Photographic Journey of Brain Surgery Recovery

On December 7th, I celebrate entering 5th year of recovery after my craniotomy to remove 3 Arteriovenous Malformations from my brain.

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

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13 Comments

  1. Even though I don’t know you as well as I wish, knowing of you is a blessing. Your strength in the face of such odds shows that the true definition of character aren’t the hardships or labels one endures, but rather how one lives despite (and in spite :P) of them. Thank you for being vocal and being such a wonderful writer, H!

    1. Thank you so much for reading and taking the time to leave a comment! The more deeply I get into this, the clearler it is that happiness comes from acceptance and perception. The only person who can make me feel bad is me! I’m trying to extend this idea into my day to day to help me manage my mood swings and anxiety attacks, and it’s helping little by little. 🙂

  2. It could have not been easy! I can’t imagine brain surgery or any of that, but these photos exactly capture the feeling and times of what you were going through. I’m glad you’re moving forward and while I can’t understand how you feel on a bigger level, I know what you mean about an after picture of yourself. Of myself. I have mental illness, and while that doesn’t have much to do with brain surgery, I know it causes changes, and there is that before picture of yourself normal and happy and then suddenly…

    but like with all things, time changes and we move forward regardless of our situations. We begin to reclaim our lives and live again.

  3. You have been through so much in only a short period of time and I think that it is fantastic that you are hear to share your journey! It would certainly change your life in so many ways and you have to do things in your own way! It was so good that you did have the seizure so there was a warning that something was wrong! I hope that the coming years will be really positive and you can keep on moving forward. *hugs*

    1. Thank you so much, Kya <3 Without the seizures warning me, I would honestly not have known anything was wrong (since I've grown up with Bipolar Diagnosis and Clinical Depression), and would've started training for a marathon with my roommate.... O_O Imagine that... That summer was brutal too! Can't imagine how badly all that would've ended up! I'm excited to continue my journey with baby steps. 🙂

  4. I have only come across your blog; you write beautifully 🙂 The issues you discuss sound so similar, yet different to myself. I suffered a brain tumour a decade ago, 3 surgeries. Keep going, sounds like you’re doing great!

    1. It’s all part of this marvelous and yet completely mysterious brain! I hope you’re doing well after your surgeries! One was definitely more than enough for me- it’s amazing what you’ve gone through… Wishing you the best, and thanks for coming by! 🙂

  5. Thank you for sharing your story. I suffered a stroke and than diagnosed with Moyamoya disease and a large Avm in may of 2014. I had gamma knife radiation in June of 2015 on the Avm. There is not a plan yet for treatmeant of my Moyamoya. I have read many, many stories about our conditions. I have only came across one study involing both diseases. I also have not read about a person having 3 avm’s. I am curious of the location and sizes of your avm. You seem to be doing well after the struggles.

    1. Hi, Kristy. Thank you for coming by. I’m sorry you are going through double the struggles, with AVM and Moyamoya. 🙁 I had 3 AVMs, all in the same location (left frontal lobe). They actually didn’t know there were 3 until they opened me up, because they were shadowing over each other on the angiograms/other scans. Kind of scary to think they missed something that major… But that made the surgery extend by a few hours. I’m not very sure about the sizes; I think I noted it in my Tumblr back when I was keeping track of everything, but it was localized in my left frontal lobe. If you ever want someone to talk to, I’d be happy to chat… And so would members at our Facebook support group. 🙂 Wishing you the best!!!

    1. Marco, thank you so much for coming all this way from Medium, and even taking a look at my journey!! I’m so glad you’ve come by. 🙂 As they say, “You never know how ‘brave’ you are until ‘brave’ is the only option.”

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