surviving my traumatic brain injury

In this talk Experience Architect, Rok Salaysay discusses the phases of crisis and will go over coping skills based on her experience as a traumatic brain injury survivor. Transcript below!

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Catching the Curve Ball and Surviving the Unpredictable Journey of Life. Hello. Today I want to talk about the different stages of crisis through an experience I had and the knowledge I gained after I got through it. Let me first offer my personal definition of crisis, which is an unexpected life-changing event with potentially negative results. I’ve broken this down into six phases and it’s my hope that you’ll have some insight on how to deal with your own crisis when one happens to you because if you haven’t had one yet then you really haven’t lived.

We begin with phase one, events unfold. Some of you are familiar with this story because you were there at Labs at the time. Easter Sunday, 2015. Before this, I had been experiencing three days of really severe headaches that were bad enough to wake me up in the morning at about six o’clock. The night before my thinking had been very disoriented and my speech was all slurred, but I just assumed it was side effects from this antibiotic I was taking for a sinus infection. So, of course, I ignored it until that Sunday morning when my right leg was experiencing some pretty weird weakness so I thought that was not normal. So I told my husband Kerry and my mom about it and they said, get to the emergency room.

So we went that afternoon to Royal Oak Beaumont. There I listed my symptoms to the doctor and he did a quick neurological exam to make sure I wasn’t having a stroke. And then after that wasn’t conclusive, he ordered a cat scan of my brain. So about an hour later he came back with the results. He said the scan revealed a large gray mass that was crushing parts of my left frontal lobe. So I have not brought that image because it’s like a nine-inch nails album cover, but I did bring this. He said it was about the size of a baseball. Now I think it would have been a lot more fun if he had instead compared it to this baby bunny. Sorry, I moved. Why don’t all doctors do this? So I think that would have been a lot easier to take than this.

He went on to explain that it was very likely a meningioma, which are 98% benign and the next steps would be to have an MRI to get more details. Then he said very kindly, “I’ve notified the brain doctors and someone will follow up with you in the morning.” So needless to say, he left me and Kerry in a bit of shock, which brings us to shock and disbelief. Yeah, so large gray mass, brain doctors, what the heck is a meningioma? So when someone in the medical profession mentions mass, you automatically just go to the worst place. So I was thinking, “Great, I have brain cancer. This is how I’m going to go.” Because I already knew a couple of people in my age group that had passed away from some kind of cancer so of course, I thought, “Yeah, but I’m sure I’m next to die before I’m 50.” And he said that this thing was 98% benign, but what about the other 2%?

So before I could think more terrible thoughts I said to Kerry, “Let’s not panic. Let’s wait until we have to.” And he agreed we would wait until we had more information, which brings us to, you will be in a brief state of knowing nothing. So you get information and you ask questions. The next morning after my first ever MRI, which was at the crack of dawn, so I was barely awake to enjoy it, the mass was confirmed to be a meningioma, which is a slow-growing tumor located in the meninges, which is the membrane surrounding the brain and the spinal cord.

So I was told I would need to have surgery to have it removed the next day. And the official medical term for this type of surgery is craniotomy. So we asked about things like recovery time and when I could drive and when I would be able to go back to work. But they give us a general answer, every case was different they told us. And we wouldn’t know any more until after the surgery when she could get a good look at what we’re dealing with because they weren’t sure if it was one tumor or two. Fortunately, it was located in a very operable area, which was very polite of it. And that’s pretty much all we were told other than expect things to go well, it was a routine operation.

However, having never had a craniotomy, I was a little anxious the night before. So I found myself wondering if during this routine procedure the surgeon would suddenly sneeze and erase all of my high school memories of my senior year, which was well, good riddance, but … or what I wake up and be an entirely different person with perhaps a fondness for yellow or Celine Dion and would I even be able to tell the difference? So I thought a more levelheaded approach would be to ask myself some questions. Did I have any experience with what was happening? Not really, but I did have some experience with hospital stays and also surgery so it wasn’t a lot, but it was something.

My next question to myself was, was there anything in my control? And the only thing in my control was my attitude. I had to stay positive, I had to keep my sense of humor and I hoped it would help family and friends stay calm for me, particularly my husband who confessed to eating Xanax like Chiclets. Oh good, you know what Chiclets are. So for example, I sent an email to everyone at Labs with the subject line, “The best excuse for avoiding opening day,” which was a brief rambling update ending with, “Ask questions now while I know how to type.”

And for some reason, I kind of giggled at the things my neurologist was telling me, like the tumor had grown so large that it had attached itself to part of my skull, which would have to be removed and replaced with a titanium plate. So, of course, I was like, “Great, I was going to be aboard. Resistance is futile.” So this experience had gotten like so far in the realm of things that happened on bad soap operas that I just had to laugh at how ridiculous it was getting.

My last question to myself was, is there anything positive that I can clean to other than the prospect of taking a really cool pain medication? Yes, absolutely. I was in very capable hands. The neurologist that had taken my case, this person, Dr. Holly Gilmer, was highly respected and she had attended U of M and Harvard. In fact, anytime we mentioned her name … Oops. Uh-oh, how do I back it up? Oh, dang I ruined the surprise. Okay, pretend you didn’t see that slide. Anyway, Dr. Holly Gilmer, she was highly respected and had attended U of M and Harvard and in fact, anytime we mentioned her name, Beaumont’s staff was highly complementary and everyone told me how lucky I was that she was my surgeon.

Secondly, I had the love and support of my husband and everyone was sending all their positive thoughts and healing energy. Thanks, Bill. Lastly, Kerry had stumbled upon a site called 20 Things To Expect After Brain Surgery, which was probably the most helpful thing we came across. It was written by Geraldine DeRuiter who posted this on her blog, The Everywhereist, after undergoing her own surgery. And Kerry read me the whole list the night before and a few times after. It was very comforting, kind of like reading me a bedtime story.

So I had some helpful information and some positive things to go on. At this point, cognition and speech were fading rapidly and I was really eager to get the surgery over with before the next phase. I’d like to show you what my surgery was like. Everyone take a deep breath after I count to three. One, two, three. Exhale. Halfway through the question I had for the anesthesiologist, I dropped into a black ocean, into an eternal moment of still darkness. A ghost with no thought, no emotion. I resurfaced in ICU, but it wasn’t over yet.

Admit you need help, don’t be afraid to seek support. Any major operation is life-changing, but brain surgery is definitely its own category. Obviously, it had been a success though I couldn’t taste for about three weeks and I had minor aphasia or trouble communicating and I had to deal with another unknown. These physical things would clear up eventually, but it was the emotional recovery that I wasn’t prepared for. I was a traumatic brain injury survivor. You can’t see our injuries.

Inside there’s a lot of quiet, struggling with our deficits or our cognitive impairments and trying to appear normal to everyone. On the outside, it did appear that I was back to my old self though I kept my head covered in public until my hair grew back. Inside I was frustrated. I remember trying to explain our apprenticeship program to my twin brother and I had to start three times and eventually, he said, “You know, let’s just pick this up later.” I was impatient with myself and just angry with people who just didn’t understand what I was going through, who were just as bewildered by what had happened to me as I was.

So I struggled with speaking and comprehension and simple everyday conversation. I was sensitive to crowds and noise, high ceilinged rooms, bright overhead lights at Costco, weird things like leaf shadows on the ground at night and I was prone to overstimulation, which caused me great anxiety and no one understood. So I decided to seek therapy and it was a very, very tough decision because I cringed at the thought of being vulnerable in front of a stranger, but it was a choice between suffering quietly or getting immediate help. My speech pathologist referred me to a social worker at Beaumont who had experience with traumatic brain injury patients and her name was Anita and she was like hip grandma and she was super easy to talk to. She had an explanation for every question that I had in every new situation that came up and it was probably the best decision that I could’ve made for myself. So when you don’t know how to deal with what’s going on, it’s okay to get help.

This leads us to phase five where you learn from what happened, turn fear into curiosity. So I needed to understand what had happened to me because if you understand something, you’re less afraid of it. Two weeks after my surgery when I was allowed to look at a computer again, Kerry revealed where my laptop was hidden because he knew I would look for it, and I started Googling everything, meningiomas, brain tumor recovery. I visited chat rooms of survivors, I even forced myself to look at craniotomy images very briefly and also the surgical tools that were used, again, very briefly, but I did see the bone saw.

And I shared an odd but not unpleasant experience with my social worker. It happened the first few days I was home from the hospital. I had the sensation of my consciousness being drawn to objects in the room and I could feel where everything was with my mind and I felt like a ninja superhero with hyper-awareness. So she referred me to a book called Stroke of Insight by Jill Bolte Taylor. She is a neuroscientist who had the unique position of having her own stroke and nerding out about it while it was happening. So in her book and in her amazing Ted talk, she describes a similar experience to mine.

I was also curious to know if this state could be accessed at will. In the last chapters of the book, she writes that it can be done through various meditation practices, which led me to look into transcendental meditation. So I coin crafted a course in Troy and have been practicing for about four years. To continue, I learned about neuroplasticity, which is the brain’s way of constantly, constantly adapting and restructuring itself after new experiences or after being damaged and it also happens as we get older. It will literally build new paths and find a way eventually to get back to normal, depending on the extent of the damage of course, which made me feel hopeful about the brain cells that had been crushed by the tumor. And 2015 and seem to have a neurological theme going. A friend told me I was probably experiencing the Baader-Meinhof Phenomenon, or the brain’s tendency to pay attention to patterns, but it was hard to ignore these coincidences.

In May I heard an interview On All Things Considered with English neurologist Henry Marsh, and he had just written a memoir called Do No Harm. So I read the book and I gained a better understanding of the often surreal aspects of being a brain surgeon, especially when he writes that moving through thought itself, through emotions and reason that memories, dreams, and reflections should consist of jelly is too strange to understand. I also read about Oliver Sacks, another famous British neurologist who had passed away that August. I read his autobiography, On The Move, A Life is well as other books about bizarre neurological cases he was involved in.

And also Inside Out was released in June by Pixar, if you remember it was a movie that took a humorous look at how emotions and memories affect our behavior. So basically to quote Oliver Sacks, I learned that the brain was the most incredible thing in the universe and it still remains a mystery. Scientists still don’t understand how it works. There are about 86 billion neurons all working together simultaneously to pick up a fork, write code, play music, breathe, dream, coordinate events. It’s a miracle that we carry around with us all the time.

So at last, move forward, have faith in yourself. I found all of this new knowledge empowering. So I finally felt ready to start dealing with my speech problems. I had minor Broca’s aphasia. And the Broca’s area is located in the left frontal lobe of the brain and it’s partially responsible for the production and comprehension of speech. I knew what I wanted to say, but many times it wouldn’t come out or I couldn’t find the word. It certainly wasn’t the worst thing that could have happened to me, but it was scary to not be in control of this basic ability that I used to rely on without thinking.

As mentioned, I also had trouble understanding what was being said to me, but it helped when I was right in front of the person or if they spoke fairly slowly or I’d ask them to repeat themselves a few times. But I kept finding myself in situations where I needed to think and communicate quickly and my brain wasn’t up to speed yet. And I was done with my speech pathological visits so I started coming up with my own strategies. I began by picturing what I wanted to say, which worked most of the time, but I had good days and bad days, which is the nature of recovery, but I kept practicing the strategy anyway. I then force myself to be in speaking situations. I offered to do the first interview tours, then I did a lightning talk, then a couple of mentorship demos, then eventually a longer presentation for our DNI group.

So over the last few years, I’ve gotten a lot of support from people here and I’ve slowly been building strategies to successfully deal with general conversation in public speaking. Though on some days, like everyone else, I don’t really feel like talking much, but in my mind now it’s perfectly normal, which brings us to today. Here I am fully recovered and giving a LabsCon talk. Survival is hardwired in all of us. Lessons I’ve described are not new concepts but hopefully will serve as a reminder that we are all capable of dealing with adversity and we can catch any curve ball the universe throws our way. Stay calm, think it through, don’t be afraid to get help, turn your fear into curiosity, move forward, but most of all expect to be transformed as I have been.