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.
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.
#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 ISExecutive 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.
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.
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).
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 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.
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!”)
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
While 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.
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. ↩
My surgery was on December 7th, 2011. I was 22 years old, a college senior, and had closed my fall semester early after my 3rd and final Grand Mal Seizure. The fact that it has been 4 years already baffles me still. It seems like just last year that I was lying in the hospital bed, throwing up blood in the ICU.
In almost all aspects of my life, I don’t think I would have been where I am now had I not been diagnosed with AVM, and had brain surgery. It’s amazing how your whole life’s trajectory could change in a span of half a year. Before my first grand mal seizure, I was finishing up my 3rd year in a 5-year Master’s program to become a Special Education Teacher. While I still got my M.Ed. 3 years later, I now work in IT; a field I would never have imagined myself in until a few weeks before I actually started.
In the past few days, I have been browsing my Tumblr (OneMoreTi.me) I kept during the days surrounding my surgery. Since I am often asked by new members of Burgundy for Life what the recovery process was like, I decided to do a photo-journey to commemorate my 4 year anniversary. Please join me from two weeks before my surgery!
Hover over the photos for descriptions, and click on the photos for a larger version (slideshow). Blog continued below photos.
As of December 7th, 2015, I am Four Years AVM Free. Many days, I feel like I am treading in water or being pushed back by the currents. However, going through photographs and blog posts from the past 4 years of my life have made it apparent that I am indeed moving forward, even if in baby steps.
Over the past few years, I have been diagnosed with over a dozen disorders and conditions. Some went away after my surgery, some came to be because of the surgery (and the brain injury that followed), but all in all, they have been bundled up as obstacles that make my life a little more complicated, but manageable with accommodations.
Instead of fighting against and rejecting my “disorders,” I have learned to “accommodate” them, integrating them into my life alongside various accommodations and modifications in my lifestyle, outlook, and tactics. Since accepting them as part of me (that needs a little help), my life has become more peaceful, allowing me to remain grateful and content about my life.
As much as I have learned to compensate over the years, I still have times of lapse, where the stress and fatigue is too much, or I didn’t see my warning signs in time. I hope that while living with myself for the next foreseeable future, I will learn to better manage my fickle brain.
It is not often that you would see “Seizure” and “Thankful” in the same sentence, but I am truly thankful for that first Grand Mal Seizure in April 2011, which alerted us to the fact that there was something not quite right in my brain. Had it not happened, a Stroke would have probably been unavoidable, and I may not have been here to write write this post. I am also greatly thankful for the community that banded together to help me through the difficult ordeal. People who had no reason to help me worked together to help, and for that, I owe my life.
I have many goals and ambitions that have developed over the past few years, and I hope that the experiences I’ve had in the past half decade have equipped me well for the challenges of the future.
“Hardships often prepare ordinary people for an extraordinary destiny.” – C.S.Lewis