Everything that happens to me is the best possible thing that can happen to me.
I read this sentence in Zen and the Art of Happiness before surgery, and it has been a recurring thought the last week. I love the above sentence for it’s clarity and simplicity.
I’ve decided to not keep my health struggle a secret anymore because brain vessel malformations should be spoken about. I’ve kept this secret through the years partially because I’m a private person, and partially because it sounds really scary. My condition is fairly rare, and can be life changing for those affected. It can also be something that can be un-detected for a lifetime.
I recently had brain surgery to remove a deep cavernous malformation in my left thalamus. It was definitely the hardest decision I’ve ever made, and I’m sorry for keeping many of you in the dark about my sudden disappearance. I had to make the decision quickly, which made it even more challenging.
I returned to my parents’ house Friday, after spending a week post-surgery in a physical therapy intensive recovery hospital. I’m feeling really optimistic about recovery, and I’m stoked to be able to do my own thing. I’ve already made a peach crisp, and some fish tacos (with help and a mess). For those that know me well, this means that everything is gonna be okay.
I wrote the section below as a way to calm my mind before surgery. I recently decided that a public account of recovery would be not only therapeutic for me; it would also serve as a useful resource for people who are in a similar situation to my own. I plan to mostly use this as a platform to share resources that aid me in my recovery. Meditation, physical therapy, adaptive yoga, and adaptive cooking have already proven to be useful in my recovery. I’m finding more tools constantly, and I am grateful for the resources available to me.
I’m thankful for my amazing parents, and a few close friends that have helped me through the emotional and physical challenges. There is no way I would have made it without them.
And before you ask what you can do for me, let me tell you what you can do: Recommend great books, yoga videos, meditations, and other wellness resources that you find useful. I would also love to hear about what you’re up to.
The History of My Thalamus
In 2009, I had finished a beautiful summer being a bike tour guide in Alaska, and was working as an outdoor educator on an Island off of Hong Kong. On a weekend, I decided to go for a quick solo backpacking trip to a surf spot. I had taken a series of ferry and bus rides, and was finally at the trailhead.
A few minutes in, the left side of my face went numb. It was a weird sensation. I ended up taking more buses and a ferry back to my local hospital, and they sent me on another ferry and bus to the main hospital in Hong Kong, without much of an explanation.
I was in the hospital for days, in the Neurology unit. I had my first CAT scan, followed by MRIs. My brain was bleeding, they said. And with solid clinical English, they explained to me that I should be worried. Thanks, guys.
My incredible parents came to see me, after I tried to casually explain over the phone that I was fine, and that my brain was just bleeding a little bit. They have shown me so much support in all areas of my life.
The weeks following were full of uncertainty, but after I came back to the U.S. and had some more tests, I was told it was possibly a fluke. Not anything to be done for now. This whole experience definitely made me analyze my life, and identify what I wanted. I made an oath to myself to do what I wanted, love more, and complain less. Soon after, I made a plan to ride my bike across Japan, met someone who I couldn’t be without, and spent the next few years living my life.
In 2014, I was working more than usual, and I felt so tired. I don’t know the moment it happened, but I started feeling clumsy. I didn’t feel great for a day or two, and then I wrote something. But it looked like chicken scratch. I waited a few hours, I don’t know why. I went home from work and googled too much, gave myself coordination tests, and cried. Then I had my boyfriend drive me to the hospital. More bleeding. Some hospital time, and a trip to see some expert named Gary at Stanford. I would call him his full name out of respect, but I also don’t think my blog needs to show up alongside his medical journal articles.
This is finally when I learned of my diagnosis. Deep Cavernous Malformations in my Thalamus. I had a few weeks of physical therapy, and felt pretty normal. I only missed a few days of work, and although my surfing regressed, things felt pretty good physically. Not emotionally, though. The same thoughts went through my head the first time I went to the hospital, analyzing my life and my priorities. Some changes in my life followed a few months after, and a couple years later I’m here.
I started my career this spring. A job that is challenging, that I love so much. I Finally have found a place that I could see myself at in ten years. I have a great boyfriend and friends, and too many hobbies and passions.
A few weeks ago I went for my annual MRI. Typically a non-exciting event, and I expected to hear the usual update. A nurse called and said there was some minor bleeding, and I shouldn’t be worried. So I was. I went to the clinic, thinking that they would review my MRI with me, and confirm that my brain was bleeding again and that there was nothing that we could do. I have the drill down.
Instead, my doctor casually walks in and says “This is what we’re gonna do.” He then took out his brain model and took out the right and left lobes of the brain, explaining how he was going to shoot a laser beam at my thalamus. Re-assuring me that he wasn’t actually going to remove my brain from my head. I love Gary, I really do. He told me no mountaineering (I actually had my first trip planned to summit Mt. Whitney a few days later) and to take it easy until we get this thing out. At this point, my brain had bled a few times in the same spot, which typically means it’s time to act surgically.
I was overwhelmed at the moment and completely in shock. I didn’t really cry much, I was just frozen in time. I gave it a few days, and then started questioning this decision more. Was this the only option? From the way things were presented, it felt like the only option.
I sat on questions for over a week, playing phone tag with a really great nurse practitioner named Joli. I finally spoke with her, and she answered the questions that I had been laying with at night, like pebbles in my bed.
The risk for future irreparable losses if my brain was to continue bleeding was greater than the risks that came with surgery. The bleed was recent so it would be easier to get, and surgery needed to happen soon. I’m young, and in optimum health. She reminded me that my brain has re-bled a few times in the same area, and was not likely to stop. There have been great results from similar surgeries. All of this sounds good in a clinical sense.
She then outlined the microsurgery again, and reminded me that as hopeful as I am about recovery I will not feel great for a few weeks, maybe more. I spent the evening reading more medical studies, and made my decision. I’m having brain surgery.
The most difficult part about this whole thing is that I feel fine right now. I’m deeply concentrated on my career, and my life is going so well. I don’t want to slow down for a few weeks. I don’t want to risk neurological deficits from the surgery.
Taking my emotions aside, I looked at my future health. I’m electively slowing my life down for a couple months, but hopefully trading this time for a long-term health. Limiting the risk of a future irreparable loss, and a possible emergency brain surgery at an even worse time than now.
The brain is mysterious, but I have much of my life left. I feel like both decisions are a gamble, but that the uncertainty of future bleeds would continue hold me hostage if they are not stopped.
I think that while we all have unknown obstacles in our health at some point in our lives, I know about one of mine. It means that I have a reminder to only do what makes me happy, or at least to be happy no matter what I do. Life is a great gift I’ve been given, and I shouldn’t forget it even for a moment.