Hiro's Story
As I sit in the coffee shop, my iced Matcha green tea latte collects condensation, the sounds of the espresso machine and the chatter of other patrons fade into the background. I’m too deep in my own thoughts. Hiro has moved me there. Her words about her own life beg for introspection. As I struggle to keep tears at bay, the daylight comes through the window and kisses my cheeks. I am filled with warmth.
This past month has been one of soul searching for me. I have experienced many indicators that living life selfishly, about my own wants and likes, my own personal passions, is not enough. To whom much is given, much is required (Luke 12:48). And I realize that for all I’ve been given – namely, an unyielding zest for life and an unshakable faith in the midst of medical turmoil – I have not paid enough forward. I have moved forward, over each hurdle, sidestepping any deterrent. Southern, facially deformed, girl making it in this big city of Angels (LA). And yet, that in itself, does not fulfill.
What does then? As Hiro will share with us, it is our adamancy that our lives are not bound up in the inconsequential aspects of life nor found on the mountain tops of material success. To paraphrase a speaker I heard recently, it is in the valleys that life is really lived. We should be encouraged not to run from those seasons in the trenches. As Hiro will show us, we can emerge grateful for the struggle and refocused on how we can use all that we have become for the benefit of others.
Hometown: Maryland
When I was younger, I wanted to be: Teacher
In 10 years, I will have: Found a way to integrate my background in Special Education, interests in Disability Advocacy, and career in Technology to find a field for myself that I can invest my life in pursuing (possibly in the field of assistive technology).
My life long goal is to: Work in disability advocacy to provide support and resources for families and individuals to thrive in their differences.
If I could change one thing about the world, I would: Provide education for all children.
My favorite quote/scripture/affirmation statement is: “We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.” - Maya Angelou
1) Describe the type of AVM you have?
What was the first sign? I had 3 cerebral AVMs in my left frontal lobe, with the first sign being a tonic clonic seizure (I had 2 more in the span of half a year after that) when I was 21, and a senior in college.
2) How did you eventually come to receive treatment?
I was diagnosed after 3 months and half a dozen different types of scans. My neurologist recommended a neurosurgeon at Johns Hopkins, and I was fortunate enough to get an appointment in the follow months with him to discuss treatment options. We decided on crainotomy.
3) Who are/were your main doctors, where are/were you treated and how has your care been?
Dr. Alessandro Olivi at Johns Hopkins Hospital. The surgery itself was phenomenal. However, we were not prepared nor informed about any of the side effects/recovery timelines/events that came with having a craniotomy, and had to find everything out ourselves, generally after a lot of pain and confusion.
4) How do you feel your health will progress in the future?
I have been going to the gym and running since this January, and by July, had successfully lost 20lbs I had put on since taking an office job. Since spring, I have been running many races, and hope to continue learning to be healthy and take care of myself to reach optimum health for my brain and body.
5) How has having an AVM changed or impacted your life?
Having an AVM has thrown a completely life-altering curve-ball into my life. It is strange to say, but I am thankful for it in many ways, as it has allowed me to reevaluate my life and what is really important, while what superfluous things are not. In this age of fast-paced, workaholic society, it is often difficult to disengage and really assess what is important in life (family, friends, quality time spent doing activities with loved ones) as opposed to things that may seem important, but once you look back on your life, would not have missed. I am able to appreciate the “small things” in life that seem very insignificant, and for that, I am thankful, as I am fully aware of how close I was to losing everything.
6) What has been your biggest challenge in the battle with AVM?
Finding information, resources, and support for survivors before, during, and after treatment. My family and I basically went through the journey blind-folded, and I wish it could have been made easier with guidance, either by medical professionals or by peers and other survivors. For this reason, I have founded Burgundy for Life (http://burgundyforlife.org http://fb.com/avmalformation) in order to spread information, provide/create resources, and facilitate support group environments for survivors and their families, which are all things I wish I had when we were going through the journey.
7) What do you think a documentary about those surviving AVM can achieve?
Given majority of the population still has no idea what a vascular malformation even is, quite a lot! Many of the doctors I have spoken to were not familiar with AVMs, and so clearly there is a lot of publicity that is lacking for this disorder.
8) What are your hopes for the future of AVM research?
For less invasive treatment methods that could work for many of the “inoperable” or “incurable” AVMs present today.
9) What has been the biggest lesson you've learned throughout your journey thus far?
There is not one path through life; it’s going to take you through very dark and strange backroads and small paths that you aren’t even sure are actually paths, but in the end, you are going to come out stronger, better, and a more fulfilled person.
10) What is your proudest accomplishment?
Graduating a year and a half after my craniotomy with my B.S. in Special Education, and then the year after that with my M.Ed. in Special Education, and then moving to New York City and establishing my ability to live and work independently. Many people were adamant that I will never be able to work full time or achieve independence (ie: move away from my parents), so I felt that I needed to do something drastic to prove to myself that I can do whatever I set my mind to. Now I work as an IT Support Analyst in NYC, training for my first half marathon in 2017.
Check out a timeline/photographic essay of the past 4 years of Hiro's journey here: http://twistedpaths.org/brain-surgery-journey/
