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.
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.