that, more often than not, one will pass a person with Brain Injury and not even realize it.  However, according to the Brain Injury Association of America, 1 in 60 people in the US live with a Traumatic Brain Injury related disability.

The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments.  These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person. Also, someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have invisible disabilities.

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Having a Brain Injury can cause the survivor and often by extension their caregivers to become more isolated, giving off an impression of being alone.  This could happen in may ways, ranging from physical isolation (not having support groups near by, not knowing any other survivors, not being able to access social life due to the brain injury, etc.), to psychological isolation (mental illnesses that come with brain injury such as depression and anxiety, or social relationships deteriorating because of disabilities or social stigma of brain injury).

They may feel alone, disoriented, and forgotten, unsure which way to turn for help, assistance, or resources.  This year, I hope that many more survivors and their families and loved ones find that they are #NotAloneInBrainInjury, and that there are options and resources for support.

I was also isolated and felt alone, especially with being diagnosed with Arteriovenous Malformation (with prevalence of only 18 in 100,000… I never thought I’d meet another person with an AVM!).  It was not until half a year after my surgery that I realized that there were online active communities of survivors and supporters who provide support and resources for each other.  It was from there that I found that there are survivors near and around me, and met face-to-face many of them.

“Not Alone” Campaign & You

You, as a survivor, supporter, or a by-passer of this blog, can help spread Brain Injury Awareness this month, and help the “Not Alone” campaign.

If you are a blogger, perhaps you can donate a small section of your next blog post to Brain Injury Awareness.  We exist. In many numbers (over 12 million of us just in the US, as a matter of fact!). Perhaps a few of your own readers have Brain Injury, or know someone close to them who has!  If you work in an office, maybe a print-out of the flier at the coffee room, or request the “Friday Jeans Day” to be in honor of Brain Injury Association in your state. There are many things, little and big, that we can do to help spread awareness this month.

Please go take a look at Brain Injury Association of America’s page for #NotAloneinBrainInjury, download toolkits, fact sheets, sound bytes fliers, and and tons of other resources. Put them up, share them with friends, and use them in social media.  It will be surprising who may be living with  Brain Injury, and feeling “Alone” right now, not knowing where to turn to, or how to find peers to discuss concerns and experiences with, knowing that the other has also lived through similar situations.


 

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A Lesson in Slowing Down

I am a huge proponent of the importance of “Listening to Your Body.” If it’s tired, I’ve told countless frustrated survivors, it’s not being “lazy” to stop and rest. It’s a necessity. This goes for neuro-, physical- or mental- fatigue.

Since I began my recovery process from my craniotomy four years ago, I have become keenly aware of the way my body and brain warns me when I have over-exerted myself. This is mainly because I am no longer able to gauge how much I was being over-ambitious with my body or brain intrinsically, and have to rely on my body’s responses to figure it out. Through trials and errors, and many difficult experiences, I had learned to accept and honor a new concept: “My Body & Me,” instead of “My Body v.s. Me.”  This was a novel concept, mostly because of my intrinsic fear of the label of “lazy.”

For a while during my Cerebral Arteriovenous Malformation and Brain Injury journey, I felt like my body and brain were betraying me. It was My Brain v.s. Me, and My Body v.s. Me.

My Brain was literally trying to kill me with my seizures and vascular malformations, including real and ongoing threats of a hemorrhagic stroke on the sidewalk at night as I was walking back to my apartment after classes.  During my middle school and high school years, it tried to kill me via ways of mental illnesses. Now, it was trying to kill me via physical ailments.  The medications I had to take in order to keep everything at bay was also not helping in allowing me to “Thrive” in my situation. Day to day, hour to hour, was all I was able to focus on.

My Body was not allowing me to live like a teenager or college student that I was. Not allowing me to participate in activities my peers were participating in. I couldn’t go out after school. I couldn’t go to parties or drink. I couldn’t take mini-trips with friends. I couldn’t hold dinner parties. I couldn’t do study parties throughout the night with cans of coffee and red bull in the library, cramming for the next exam or the huge project.  I barely made it to and through classes and student teaching, too exhausted to take a shower or brush my teeth many nights. Having my body react to diagnoses like Seizure Disorder, Non-Epileptic Seizure Disorder, Stress-Gait Disorder, Idiosyncratic Hypersomnolence, and Anxiety Disorder didn’t help either, as they were all physically debilitating in their own unique ways.

I felt like I was missing out on my Young Adult Life because of my brain and body.  Everyone told us that College was the best years of our lives, and we better enjoy it. And there I was, missing out on everything those “College Years” had to offer me, socially and professionally, because I was battling depression, chronic fatigue, seizures, and to top it off, ticking time bombs in my brain.

It didn’t take long for me to realize that I had to change my mentality, however. I had to work together with my body and brain; honoring it and treating it well, instead of constantly pushing it to its limits in an attempt to subdue it and get what I want.  Recovery and health couldn’t be rushed, I realized, because the brain and body needed time to adjust and keep up.  I had to Slow Down if I wanted something, not because I am lazy and not doing enough, but because my body and brain needed time to cope.  (I won’t deny that I didn’t – or still don’t – indulge in some pity party from time to time, but it lasts for a fairly short period of time, instead of the brooding I used to do before I was diagnosed, thanks to my stellar memory for everything negative, and my mood disorders.)

If you broke your leg, you don’t run on it to “fix” it. You go to the doctor. You get it patched up. You keep it relaxed, and then slowly rehabilitate yourself to it.  Somehow, when it’s the brain, many of us seem to forget that it’s like a “broken leg.” Instead of taking our time, patiently rehabilitating it, we push it past its limits. If we did what we do to our brains post-injury to our broken legs, we would have a very, very damaged leg.

When I was tired, I needed to take a break, even if the pre-craniotomy and pre-AVM me would have pushed on. When something felt “off,” even if I couldn’t explain it or have a clear reason, I took a break and rested. By listening to messages my brain and body were giving me, I was able to recover myself from the “mini-dips,” and not have the situation spiral out of control to a point where I got seriously ill.

I’d gotten it down to an art, where I could detect small changes and messages my body was sending me in order to give it enough time and rest to recover. I actively advocate to all of my survivor friends to “Slow Down” and “Listen to Your Body,” expressing how important it is to allow yourself to recover and take its time.

Apparently, I wasn’t listening to my own advice.

This week, I worked my regular 9-5:30 job, tutored on Monday, Wednesday, and Thursday after work, and went to the gym on Wednesday (as many of you may know, I am going to San Francisco for a 5K for The Aneurysm and AVM Foundation in May). I thought it wouldn’t be a big deal. I thought I had “recovered” to the point that I could do something taxing every evening, and it wouldn’t be much of an issue, especially because it would just be this week. I had forgotten that my body needed a lot more TLC and attention than “neuro-typical” people, and that I need to listen to its needs and signs.

At first, my brain warned me to stop by giving me a “nightmare” about my life and the confusion and anxiety I lived with for a year or two while I attempted to cope with and accommodate for Executive Function Disorder. I think it’s something you have to experience to understand the horror… To realize that your brain has regressed back to a state that caused so much pain and confusion, having lost all abilities to focus or get work done. I was living in a constant state of confusion and with a sense of being “left behind,” because nothing I did got the results I used to get.

It was like my brain wasn’t really “mine,” and I was living in someone else’s body and mind, trying to control it. But kind of like a die-hard Windows user suddenly using Mac, or an Android user using an iPhone, there were little things that were confusing, and then big things that ruin productivity. Or for any of you car drivers… Suddenly being forced to use a stick shift instead of an auto. I can go on and on with the analogies, but I think you get my gist: it’s not IMPOSSIBLE, but it’s freaking difficult, with all the subtle and large differences.

I woke up, my whole body and joints aching, and exhausted (most of the time when I have dreams, I wake up exhausted).  I dragged myself to work, and felt like I was plagued with the flu or something, my neuro- and physical- fatigue extremely severe. It was difficult to get up from my chair and lumber to get water or go to the bathroom, and I stared at the computer screen, sometimes not even really seeing (I read the same passage about the workings of a Network Switch over and over again without comprehending a single thing). While it wasn’t as bad as it was in the dream, I still felt like I was losing control of my concentration and executive functioning, while struggling to keep myself from putting my head on the desk in my cubicle and take a nap.

By the time work ended, lower abdomen was feeling very strange, and my head felt like it was in a bed of clouds, but I decided I might as well go tutor, and then go home directly afterwards… What’s a couple extra hours of work at this point?  I got home around 9:30 (then had to eat dinner), took a shower, and was preparing for bed, when I lost the ability to walk properly.

I was walking like I was drunk, staggering and swaying, and I felt down a few times after my knees buckled. My Stress-Gait Disorder was suddenly back. Throughout the night, I had a few moments of my Non-Epileptic Seizures as well. Both of these conditions, according to my neurologist and physician, stem from my Anxiety Disorder and Stress.  I was unable to adjust my pillow because I didn’t have enough strengths in my arms or hands to pick up a pillow (it kept on slipping out of my hands), and I had to be escorted back to my bed from the bathroom because I couldn’t walk properly.

They were gone for a while, but suddenly, they were back, And back they were, to tell me I need to STOP and SLOW DOWN. I spent half an hour this morning in bed, wondering if my legs were going to be strong enough to walk on so I can get to work, and if I regained enough strength in my hands to grab things. After a while, I gave up on the notion of calling in sick, and sat up.  After the initial bout of dizziness and weakness, I was able to stand, so here I am, at work, not feeling too terrible, though feeling myself dissociate a little bit periodically. Wishing that my lunch break wasn’t about to end.

While I had a lot planned for this weekend… I am going to have to tone it down and help my brain and body recover and relax. I’m stuck with this one body and one brain for the rest of my life; like any other friend or partner, I have to take care of it.  I hope you are taking care of your body and brain a little nicer than I have been this week, dear readers. Point taken, Body&Brain. I need to practice what I preach.

I’m stuck with this one body and one brain for the rest of my life; like any other friend or partner, I have to take care of it.

TED TALK

The Brain May Be Able to Repair Itself With Your Stem Cells

Through treating everything from strokes to car accident traumas, neurosurgeon Jocelyne Bloch knows the brain’s inability to repair itself all too well. But now, she suggests, she and her colleagues may have found the key to neural repair: Doublecortin-positive cells. Similar to stem cells, they are extremely adaptable and, when extracted from a brain, cultured and then re-injected in a lesioned area of the same brain, they can help repair and rebuild it. “With a little help,” Bloch says, “the brain may be able to help itself.”


#MyBrainInjuryJourney is a series of posts recounting my experiences in the months and years following my Craniotomy to remove my Arteriovenous Malformation, and the resulting Brain Injury. #MyBrainInjuryJourney is just one person’s experience, but I hope that maybe it will help shed light on some experiences some of you or your loved ones may be having.
You can follow the series by going to the #MyBrainInjuryJourney Page.


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What is Executive Function Disorder? #MyBrainInjuryJourney

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6 Months Post Surgery (June 2012), when many of the issues began surfacing.

After my last post (which was the beginning of #MyBrainInjuryJourney project), I was contacted by a few people who were interested in learning about Executive Function Disorder. This post is about this elusive disorder, which could make doing work, getting organized, and being motivated very difficult, and my experience over the past few years in learning to accommodate to it.

#MyBrainInjuryJourney is a series of posts recounting my experiences in the months and years following my Craniotomy to remove my Arteriovenous Malformation, and the resulting  Brain Injury.  #MyBrainInjuryJourney is just one person’s experience, but I hope that maybe it will help shed light on some experiences some of you or your loved ones may be having.
You can follow the series by going to the #MyBrainInjuryJourney Page.

So what exactly IS Executive Function Disorder? It’s actually exactly what it sounds like: “Dysfunction in your Executive Function.” To understand a Dysfunctional Executive Functioning, you would first need to understand what goes into Functional Executive Functioning.

Executive Function is dictated primarily in the Frontal Lobe, which performs “higher level tasks” like organizing, thinking, feeling, and executing actions.

6 Steps of Executive Function 1:

1. Analyze a task

2. Plan how to address the task

3. Organize the steps needed to carry out the task

4. Develop timelines for completing the task

5. Adjust or shift the steps, if needed, to complete the task

6. Complete the task in a timely way

Similarly, according to WebMD, Executive Function helps you to manage time, pay attention, switch focus, plan and organize, remember details, avoid saying or doing the wrong thing, and do things based on your experience (basically learning from prior experiences and changing/maintaining actions taken next time).

I had difficulties with all of the above. You can imagine what may happen once you take away these qualities from a person. I had many ideas on what I should do or what I need to do (ie: Get out of bed and brush my teeth). The Intention was there (“I should brush my teeth, or I’ll get cavities”). The Motivation and the Executive Function Skills to execute the Intention were not (I’ll end up falling asleep instead of getting myself out of bed to brush my teeth; This has cost me a few teeth rots and a couple hundred dollars in the past few years).

DOING the task was not the problem.  I had no issues with brushing my teeth; once my fine motor skills improved enough to brush my teeth, I was able to perform the task. I was just not able to plan my steps and finally Initiate the process of brushing my teeth, which began with “switching” from whatever “task” I was performing (whether it be laying in bed, or reading a book), getting up, walking to the bathroom, and actually brushing my teeth.  If I had to go to the bathroom, for example, because I really had to go, then I will begrudingly get out of bed to go, since it causes severe physical discomfort. At that point, I will probably also brush my teeth, as I am already “in the motion,” so the actual Initiation was completed (by primal need of needing to tinkle).  Momentum is the important key word in my struggle with Executive Dysfunction.  Once I am in motion, I stay in motion. Once I begin, I can complete the task. If the task has not been started, unless I can “switch focus” and start the task, I will probably never get to it.

Sometimes, having Executive Function Disorder is like being on an extremely hilly roller coaster…

… With no way to get off the ride.

The problem is (aside from the fact that the whole situation is a problem), that to anyone watching (or telling us to do something), and worst of all, even to ourselves, this seems like just pure laziness.  (Even now, you are probably thinking, “You’re just making excuses to be lazy!” But really- who wants to have cavities?? They cost money, time, and OUCH!)

This situation proved to be disastrous as a college student. As I mentioned in my previous post, I had difficulties with reading textbooks, doing projects, writing research papers (hell, even researching), planning out my work along deadlines, and organizing myself.  All projects were disproportionately gigantic in my imagination, and I shrank away from anything that would tax my frail organization and planning skills.  More likely than not, the task was left undone, because I could not figure out how to begin, got overwhelmed with the enormity of the task, or could not “break” my current activity and “switch” my focus. (Also, I would simply just forget. My short-term memory was fairly badly affected.)

College & Executive Dysfunction

Trial and error got me an arsenal of strategies and tools to help me get through my work without overwhelming myself.  Once I hit a threshold that told my body that “It’s too much, too complicated, I can’t do it,” my brain sent the signals for an all out anxiety attack to make sure I couldn’t do it.

I also signed up for a DSS 2– the college equivalent of a 504 Plan or an IEP. While I did not use majority of the components that were awarded to me (extended time on exams, exams on the computer, exams taken on different days, scribe), I did utilize extended due dates, and met regularly with my professors if I had issues, so that I could get help with breaking down my assignments and get affirmation that I was going in the right direction.  I also had a computer accommodation, which meant that if the professor prohibited computers, I could still bring one in to take notes (since my fine motor skills were not so fine, and I had difficulties writing).

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June 2012: Diagnosed with Executive Function Disorder, Anxiety Disorder, Stress Gait Disorder, & Non-Epileptic Seizure Disorder.

Three years ago, when I was contemplating getting accommodations, I wrote the following blog post:

I still have to make an appointment for my neurologist to write a letter for filing for accommodations at my university (I guess he doesn’t want to do unpaid work anymore, so he wants to write the letter during appointment time?). I’ve been asking for extended time for assignments because of the Executive Function Disorder, and my inability to focus or complete work, but I’m also thinking about asking for laptop-accommodation for taking notes if I’m in any classes that requires me not to take notes (I know it exists, but I’m not sure how to get it… I guess just asking for it should suffice, giving my reasons).

Since my surgery, it’s been a lot more difficult for me to write (especially quickly) with my hand, and it would save me so much pain and irritation if I could just type the notes up instead of having to deal with handwriting it.

It’s especially irritating because I used to have such “perfect” handwriting, but now, if I’m a little rushed, it’s a hot mess. If I’m fighting for time to scribble things down, I don’t know if I would even be able to figure out what I wrote later on.

I don’t think I’ll ask for it for exams, though. Even though I’m super slow at writing, hopefully it won’t be too problematic with 2 or 3 hour classes (last semester was problematic because the classes were 90 minutes). It’s ridiculous because I used to finish 7 or 9 page written exams in less than half an hour, but last semester, I struggled to finish, and one of them, I had to skip a whole problem (still somehow got a 90% though) because I couldn’t write quickly enough, and the proctor was a substitute, so I couldn’t explain my circumstance.

But I don’t want my classmates getting upset that I, looking perfectly healthy, get to “cheat” on exams (I mean, who with the right mind won’t take that opportunity? Must be crazy to not want to cheat when you have a laptop during exams!) I would assume it’ll get really difficult, too, with having to obtain something that can’t hold notes or will absolutely not connect to the internet, etc., in order to take exams.

Majority of my professors were very accommodating and kind about my struggles (I suppose it didn’t hurt that I had a huge scar across my head), and I did not have to use my accommodations very often.  But when I did, the assignments were not modified in any way; just the due dates.  So I still got A’s on my projects, but I had more time to organize myself and submit the quality of work I would have otherwise, but with a few days or an extra weekend to push it out, to account for my difficulties with getting started or my slow reading comprehension/writing speed.  I used my accommodations rarely, but got them renewed for most of my remaining college years (2 undergraduate and 1 graduate), though by the end, I mostly forgot that I had it at my disposal.

I was also put on Modafinil/Provigil for my Idiosyncratic Hypersomnolence (Sleep Disorder), which also helped with my Executive Function Disorder, as is recorded in my August, 2012 blog entry, titled After a week of being on Modafinil (Provigil):

I have come to the conclusion that when I start talking, I can’t stop, and I get really excited.

Oh wait. Maybe that’s normal.

But I’m a lot more talkative than usual when I’m in the mood.

I think it does give me more energy/makes me more alert/wakes me up, but it’s not like a DANG!!! I’M SO POWERFUL! SUPERSAIYAN! kind of way.

It is much tamer.

I can focus on my work more, and have been able to complete an assignment, and on my way to finishing another (I taught a lesson yesterday, too).  I can make a lot more “decisions,” I feel like, and can cross things off from my to-do list.

I still get very overwhelmed very easily when I have a perception of having too many things I need to do at once, so I still need to use Listography to list out things I need to do so I can cross them out and I can visually see that I’m getting things done.  Listing is also very important because I have a tendency to forget practically everything, so I am left with a lingering sense of “I KNOW I NEED TO DO SOMETHING…” if I don’t put it down somewhere.

This has been the case for the past year or two, but it has been getting progressively worse in the past half year, so Listography and other places where I can jot things down is a life saver (like my MemoPad app on Android… still waiting for Listography to get an Android app!).

After this project is finished and burned into a CD, I can go turn this and another assignment in at the university, and I will be taking a step forward towards my degree, going back to square 1 to restart my 4th year, and make up some classes that I had to drop because stress was giving me too many seizures, and my neurosurgery was coming up last fall.

Many Faces of Executive Dysfunction

Difficulty with Executive Functioning may manifest in many different ways.  When Executive Functioning is disrupted, the person “may have problems with analyzing, planning, organizing, scheduling, and completing tasks at all — or on deadline” 3.

People with EFD may  4:

  • Have difficulty planning a project
  • Have trouble comprehending how much time a project will take to complete
  • Struggles to tell a story (verbally or in writing); has trouble communicating details in an organized, sequential manner
  • Have difficulty with the mental strategies involved in memorization and retrieving information from memory
  • Have trouble initiating activities or tasks, or generating ideas independently
  • Have difficulty retaining information while doing something with it; e.g., remembering a phone number while dialing

Have you noticed any of these symptoms in yourself or your loved one?  These seem like “minor” things, and something that could point to someone just not paying attention, or not thinking things through enough, but it could also be a genuine issue with the workings of his brain. (“Just focus!” “You aren’t paying attention!” “Why didn’t you plan this out better?” “You’ve said that already…” “You’ve told me that story five times already.” “What were you trying to do just now?” “I JUST reminded you about the dishes!”)

There are Two Types of Executive Function 5:

  • Organization: Gathering information and structuring it for evaluation
  • Regulation: Taking stock of your surroundings and changing behavior in response to it

It’s difficult to organize my thoughts, create a plan, or stick with the plan of action. And it is also difficult to reference previous experiences or prior knowledge (

It’s not Gone – Just Accommodated

CYOhWXPWsAAvuS8While I have developed many systems and accommodations for myself over the years (very rapidly in the first few months after my diagnosis and realization that if I did not change something, I was never going to be able to “do” anything in my life), I still struggle from day to day with my Executive Dysfunction. Even while I work full time in the field of Information Technology (IT), and part time as a tutor, I struggle to get out of bed in the morning.

I have many planners and journals that I keep with me, as well as Google Calendar, to make sure that my appointments, schedule, and To-Do lists are always at my fingertips.  Many people pride themselves on their memory. I know how fallible mine is, and so I make sure that my “second,” “third,” and “fourth” brains are all with me at all times.  This allows me to relax, calm my anxiety, and focus on other tasks, daily routines, and work.  I know that even if I don’t remember, what I need to remember is safely written down or typed up somewhere for me to refer to later.

I know that if I go home after work, instead of heading straight to the gym, I will never make it out again to go to the gym. So the night before my “Gym Day” (I have to decide on one and stick to it!), I remind myself that it is gym day tomorrow, and pack my gym clothes, locker key, and water bottle. I often forget my water bottle, which causes a lot of internal strife, as my “Logical” Mind tries to convince myself that it’s okay; I can take a drink from the water fountain, while my EFD Mind freaks out that I can’t possibly go to the gym because I don’t have everything I need, and that at the very least, I need to go home and get it.  (We all know what will happen if I do go home, so I have to kick down my EFD mind and just go without my water bottle.)

Such a seemingly menial and inconsequential detail could potentially set me off and curve me away from my goal of going to the gym once a week.  Thus is my situation today (I forgot my water bottle; I should just really leave it at work so I don’t forget).  Momentum is key. As long as I can get myself to be “in the process” of going to the gym (by going home from work, where the gym is), I can get myself to the gym, have a workout, and get home. If I have to go home to grab my gym clothes, or drop things off, it is highly unlikely that I will be able to “shift” from “I am home” to “I am going to the gym” mode again, and thus, I end up making myself something to eat and vegetating on the couch for the rest of the night.

#MyBrainInjuryJourney Post 2 out of X.

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Notes:

  1. “EXECUTIVE FUNCTION DISORDER” (ADDitude)
  2. Disability Support Service: If you are in college, and think you might need some accommodations and modifications to manage your schoolwork and exams, you should check with the Student Aid Office to see if DSS may be available for you.
  3. “Executive Function Disorder” (ADDitude)
  4. “Executive Function Fact Sheet” (LDOnline)
  5. “What is Executive Function?” (WebMD)

My Lost “Motivation.” #MyBrainInjuryJourney

Few days after the craniotomy (December, 2012).

Half a year after my craniotomy, I stopped taking my seizure medications. For the first time since middle school, I was no longer taking in prescription pills, and we all thought this was a new beginning in my life. AVM Free, Seizure Free, Drugs Free, and on an Express Lane to Recovery. Little did we know that the “road less taken” was a windy and twisted one, filled with black ice and invisible pitfalls.

#MyBrainInjuryJourney is a series of posts recounting my experiences in the months and years following my Craniotomy to remove my Arteriovenous Malformation, and the resulting  Brain Injury.  #MyBrainInjuryJourney is just one person’s experience, but I hope that maybe it will help shed light on some experiences some of you or your loved ones may be having. You can follow the series by going to the #MyBrainInjuryJourney Page.

If you have any questions or comments, please feel free to leave a comment below.  Also, please take a moment to look through My Photographic Journey of Brain Injury Recovery post that I made last month, if you have not seen it yet, to get a better grasp of my experiences visually.

One of the biggest roadblocks in my journey for recovery was my eventual diagnosis of Executive Function Disorder.  I had a lot of reactions as I began decreasing my seizure suppressant dosage, in preparation for weaning off. Since I had a request about sharing my experiences, I am going to share things I find in my blog, to add to the “authenticity” of the experiences.  At these points, I was experiencing the symptoms, frustrations, and anxiousness as I attempted to make sense of my symptoms and brain.

I ended a particular blog entry written on April 12th, 2012, where I mentioned my brain’s reaction to the weaning off from my seizure medication, with these words:

6 Weeks Post-Surgery (January, 2012).
6 Weeks Post-Surgery (January, 2012).

Usually I like to keep things positive here, but I want to document changes in case it is significant.  Since I don’t know what to make of this sudden mood/tension change, I want to at least put it down that it existed. 
Is my brain “waking up,” now that I am on lower dosage of the medication (that almost killed me last semester)?  If so, I wonder how I will be in June, when I am able to go completely off this.

How insightful I was back then…! I had no idea what was going on, but I had an “inkling.” And that inkling came true, once I was completely weaned off. Thanks to my impulse to log things, even if it’s not positive, I am able to share my thoughts with you today, as if it happened only yesterday.

Four months post surgery, I had decreased my Keppra dosage to half (500mg), since I was seizure-free for four months.

I feel like my brain is often hyper alert, I feel a lot of things, I have the urge to say a lot of things, make a lot of statements, and generally care about things that I don’t really need to be caring about.

I don’t know if this is good or bad.  Especially since this new “hyper alert” status isn’t really helping me do homework- just helping me procrastinate more efficiently by finding me more things to do other than actual school work. It’s emotionally draining me, and I can’t get school work done.

My 4-Months-Post-Surgery Meeting with my Neurosurgeon.
My 4-Months-Post-Surgery Meeting with my Neurosurgeon (April, 2012).

I didn’t know what I was experiencing at the time, but it was the beginning of my journey with Executive Functioning problems, and everything related with it.  I had no idea at this point that such a disorder as “Executive Function Disorder” existed.  I was just confused, worried, and having difficulties processing all of the sensory input thrown at me from everywhere.

As a senior in college, I was suddenly facing the fact that I was unable to focus long enough to read a paragraph or write a sentence.  Meanwhile, papers were due, projects were due, and exams were coming up regardless of my new-found difficulties with prioritizing tasks, figuring out how to “decompose” assignments and projects to make them manageable, and dealing with crippling anxiety attacks.

Finals Week was very difficult for me, as I grappled with concentration and attention issues.  Because until I began decreasing my medication, things were relatively stable and uneventful (though I was experiencing issues, definitely, but I was able to chalk it up to the fact that I just had my brain sliced open and poked at).

It’s been over 5 months since my surgery, and I have no idea why this is happening now.  I’m kind of afraid of going off my seizure medication next month, if this is somehow related to my brain…

A month later, I was diagnosed.

While I was glad to finally get an answer to my difficulties, I was not comforted by the way it was presented to me.

It only reinforced the self-loathing I had inside myself: I was continuously frustrated by the fact that I had ridiculous difficulty doing the most menial tasks, like brushing my teeth or taking a shower. Reading my history textbooks were almost out of the question, and yet I could read and research random disorders or psychiatric conditions that caught my fancy.  I could not even begin a project if I didn’t have the “right notebook” or the “right pen.”

I was distracted so badly by extra tabs on my desktop that I had to download and install an application that allowed me to have “multiple desktops” so that I could have a “clean” desktop when I was doing work (and didn’t want to get rid of websites I wanted to bookmark, or projects I was working on).  The discrepancy between my ability to focus on things that interested me, and things I “should” be focusing on, further made me feel like I’m just not trying hard enough.

Here’s a blog post from the day I was diagnosed with Executive Function Disorder by my neurologist (May 21, 2012; 5 months post surgery):

With my mom’s and my accounts on “me” for the past few months, my neurologist decided that it’s likely that I have “Executive Dysfunction Syndrome,” possibly triggered by the fact that a part of my executive functioning was disrupted when I had the surgery on my left frontal lobe, which is apparently where motivation/intention are controlled.

Somehow, it does not make me feel any better to know that there’s a label for this, and feels like it’s just pushing for me to make more excuses about myself and my inability to finish homework on time (or at least that’s how I feel like people would feel if this ever comes up).

I feel like I’ve just been slapped across the face with a folder with the name of the syndrome while being told, “Here’s a label for you- Lazy and unmotivated to do your work and only want to do things you like doing. Slacker.  You have no self control and lack the ability to do what you need to do because you aren’t motivated enough.”

I knew all that without a label that tries to make me feel better about it by saying it’s my brain’s fault, not mine.

The neurologist said, “You don’t have Attention Deficit. You have Intention Deficit.”
Meaning I don’t have ADHD/ADD (I know I don’t), but just deficit in intention. I don’t know how else to take that other than as, “You are a slacker. You don’t try hard enough.”

I talked to him about the problems I was having (wrote about it last week during finals- about not being able to open my eyes for a few hours every morning, the EXTREME dizziness, exhaustion/fatigue, etc.), and he told my mom that my puffed up eyes (my mom was the one to see this during one of the weekends I was home a little while back, because I obviously can’t see for myself if my eyes are puffed up or not) and “not being able to open them” was just me being lazy.

Lazy.

They hurt.  That’s why I couldn’t open them.  I don’t understand how he could have some syndrome about how “You can focus on things you like but don’t do the work you need to be doing,” but call physical symptoms of SOMETHING (I attributed to stress) as “lazy.”  If I could open my eyes, I would have.  Especially since… You know… It was finals week and I kind of needed to do things.

I just feel a lot more irritated and uncomfortable after the neurologist appointment than comforted that there’s a “syndrome” or “disorder” out there to describe my conditions.

Also, apparently I need to retrain my brain so I can see the “whole painting” instead of just “half of the painting that has my favorite part and interest me.”

In other words, I’m doing what I’m not supposed to be doing right now- researching and writing about things that interest me instead of doing my school work/real life importance things.  So… I guess… I should get onto the “ACTUALLY IMPORTANT THINGS”…

This is really irritating.

10922450_10203701225950877_1227903726097777314_n
Post-Craniotomy scan (December 2011).

Believe it or not, it was only around this time that my family and I realized that I had sustained Brain Injury.  We had not realized until then that all of these issues could be linked to the fact that my Left Frontal Lobe was substantially damaged in the process of extricating the AVMs from my brain. Only at this time, was I able to look at my brain scan and actually understand what the black high-density area meant.

We finally realized that my Executive Function Disorder was a serious issue that won’t “just go away with time.”  We realized that it was a Brain Injury, and not a “phase.”  In the upcoming months, I was diagnosed with Anxiety Disorder, Non-Epileptic Seizure Disorder, Stress-Gait Disorder, and Idiosyncratic Hypersomnolence as I was completely weaned off my medications.

#MyBrainInjuryJourney Post 1 out of X.

 


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