Warrior Story: Q&A with Orlena Fong Shek
Updated: Dec 31, 2019
When I launched Designing Silver Linings, part of my mission was to help others share their own stories of resilience. Today, I introduce you to the incredible warrior Orlena Fong Shek. Orlena was a young working mother when she suffered a major hemorrhagic stroke at age 33 due to a rare congenital condition called Moyamoya Disease. Despite two brain surgeries and hemiparesis on her left side, Orlena embodies a positive mind and spirit and now aims to raise awareness about rare brain disease and give other survivors hope about life after stroke. Read on to learn more about Orlena's warrior story, what her journey has taught her about strength and resilience, and what silver linings have helped her move forward.
To start off, can you tell us a bit about yourself?
[Orlena] I'm a native of the San Francisco Bay Area and practiced as an in-house technology licensing attorney, specializing in open source law, a niche and cutting edge area of the law, at Sun Microsystems, Inc., and then at NetApp, Inc. for a number of years. After suffering a major hemorrhagic stroke in late 2011 due to a rare congenital condition called Moyamoya Disease, I put my law career on hold to focus on rehab and my family. In my spare time, I volunteer at my daughter’s school and help raise awareness about rare brain disease. Originally from Los Altos Hills, I live in Burlingame with my husband, our nine year old daughter, and our two year old son.
Take us back to the time your warrior story began. What happened?
[Orlena] On Thursday, December 29, 2011, I had a massive hemorrhagic stroke due to Moyamoya while driving my daughter! At the time, she was only 19 months and I was working full-time as an in-house attorney. I remember it was a Thursday because Thursdays, I got to work from home.
That day, I was taking my daughter to get an outfit for New Years Eve when I started driving erratically on the 92. I knew it was time to pull over as it was getting dangerous. But as I was getting off, I actually lost control of my SUV and hit the center divider. All the airbags deployed, and my daughter started crying. A Good Samaritan called my nanny and she came and took my daughter home. My brother and sister were in town for the holidays so they picked me up.
But when I got home, my head was killing me so I actually called 911 myself and then collapsed. When the ambulance came (the first of 14 ambulance rides I would take that year) and took me to the ER at Mills Peninsula Hospital right down the street, there happened to be a neurosurgeon on call that night who had practiced under the leading Moyamoya neurosurgeon in the world! He saved my life by diagnosing Moyamoya and sent me to Stanford where I had 2 bypass brain surgeries about 5 months later. If you haven’t ever heard of Moyamoya Disease, it is a rare progressive cerebrovascular disorder caused by blocked arteries at the base of the brain. Moyamoya actually means a “puff of smoke” in Japanese, describing the look of the tangle of tiny vessels formed to compensate for the blockage.
How would you describe your reaction and mindset to the news of your accident and diagnosis and how they evolved in the months and years that followed?
[Orlena] After my accident, I spent almost half a year in and out of acute rehab hospitals ranging from Marin to Santa Clara County. My family had to take two freeways, and cross one bridge to visit me. I had to learn how to walk and talk again through rehab. My husband was now a single dad, working full time while also finishing up school. He had to take on a 2nd job since all the medical benefits for the family had been previously provided through my job and now, I was out of work. My daughter had to grow up faster since she couldn’t see her mom for 6 months. So, she is an extremely independent, but more importantly, highly empathetic 9 year old also from having a mom who’s disabled.
Post stroke, I thought I would need a caregiver for the rest of my life. Every morning, I would wheel in my wheelchair to the front door to let my caregiver in. She would then stretch my foot out, and put on my brace and shoes. As a result of the stroke, my vision is impaired so the visual field is limited on the left side, in both eyes. When I first came home, I kept on running into the walls in my wheelchair due to my impaired vision! I also have hemiparesis or weakness on the left side, walk with a cane and due to foot drop, will likely need a brace for the rest of my life.
What are the 1-2 key things that helped you through that most difficult time? What were your sources of strength?
[Orlena] Here’s a photo of the 1,800 origami paper cranes folded by countless coworkers, friends, and family when I was in the hospital. As you can see, the cranes now hang in my living room like a rainbow reminding me of how far I’ve come.
The support from my family and friends, comprising of “Team Orlena” including all of my therapists combined have helped me get through my Moyamoya recovery process. A watershed moment in my rehab occurred 4 years ago, when my therapist taught me how to stretch my foot out, put on my brace and shoes by myself. Once I learned, I could now travel independently!
What have you learned about yourself through this journey? About resilience?
[Orlena] My doctor found a little therapeutic gym in Burlingame that has adaptive equipment I can use, and I’m there everyday of the week. Two years ago, this little gym was on the brink of closure due to lack of funding. As a last ditch effort, the city of Burlingame held a town hall so I stood up in front of 200 people to explain that they had to stay open because I can’t just exercise at 24 Hour Fitness or the YMCA. I need the adaptive equipment available only at this gym. I ended up getting a standing ovation, and they kept the gym open! When I last saw my neurosurgeon, the Moyamoya vessels were disintegrating, eventually they’ll disappear and the chances of another stroke will be highly unlikely. After being diagnosed with Moyamoya, I realized a higher calling was meant for me, to raise awareness about stroke and rare brain disease and to give other people, in particular, young mothers, hope that there can be life after stroke.
What has surprised you the most about your experience following your stroke and surgeries? [Orlena] Although this topic seems all very dark, ironically, having a stroke has brightened my life in ways I could never have imagined. It has provided me a greater appreciation of life since somehow I was given a second chance. Although I may be on permanent disability and can no longer work as an in-house attorney, I can now be a full time mother of two, something I could never have previously imagined to be possible.
How have you moved forward? What, if any, silver lining(s) are there that help you find some meaning out of your hardship?
[Orlena] My motto is “mind over matter.”Although I may be physically disabled as a result of a brain injury due to stroke, my mind is strong. Despite a massive hemorrhage in my brain, ironically, I can use my voice to go out into the community to speak about my stroke, rehab, and recovery in order to raise awareness about rare brain disease as well as to give other survivors hope about life after stroke.
One significant silver lining appeared in December 2017, almost exactly 9 months after my dear Mother passed away when we welcomed a new baby into our family who completes us and has brought more joy to our family than we ever imagined possible. My Occupational Therapist at Mills Peninsula even did an entire session of rehab with me, teaching how to care for a baby with one arm.
What parting words or advice would you want our readers to consider?
[Orlena] Let me leave you with this quote:
”With Moyamoya, we may all be a little broken, but last I checked, broken crayons still color the same.”
I’m learning to color new things in my life now. My hope is to be able to add some color to your understanding of stroke survival.
Who do you know that embodies a positive mindset and strength of spirit that has helped them move forward from hardships (e.g., health, career, family, home, etc.)? Please help me feature other warriors by sharing stories, big or small, with me via this submission form.
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Mother. Warrior. Storyteller.
Parul is a business executive and cancer survivor turned storyteller on a mission to inspire others to design their own silver linings. Combining her experiences as a young working mother diagnosed with breast cancer in her early 30s, a caregiver who transformed her parents' lives with her patient advocacy, and a businesswoman with 15+ years of experience in management consulting and executive roles in consumer, technology, and healthcare companies, Parul aims to help organizations and individuals understand the value of health advocacy, resilience, and a positive mindset. She has shared her personal story through her cancer blog that's been read in ~80 countries, films on survivorship and mindset, TV and radio segments, podcast interviews, and public speaking engagements. More information about her mission, story, and portfolio of work can be found at DesigningSilverLinings.com.
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