5 year update:
As I celebrate 5 years with a clear head (post brain surgery), I just want to say that it just keeps getting better. I figured the sweet taste of life after a brush with…my mortality, would fade over time. One year, two years, 3 years…4 and now 5 years later. I am here to say that after 5 years, I feel more fortunate than ever: it is still a beautiful gift to get up and be cognisant in this world. It doesn’t hurt that everything in my life has just kept getting better. My family grows, my love grows for the people in my world ~ I’m a lucky guy ~ and today I appreciate this, all of it, more than ever. In retrospect, I can’t imagine my life without this life-altering experience known as a craniotomy & I am thankful for it. It feels amazing to say this because I would have never believed this to be the case when I was 6 months post-op: struggling to write my name. Fortunately, it is true ~ today, I am better than ever.
3 Years Later: an update
I felt a need to weigh in…now that 3 years have passed…to offer an update. This is the happy ending that we all hope for. I must admit, while I was skeptical at times, my doctors were pretty much correct when they said “expect to make a full recovery!” I say “pretty much,” because they had speculated a recovery timeframe of 6-12 months, and this simply wasn’t the case.
12 months following my craniotomy, I was still playing brain games to help remember people’s names and practice elementary math problems. At 24 month, I felt good but I was still weak and forgetful. At 36 months, I run a successful photography business; which is exactly what I set out to do prior to my diagnosis! I even do my own taxes (deserved brag). Professionally, I feel I have met all my goals and then some!
And on a personal note, I’ve come a long way during the last 3 years. I’ve learned that my progress was never meant to be measured on a scale of how nearly I felt to my own “normal” (or, what I was like before). Brain surgery is a life changing experience; such an experience will transform a person. In my case, this experience has transformed me into a better person. When faced with a threatening diagnosis and given an opportunity to live, I would advise one to seize the opportunity like it’s a gift. Because it is. The goal is not to get back to normal. The goal is the same as it ever was: to thrive.
I’ve experienced life in a bleak form ~ existing in a wheelchair, unable to remember the date: even the year. It’s one thing to become physically disabled, it’s another thing to experience a mental handicap…combining the two is thoroughly deflating; it weakens one’s defense from hopelessness. I feel as if I’ve experienced a “day in the life” such that I could fully appreciate the rest of the days in my life. This is one experience I will never forget.
Original post below:
If I were to write a book, it’d be called something like “what to expect when you’re expecting brain surgery.” I’m not saying it’d be a best seller…but I’d read it! It certainly would be nice if there were something, some sort of guide, to prepare one about to endeavor into…brain surgery. There are books on “brain injury,” and I’ve read a few after the procedure; but they are all so scary, and there wasn’t one that seemed to apply specifically to my situation. Therefore, I went into my craniotomy ill-prepared…or maybe it would be more accurate to say: I was not sufficiently scared. Fortunately, it was my ignorance that made a very big decision: whether or not to undergo brain surgery, easy. Therefore, without much thought, I went for it. And clearly, I survived. 18 hours of surgery. It was nothing short of a miracle. Here is my story.
Nov. 24. 2011: Shakin
I awoke in Sierra Vista hospital bed in the middle of the night, which is less than 1 mile from my bed at home. On this particular evening, Heather had called some sort of fancy cab (am-bu-lance), after she quickly diagnosed my unconscious shaking as a seizure (she is a very good nurse). I recall little of the entire experience…but it was brief, and having a seizure is an exhausting experience. Within 3 hours of being admitted to the hospital, I was back in my same bed, with one simple change: I was now acutely aware of the potentially lethal malformation in my brain…it’s a good thing I was tired.
The Facts (this is all pretty dry)
The CAT scan I underwent in my brief visit to Sierra Vista had revealed an Arteriovenous Malformation residing in my left parietal lobe; put simply, an AVM indicates a direct connection between an artery and a vein without the typical capillary system to regulate the pressure difference between these two zones. Traditionally, arteries transport pressurized blood, while veins simply drain blood. In the case of an AVM, the vein must drain much more blood than it’s meant to (which is a bad thing); also of note, AVM’s have a tendency to hemorrhage…which is a very bad thing.
Dr. Alois Zauner
The week following my rude awakening…or CAT scan diagnosis, I was scheduled for an angiogram at Cottage Hospital in Santa Barbara. Apparently, no neurologist in San Luis Obispo will touch an AVM. On Friday, Dec. 2nd, I arrived at Cottage Hospital early. I spent the morning prepping for my procedure and listening to each nurse gush about “Dr. Zauner, the master of brain surgery.” His reputation was paved of grandeur, as if he were larger than life…”brilliant” or “magnificent.” In one sense, it felt as if I were on a college tour and this institution was vying for my letter of intent. In reality, I was the one who needed them, desperately.
I was laying a gurney just outside the operating room, when I met Zauner. It was cold, hospital cold. Zauner was wearing scrubs with a cap…he towered above me because I was laying horizontally, 32″ above the hospital floor, but I could tell this man was not tall. Austrian born, he spoke with just a subtle accent. He was humble yet confident; I liked him (although, that could be attributed to the drugs I was on). My family liked him too, and they were sober…very sober. Zauner explained what he was about to do: inject some dye into my bloodstream and take a look at how my brain handled it (how it flowed). I said, “let’s get this party started”…or something that would help me get out of that cold room more quickly…I believe I was a bit nervous, and cold.
After the angiogram was completed, Dr. Zauner returned to explain to me, in his humble nature, that he could indeed relinquish me of this unfavorable circumstance. In that moment, I made what seemed like a very simple decision: to go thru with it.
Jan 3. 2012: Embolization #1 (of 3)
In gist, an embolization is in a procedure in which glue is injected into a malformation in order to clog the opening, effectively shrinking the malformation in size: making it easier to remove. It’s like blocking an entrance to a cave…a deadly cave…where bad things live. Where previously 50% of the blood in my body flowed (for no apparent reason) over the course of a few hours, that blood was partially diverted to other areas. The night following the procedure, I had the worst headache of my life…I responded to the nurse’s question: “on a scale of 1 to 10, it’s a 10, I’ll let you know if that changes.”
Jan. 17. 2012: Embolization #2
Not as bad.
Jan. 30. 2012: Embolization #3
Feb. 1. 2012: Craniotomy
(fancy for “brain surgery”). A significant part of my life that I will not remember, but I’m sure this experience is one my family would love to forget. We were all told to expect a 5-6 hour surgery, especially because the 3 embolizations had done much to shrink the AVM. Unfortunately, what remained of the AVM was stubborn and far reaching…Dr. Zauner took his sweet time. 18 hours of sweet time. I’ve heard many people’s rendition of what went on during that 19 hours: phone calls, text messages, crying, small victories…hope.
Following the surgery, I remained in an induced coma for nearly a day. Following that day, I was completely out of it to the point where I remember nothing for a total of ~3 days but I’ve been told some fairly humorous stories about the things I’ve said. I believe my physical appearance was “unsightly” but to my chagrin, there were no photos taken.
As it turns out, the tough thing about brain surgery is the aftermath; whilst the brain is essentially re-wired. This is a time where patience is a virtue, as you question whether you’ll ever be able to remember a new person’s name, the time of the day or what it was you were thinking about seconds earlier. Now, you’ll look at a question whose answer you have known since you were 10 years old, and you struggle…and you struggle with that struggle.
I was given diagnoses of 6 months to one year before I’d feel back to ‘normal’. Not once did someone say, “you’ll probably never feel quite the same,” which is the undisputed & honest truth. There’s a reason that it’s called a Traumatic brain injury. However, if someone were to be brutally honest with me prior to the surgery, maybe I wouldn’t have gone thru with it…maybe I would have passed on surgery and continued to live, as I had for nearly 30 years, with a ‘time bomb*’ in my brain. So, maybe it is best to be ignorant going into such an experience as a craniotomy.
I spent 9 days here. It was a long 9 days, and I remember much of it…which is saying a lot for a lad who had a terrible memory. I awoke without feeling in my right side…complete numbness. Meanwhile, any brain function that took place in the left side of my brain, had been put on pause: all concept of time was lacking and my ability to operate electronic devices was vaporized…stuck in airplane mode. OMG.
I had procedures and scans and battled two colds and it was really terribly awful nearly the whole time. Anyway…
Feb. 9th. 2012: A new hope.
Dr. Bryson. My savior. She walked into my room one day after I left the ICU. She had a professional demeanor and explained that she ran a rehabilitation center across the street…and I wanted in (or out of the hospital, really). We went thru a few exercises, which I’m quite sure I failed miserably at. They were simple addition questions, and easy word problems…but they were impossible. My brain was busy healing…much too busy for word problems. The next day, I was wheeled outside, loaded into a van and driven across the street…I got a lot of that kind of treatment. It was expensive.
Feb 10. 2012: Rehab.
Despite my poor performance in the ICU, they let me in to rehab. Each day after that, I got significantly better. One day I practiced walking, two days later, I practiced running. I even practiced swimming. It was essentially a resort; all I could eat, room service & personal training: occupational, physical & speech therapy, specifically. I played video games & ping pong, arranged flowers, and hung out with people who had also fallen victim to some type of an unfortunate & traumatic injury. Rehab really was the perfect name for it…except, there wasn’t any type of sharing session, which would of been nice. “My name is Blake, and I am a shell of my former self.” jk, a little.
Kathy was one of the many angelic people I met over the course of my surgery and recovery. She offered to take me on a field trip to the beach which would mark the first time I had left that one block radius surrounding the hospital/rehab center in two weeks. Her approach to rehabilitation was casual and she never perceived barriers that might hinder my recovery; two things I very much appreciated. Kathy was a dog owner that took her dog to the beach and let him run…and she let me do the same. In fact, when we arrived at the beach she admitted “this is where I take my dogs to run!” (and this is what made my previous analogy very easy). The next day, we went on a hike and she dared me to jump on the jungle gym or walk off the trail a little bit; I’ll admit, it felt a little childish but so did my coordination…it was perfect. When she discovered I was a photographer, she said, “bring your camera along tomorrow!” so I did.
These images were some of the first that I shot after undergoing brain surgery. I found the most difficult part of shooting at that time was composing my shot; this was not because I struggled with the very subjective art of composing an image (my creative right brain was intact), but rather, I couldn’t hold the camera still. The once steady bipod that was myself, was no longer reliable; this comes as little surprise because I was had only been granted free reign to walk on my own (ie: get out of my wheelchair) about 2 days prior. I was shaky, literally, and too unstable to take a clean picture. But I worked on this, and over the course of an hour I was able to compose some nice shots. That’s what I call “photographic rehab.”
Not to liken rehab to jail, but toward the end of my stay, I envisioned driving away from Santa Barbara like it was San Quentin. At Cottage Rehabilitation Hospital, they called it graduation…seriously, there were diplomas (see Lavelle clutching his above) and speeches and everything. It was kinda sweet. However, every minute I endured was torture, as I waiting for noontime to roll around…when I could jump in the car and return to my life, 90 miles away in SLO. Once I sat down in the passenger seat and the car switched into drive, I relaxed. I requested that my ‘driver’ take the scenic route: taking detours to drive down a rustic country road. I requested a stop at a winery to drink in the sunshine & freedom (because I couldn’t drink in the purple stuff ~ but check out the pic below and you’ll see I didn’t need it!).
The recovery after I’d left rehab was tough, the toughest. The healing process slows down, it decelerates. When I began my rehabilitation, in one day I would make such measurable progress that I would pat myself on the back. One month later, I was trying to ascertain whether the feeling in the toes on my right foot was at 30% of normal or 35%. I found it crucially important to measure progress, in some way. Whether it is how far I had walked or ‘how much (you) bench’ ~ I believe it is important to have some numeric indicator of progress to believe that “(you) are getting better.” After all, this is, by definition, recovery.
There’s no moral to this story that I can tell you. It’s just, my story. It felt interesting enough to share, and I feel like it may call to somebody out there who is going thru something similar to my ‘ordeal.’ However, if there were one message I’d like to leave you with, it is this: living is beautiful.