Tag: TBI

The Joy of Art, Music, Crafting and Gifting to Heal the Type A Brain

After my seventh concussion and being diagnosed with Traumatic Brain Injury, as stated in my last two blogs, I began to take my injury more seriously and knew I needed to make a change in my life.  My emotions were on a roller coaster ride.  One minute I would be happy, then next my husband would say something and I was ready to pummel him in rage and then the next I would be crying hysterically like a toddler having a temper tantrum. Not only were my emotions wreaking havoc in my life but my memory, word searching, attention span, reasoning and problem-solving skills were like a child.

Since I had been told by my neurologist to not read, go online or watch TV, I needed to do something to occupy my time and get healthy.  To go from having 15 hours scheduled by the minute to no schedule was utter maddening.  You can only spend so much of your day meditating, doing yoga, going for hikes/walks and cooking. I was still struggling to occupy my days and I wasn’t ready to see very many people other than my closest of friends.  My godfather and mother came over for a visit and she taught me to knit. I became a knitting fool.  Making scarves, hats, shawls for everyone I knew.

My sister-in-law gave me a nail art kit for my birthday and soon I was making everyone wood nail art deer, owls, ravens and landscape pieces.  I also thought it was time to do something with the bags and bags of wine corks I had collected and made these wooden and cork hot pot holders for dining room tables and cork boards. That Christmas everyone got a Rane original creation!  I was becoming a crafting aficionado and enjoying the smiles on people’s faces as they got something made by me.  I was getting a little over zealous with my knitting and I think I made everyone I knew something, that my husband suggested isn’t there other art therapies or maybe even music therapies I could try?

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One of the many shawls I created for friends.

I then remembered with the work I was doing before I went on medical leave from Microsoft regarding helping military veterans reskill and get jobs in technology. There was research on art and music therapy helping military veterans with traumatic brain injury.  I thought if it could work for them, it may possibly work for me.  I couldn’t read the research reports to understand the details and unfortunately scholarly reviewed publications are not on digital audio yet, (perhaps, someone should really look into that.)  So, I went to my psychologist and asked what types of art and music therapy I should try. This would occupy more of my day, give my monkey mind a part-time job and hopefully start helping my cognitive impairments. He suggested I start first with the adult coloring books and listening to classical music.

Once, I was able to read again I began to learn what art and music therapy can really do for you.  In the last ten years, there has been significant progress in the study of TBI and art/music therapies.” Biomedical researchers have found that music is a highly structured auditory language involving complex perception, cognition, and motor control in the brain, and thus it can effectively be used to retrain and reeducate the injured brain.”

I also learned that listening to “polyphonic music has shown to engage neural circuits underlying multiple forms of working memory, attention, semantic processing, target detection, and motor imagery, in turn indicating that music listening engages brain areas that are involved in general functions rather than music-specific areas.”  A good example of polyphonic music is this old Sting classic, I love this YouTube rendition.

In addition to listening to music, I took it a step further and have been teaching myself to play the acoustic guitar. Through other books, I learned the importance of dancing and singing every day to my favorite song and how that help grow the strength in my vagus nerve (As my earlier blog stated, I learned my vagus nerve was having issues and was the reason for my blacking out and causing all my concussions and traumatic brain injury).

My poor husband would have to listen to me belt out at the top of my lungs ‘Dancing Queen’ by ABBA or ‘It’s a Beautiful Day’ by U2 or ‘Brown Eyed Girl by Van Morrison and the list goes on and on.  I started rubbing off on my friends and they would text me their dance out song of the day.  You should try it; your whole body get a rush of endorphins and total jubilation once your done with a grin a mile long and your spouse laughing hysterically at you.

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My first set of paintings on display at Chow Restaurant in Bend, Oregon.

I was starting to get bored with my adult coloring books from Costco.  When I was at the Newport Visual Arts Center, looking at the latest show there was a bunch of people painting with watercolors on the second floor.  As I walked in, I found out they had received a grant that allowed them to give free art classes every day for the community and I was invited in to try.  So for the rest of the Summer, every week I attended the water color class, pottery class, pastel class, coloring pencil class, and acrylic painting class. Soon, I was able to read again, I learned through Psychology Today that art therapists, “McGuinness and Schnur worked with TBI patients and they explain the salient roles of art therapy in addressing various parts of the brain with clients in a user-friendly way.”

They also state that, “art therapy can help with organization, problem solving, and memory when the frontal lobes have been affected by TBI.”  I then started concentrating on acrylic painting as my favorite form of painting.  And thanks to my friends Lisa and Amy, who one day said, “Hey Rane, you are actually getting good- you should sell your art!”  To my utter amazement, a local restaurant wanted me to show my art and by January 2018 I had sold 12 pieces.

Filling my days with painting, listening and playing music my energy, emotions and memory were improving. The hardest part of my TBI has been moving from a super positive always happy demeanor that rarely ever got mad to this uncontrollable rage that pops up from just a little comment could set me off.  If anything can calm this new emotion, I am happy to do it.  I am lucky my husband is understanding and can deal with these moments that happen several times a month.  My days are now packed with art, music, yoga, mediation and the outdoors. I highly encourage everyone, even those who may not have traumatic brain injury the power of adding more art, music or crafting in your life.  A lot of the research highlights how it can help slow and possibly stop Alzheimer.  Here are a few of my favorite beginner Youtube videos to get you started with music, art and knitting, I hope you try-  I promise you will have fun!

 

Learning mindfulness, mediation and tranquility

Through this ordeal I have learned a lot about concussions and traumatic brain injury. Every time I stress out and continue to blackout and hit my head, I could cause major neurologic and psychological problems. I finally took this seriously and decided I could not power on through.  In the next few paragraphs, I will give you a summary about stress, concussions and brain injury.  It’s a little dry taken from Mayo Clinic and a few other scientific publications but its helpful in your understanding why mediation is so important for those of us who are workaholics or survivors of traumatic brain injury.

Every year, 1.5 million Americans sustain traumatic brain injuries.  In a concussion, your neural cells are damaged and your brain must recover to rebuild these cells.  If you are always stressed your levels of cortisol will be high and the brain will take even more time to recover.  Cortisol is a corticosteroid hormone that is released by your adrenal gland during stressful situations. When your highly stressed then a large amount of cortisol remains in your brain. It generates more overproduction of myelin-producing cells and fewer neurons than normal. This can result in adverse effects that can impair important cognitive structures in your brain, like damage to your hippocampus (responsible for the processing and storage of short-term memory).  In addition, it affects the differences in the volume of gray matter versus white matter (creating more white matter and increasing atrophy in the white matter), as well as the and size and connectivity of the amygdala (is the integrative center for emotions, emotional behavior, and motivation).  The “gray matter” of the brain is densely packed with nerve cell bodies and is responsible for the brain’s higher functions, such as thinking, computing, and decision-making.

Multiple concussions reduce the amount of gray matter and decreases the number of stem cells that mature into neurons affecting learning, memory, decision making, multi-tasking and concentration. In post-concussion syndrome you can have symptoms like fatigue, sleep difficulties, irritability, balance and coordination problems, agitation, nausea, vomiting, dizziness, altered consciousness and difficulty processing information. I was suffering from all of these!  Studies and research have shown that Mindfulness meditation helps to reduce the symptoms and distress on the brain and helps increase gray matter in the insula, frontal cortex and sensory regions.  Researchers found that the frontal regions, anterior cingulate, limbic system and parietal lobes were affected during meditation and that there were different patterns of cerebral blood flow between the two meditation states i.e.“focused-based” practice and a “breath-based” practice.

Meditation increases regional cerebral blood flow (rCBF) in the prefrontal cortex.  As reported by researchers the cerebral blood flow of long-term meditators was significantly higher compared to non-meditators in the prefrontal cortex, parietal cortex, thalamus, putamen, caudate, and midbrain. In brief body-scans of meditators show meditation practice improves somatosensory perceptual decision making.  Meditation enhances cortical remapping and brain functions while it also helps to uplift mental health and causes healthy changes in the brain. It was time to take my meditation practice seriously!

So, for ten years I was trying to learn how to meditate but never had truly made a practice.  I had read a number of books on meditation, mindfulness and how to radiate calmness.  I even went to mediation workshops but I never stuck to it.  Now I had to or I may never get better.  In the beginning, trying to calm my monkey mind was impossible.  I would start focusing on my breath and then the next minute I would be thinking about what I would knit next, go back to my breath and then think about a new recipe to try.  I could never sit there for more than 5 minutes without having to twitch or move or scratch.

If you are a crazy Type A person, whose mind is always thinking and nerving on something.  The best way to get into a mediation practice is to start with guided meditation for sleep, called Yoga Nidra.  I started with this one and then later I downloaded the Insight Timer App from the Google Store, it is amazing and I highly recommend it. My first few weeks I focused on mediating for 15 minutes lying down in bed before sleep during my afternoon nap and right before bed. Your brain can much more easily focus on the voice.   Like what my favorite Tibetan Buddhist Meditation master: Yongey Mingyur Rinpoche says, “You must give your monkey mind a part-time job to be able to meditate.”  As I did these guided meditations, I began to really focus on breathing meditation.

So, a couple times a week before I got up to start my day, I would switch off my audiobook and focus on my breath.   I would chant in my mind rising and falling with the rise and fall of my breath.  When my mind would wonder to something I could hear I would chant hearing, hearing.  Then when it would calm I would go back to my breath and chanting rising and falling.  When I would feel my mind wandering and want to scratch or move my leg, I would start chanting feeling and I would then not need to move and then go back to focusing on my breath.  Soon I was building mindfulness and awareness.  Once again, I was only doing this for 10-15 minutes.  I could feel my energy increase, my twitching and constant need to move to slow.

I am also now enjoying chanting mediation called Om mani padme hum.  I took this from the Tibetan Culture website “Om mani padme hum, which is an ancient mantra that is related to the bodhisattva of compassion, Avalokiteshvara.  Every Tibetan child is taught the mantra by their parents, and they all use it very commonly in daily life, and especially if they make a prayer walk (kora) or go to the temple, or pray using a rosary (mala).  Basically, any mantra is “a sound, syllable, word, or group of words that is considered capable of ‘creating transformation.’”  There are great examples and guides on the Insight Timer App.

I then re-read all my meditation books, I highly recommend the following:

·         The Joy of Living: Unlocking the Secret and Science of Happiness, By Yongey Mingyur Rinpoche with Eric Swanson, Daniel Goleman

·         Joyful Wisdom: Embracing Change and Finding Freedom, By Yongey Mingyur Rinpoche with Eric Swanson

·         Turning Confusion into Clarity: A Guide to the Foundation Practices of Tibetan Buddhism, By Yongey Mingyur Rinpoche with Helen Tworkov, Matthieu Ricard      ranemediating

Rane mediating at our Beach House in Newport, Oregon

They now began to make more sense to me.  I now tried walking mediation when I went on my walks in Shevlin Park and around the golf course.  Trust me it’s not easy, I would have good weeks and have weeks in which I did no mediation and forgot about my practice.  But I wanted my brain to heal so I would then make sure even if it was only 5 minutes I did some type of mediation each day.  Then my friend Maribel taught me Hong Sau Mediation, which I love and can do for 30 minutes a day now.  I highly suggest this for beginners, here is a link to a great guide.

Today, I am focused on loving kindness and mindfulness mediation called Metta Bhavana.  In this practice, you start focusing on yourself and feelings of peace and calmness and then nurture your state of mind into strength and confidence while chanting ‘may I be well, may I be happy, may I be healthy and may I be free from suffering’ and cultivate the love within your heart.  The next stage you focus on a close friend.  Think about your connections, why you love this person, why you are encouraged by this person and begin chanting ‘may he/she be well and happy’ as you feel the love in your heart for that person grow.  Think of a person you are neutral with and have neither strong love or dislike for and think about this person’s humanity, what actions this person can make you feel encouraged and could make you love this person.  Begin chanting ‘may he/she be well and happy.’ Now think of someone you really dislike and have ill feelings toward (an enemy) and don’t concentrate on their negative actions but think about their positive actions, how can you think about the good intent he/she may have, how could you grow to love this person, how can you encourage this person and have good will towards this person.  Now chant ‘may he/she be well and happy.’ Lastly, in this practice you will think about all four people in positive light, now extend those thoughts to all the people you know, all the people in your neighborhood, all the people in your town, all the people in your region, all the people in your country, all the people and beings on earth.  Feel the love, encouragement, kindness you have for all these people.  Begin chanting ‘may all the people on earth be well and happy.  Slowly focus back on your heart and the love and kindness you are feeling and then step away from your practice.  This has grown into a 45-minute practice for me now.  Some great guides come from the buddhist centre.

My aspiration is for my experiences through mediation to help you in your desire to grow your meditation practice.  My greatest wish is this helps other Type A’s who feel: I really want to meditate but I just don’t have time or patience or the ability to focus their brain that way.  I am here to tell you, you can’t afford not to!  If you are a stress junkie like myself, you must start mediating ASAP you really want to repair the damage you are doing to your brain.   I am hopeful that this is helping my brain and in turn yours.  I am on twenty months of no blackouts and my migraines are diminishing.  I believe my memory is getting better.  I am also working much more on the right side of my brain with art, crafts, playing music but that is the next blog post.  Till next week, I hope you try a few of the practices above.

Back to Changing the World or Not?

The old saying, “If I knew then what I know now”, echoes in my mind.

I would have not gone to the Hackathon in LA back in 2013 and when my doctor said I must rest. I would have had my husband hide my cellphone, laptop and taken it easy.  Instead, for the next six months, I still went online on my phone doing emails and answering what I thought were crucial emails and calling colleagues on how to execute important projects.

Of-course looking back none of it was more crucial than my health, I wasn’t saving lives, things could have waited.  Others within Microsoft would’ve taken the slack.  However, my ego was hard to reign in.  I thought what I was doing was so critical and no one else had the expertise and needed my coaching for things to be completed exactly the way I thopught they needed to be done.

Many of us think we can just ‘tough it out’ and work through cold, illness, etc.  What ‘toughing it out’ did do was postpone my recovery. Failure to heed my body’s warning signs caused dizziness, migraines, memory loss, executive function and slowed my multi-tasking abilities.  I now had to do eye therapy and my ability to focus  (switching from looking close and away) diminished to the ability of an eight-year-old and required me to relearn my focus and get glasses for the first time in my life.

So, after six months of eye therapy, no driving (Five years later, I still lack the confidence to drive and am only slowly adding in daytime driving for short distances.  But last month I did do my first long 200 mile drive from Bend to Newport, Oregon ), no television, no computer, no reading, no alcohol, no caffeine, no high intensity exercise, constant migraine headaches, dizziness, nausea, word searching, memory loss, six more black out concussions and lack of balance.  Then one day I awoke with a clearing in my head I had not felt in 6 months.  I went to the neurologist, she did some tests and said I think you are okay to go back to work but you must take it slow!  Do not jump fully in and do not take too much on you have been resting your brain for 6 months you need a slow transition back to work.

I did not realize her definition of slow was very different from mine.  Compared to the way I used to work, 12-18 hour days, I was only working 10 now.  Instead of traveling 3 weeks a month, I started with just a few days a month.  But as the months drove on, I was feeling more and more like myself again.

There was so much work to be done in diversity in computer science, combating human trafficking, committees for the White House Office of Technology Policy on computer science education for underrepresented groups and technology implications of human trafficking, hackathons, hacks for good, conferences, keynotes, panels, guest lectures, publications, projects with UN Women, NCWIT, ABI, CRA-W, ACM-W and the making of Dream Big (movie featuring young women in computer science changing the world), that I started back to my 16 hour days, and my crazy travel of three weeks a month.

Rane moderating Big Dream Panel at the Napa Valley Film Festival

Taking on diversity and Computer Science efforts at top universities around the country heading to India, Korea, UK, Brazil, Singapore, and across the United States.  In a previous blog post, you saw our film was featured at the Napa Valley Film Festival and was being shown all over the world.  I was so excited about the progress!  Also, the fact that Microsoft and Microsoft Research’s efforts were highlighted in many of the top publications (i.e. Slate, NPR, Huffington Post), I couldn’t but help agreeing to serve on nonprofit boards needing our help and expertise, at one point I was on thirteen boards.  My hubris and type A drive which had carried me so far was a hindrance to my healing.

At every free moment, I was working on some project with one of the many non-profits (as you know I am a get shit done person and not just a sit and advise type person).  In my spare time, I was at home trying to transform my local community (Bend, Oregon) by supporting more STEM efforts, starting a scholarship for under-represented groups in computer science and engineering at OSU-Cascades, helping entrepreneurs, volunteering with the tech community and local youth, mentoring and teaching a course called ‘Ethics and Computer Science’ at OSU-Cascades. I could feel the exhaustion coming on but I thought to myself “just one more conference and then I will take two weeks off and be fine.”

I am here to tell you, we are not robots and you can continue to ignore the signs your body gives off but if you don’t listen it will force you to listen.  As Type A workaholics, passionate and ready to take on the world are bodies are resilient but not that resilient!  You cannot ‘tough it out’ you must pause when your body needs a pause even if it is just a mental health day from work.

So, on May 23, 2015, while attending a conference on behalf of Microsoft I had just finished several sessions and presentations at Day one of the NCWIT Conference in Hilton Head.  I had a dinner meeting with Mayim Bialik (Big Bang Theory-that was so cool!) discussing our film and her possible support and how Microsoft could possibly support a new Girls in STEM TV series she was going to kick off.  We returned to the hotel and I saw several of the researchers I was working with on a number of projects at the bar talking asking me to come join them.

After discussing theories, projects, new opportunities and changing the world of computer science it was reaching midnight and time for me to head for bed.  I was tired and started to feel a pain in my side (later I would figure out that would be a sign that I would blackout soon) but I ignored it and kept on.  As I walked away from the bar area to the elevators, the next minute I know I awoke in someone’s arms, with so many people surrounding me, all dazed and confused as I try to get up.  There was shouting, “Rane don’t move you’re bleeding and bleeding a  lot.”

Suddenly, EMTs are walking briskly toward me as my eye sight slowly comes back from a fog of gray and blurs.  “Ma’am you blacked out and hit your head, you have a good side gash on your head, can you just lay back we are going to put you in a neck brace and start an IV?” said the nice EMT gentleman.  One of my research friends from Harvey Mudd University began telling the EMT what had happened and he had her and a staffer from NCWIT follow the ambulance to the Emergency Room (thanks Catherine & Colleen).

Rane in emergency room sending selfie to her husband to calm him down, trying to make it look not so bad.

I had thrown up a few times in the ambulance (sorry Mr. EMT guy- all over him) and still could not comprehend what was going on. While waiting for the doctor, my colleagues called my husband and tried not to scare him with me being in the emergency room again and blacking out after hitting my head.  Once they were done, then I was taken for MRI, CT Scan, stitches and forced to stay awake for a few hours to ensure I wasn’t going to go to sleep and never wake up again.  I finally got back to the hotel at 4AM looking like a semi-truck hit me, it took me an hour to wash all the coagulated blood out of my hair. I went to sleep and at 10am I awoke to call the airline and get a flight back to Bend, Oregon to go to my neurologist.  I flew out with frustration, here we go again.  With a horrible migraine, nausea and dizziness, I headed to the airport to what would be a multi leg eight-hour (the take offs and landings were excruciating with another concussion) flight before I finally got back to Bend and into the arms of my husband. It was also so humiliating for an extremely independent person to be whisked on and off the planes on a wheel chair as people looked at me like oh that poor young woman. Talk about a humbling experience.  I was beaten down.

This resulted in the next several years of trying to figure out why I was blacking out, thirteen more concussions resulting in me having traumatic brain injury and fighting the insurance company for my long-term disability.  Who would know the benefit you pay into hoping you will never have to use would be so difficult to obtain.  Once you need this benefit, how difficult it is to get it, even harder to keep it and then battling their doctors, lawyers, appeals and lawsuits to get the money and benefits you need, deserve and have earned. No one explains how you need to fill out all these forms and one little error can make your benefits never happen.  Having to go on unpaid medical leave due to this (I will have an entire blog dedicated to this subject later in my blog series to help those dealing with long-term and short-term disability claims, so you know what to do to get the benefits you deserve).  I would move from one doctor visit a year with my primary care for annual physical and flu shot to multiple visits a week with the following healthcare providers: Neurologist, Vasovagal Specialist, Optometrist, Vestibular Therapist, Occupational Therapist, Neurofeedback Psychologist, Psychologist, Acupuncturist and Chiropractor.

I didn’t realize how life threatening it could be for you if you tried to just push through the pain.  I plead with you if you have a concussion to please take the needed time off and screen time off! I learned the hard way and trust me you don’t want to go through this.  During this process, I had to get character letters from friends and colleagues about the Rane before and the Rane after all these concussions for the lawyers and it was painful to read the new person I had become.  As I researched what was wrong with me, I realized we still don’t know much about the brain and especially concussions. I read and listened to everything I could on TBI and concussions.   I will spare you with the peer review scholarly research publications (they are quite dry, interesting but will put you to sleep) but here are my top three books for you to read if you or a family member is dealing with this issue.  Next week, my blog will be on lessons learned on how  Type A’s can rest your brain.

  1. Super Better by Jane McGonigal
  2. Mindstorms: The Complete Guide for Families Living with Traumatic Brain Injury by John W Cassidy
  3. Coping with Concussion and Mild Traumatic Brain Injury: A Guide to Living with the Challenges Associated with Post Concussion Syndrome and Brain Trauma by Barbara Albers Hill and Diane Roberts Stoler

10 Series: My Concussion, Traumatic Brain Injury and Spouse Support

Hi folks, you may have been wondering where I’ve been the last few years since I’ve fallen off the map and social media world.  Unfortunately, at the NCWIT Conference in May 2015, I had a Vasovagal Syncope episode (My husband will describe this later) which resulted in a concussion and an ambulance ride to the ER in Hilton Head, North Carolina.  I’d like to thank all the thoughtful researchers, professors and NCWIT staff who helped me at the Emergency Room and back at the hotel.  This was my 7th concussion since February 2013 and my body was telling me to slow down in a not so gentle way.  The slow down required me to go on medical leave to the present and my future blogs will describe the 13 concussions and resulting Traumatic Brain Injury (TBI) and the fight to move from a ‘Type A’, left brained person trying to change the world to someone who needs to slow down, become more right-brained and focus on selfcare.  The blogs I hope will illustrate our frustration with the lack of understanding regarding concussions and TBI by medical professionals and insurance companies.  How the recovery process works for workaholic, outgoing, overachievers.  As well as the hardship for spouses who have to try and take care of a TBI loved one.  I’ll also try to include some words of advice so this doesn’t happen to others, but let’s start at the beginning… 

My husband Greg helps in describing the events from February 2013 that led to my current health conditions that I have been struggling with for the last four years.  Greg describes what he encountered: 

I woke up at about 2am to the sound of a large thud/crash.  I was startled and immediately thought that an intruder had kicked in our sliding door downstairs.  I leaned over to tell Rane that someone was breaking in and that I was going to check on it.  I was shocked she wasn’t there and my heart sank.  I knew something was wrong.  I hurried downstairs and found a large pool of blood next to the refrigerator and no Rane.  I freaked out and started to look for her, I found her in a daze trying to clean herself up in the bathroom.  She had hit her head and had a laceration on her chin where she had fallen on the floor.  We cleaned up the blood and tried to get Rane settled down back in bed after she insisted she didn’t need to go to the hospital right away (Even though she had a headache, blurred vision, was feeling nauseous and vomited, which we later learned are all signs of a concussion.)  In hindsight, I still feel regret for listening to her and not taking her immediately to the hospital.   

All I could think of was that she should not go back to sleep because a concussion could lead to complications, like going to sleep and not waking up-ever.  I had little to no experience in my life with concussions and did not know what to do next.  I seemed to recall that if someone hit their head and is that they should not go to sleep, I helped Rane into the shower.  I had her shower, sit up in bed and not go to sleep for a few hours until she seemed somewhat stable before I let her finally go to sleep.  This was the start of our experience with concussions and the complications from this little understood medical condition. 

It was a Sunday morning, a few hours after her fall, when I took Rane to the Bend Memorial Clinic Emergency Room in Bend, Oregon.  For some background, we had just moved from Seattle about 2 weeks prior to the incident.  We were just getting used to our new home.  The doctor we saw gave Rane some stitches and asked her some medical questions.  He said she probably had a concussion and she should be wary of the onset of concussion symptoms.  He suggested she go home and rest but Rane asked the doctor if she could fly later that morning for a Hackathon she was leading in Los Angeles, CA for work.   

For those of you who don’t know, Rane was a Principal Researcher for Microsoft who was leading Diversity Outreach and growing the next generation of computer scientists–especially women and underrepresented groups—at the time her concussions began.  It was to be the first International Women’s Hackathon* focused on hacking for good and helping non-profits with applications to uniquely help their causes.  Rane, as the leader, was worried.  She was expected to be there leading around 800 women from the world over who were counting on her.  Additionally, this event was her chance to bring the topic of Women in Tech and Women in Computer Science strongly into the media forefront.  Interviews were set up with the New York Times, LA Times, Huffington Post and NPR.  

The ER doctor gave her ‘permission’ to go on that Microsoft business trip and was rather nonchalant about the incident.  He did however tell her if she had a particular list of symptoms, to go to the emergency room.  Rane being the driven and dependable person she was ignored them all.   In hindsight, this decision for Rane to ‘tough it out’ and push through the concussion symptoms was a mistake. I wish I had forced her to stay home and take care of the concussion.   As it turns out this decision likely worsened her condition and greatly extended the duration and severity of its symptoms.  Her issues had a medical name we were later to find out from her Neurologist.  It is called Post-Concussion Syndrome. 

Some small consolation was the good Rane was able to do while on her work trip in LA.  The Hackathon reached women from seven countries and nearly 800 students from colleges and universities.  If you read her blog from February 2013, you will remember her focus was to help victims of human trafficking and work with the top NGOs in the United States to tackle this complex and horrendous issue. They focused on solving the following questions: given that internet technology is being used for exploitation and trafficking, how might the tools and opportunities of the internet also be used for the protection and defense of victims? How might a victim of trafficking be able to access the Internet to find her freedom?   

The home base for the Hackathon was University of Southern California (USC), with in-person and Skyped-in participants facilitating connection with women from eight countries around the world.  The Hackathon was able to show women they may only be small in number at their university but there are many of them around the world and they can collaborate and support each other.  The young women brought up how this was so different from other hackathons where they were mostly surrounded by men and most of the time ignored, not able to program but were instead relegated to project management or the final presentation.  There was fierce competition but everyone was supportive in giving suggestions, helping debug issues and wanting each other to be successful in helping the NGOs.  Several women discussed the fact that it was so cool to go on Skype and talk to women from countries outside of the United States like Columbia in South America and Australia.  It was exciting to discuss their applications and approaches.  The best quote Rane brought up to me was “It’s like competing locally but collaborating globally, it’s awesome to see I’m not so all alone and there are many women like me around the world!”   

After the hackathon, Rane was headed to Redmond for business meetings and her quarterly business review presentation.  I was surprised to hear from Rane that she was coming home early and needed to go to the hospital and get a MRI and CT Scan.  She had blacked-out and fell again at work, she had migraines and was very dizzy and nauseous.  I picked her up at the airport and I have never seen her so pale and suffering from a lack of energy.  She told me that she had been dizzy, nauseous and vomited several times during the hackathon.  I was so mad to hear she stayed up 38 hours straight and helped the ladies with their applications. Thank goodness, she was staying with a good Microsoft friend Kristin Tolle whose husband is a doctor.  After Rane was feeling weak and fell into Kristin’s arms, her husband told Rane she needed to go home immediately and see a neurologist.    

Rane had made an appointment while at Microsoft, and we went straight to the neurologist.  After a number of tests, we were lucky Rane did not appear to have any major brain issues besides post concussive syndrome and was ordered to take two weeks with no screen time and complete bed rest.  The doctor then let us know she should not have done the hackathon or worked.  Hindsight is 20/20.  As Rane’s supporters and friends you know she did not consider her cellphone as screen time and continued to answer emails and take calls.  This we would later find postponed her recovery.  Her eyesight and focusing abilities diminished to that of an eight-year-old, that after having 20/20 vision all her life prior to the head injuries.  Rane had to get glasses and go to eye therapy with an ophthalmologist to train her eyes to help her brain so she could finally get back to work.   

Rane continued to experience a lot of nausea, migraines, inability to focus, word searching, memory issues and continued to get worse and not better.  After two weeks off, she went back to work and traveled to Michigan to be a keynote speaker at the Women In Computing Conference.  While on the plane she got very sick and had to call the conference organizer to ask them to pick her up from the airport as she could not drive.  The organizer was very nice and picked Rane up and had her stay the weekend at her home.  Of course, she did her keynote and additional talks and meetings at the University.   

When she got home, she was an absolute disaster.  She was then forced to take 6 months off by her doctor and that’s when we first encountered the challenges with insurance companies and concussions.  Instead of granting Rane her short-term disability after four doctors had said she cannot work, the Insurance Company doctors said she was fine and did not have enough cognitive impairment to warrant short term disability.  She was forced to take unpaid medical leave.  It was a very stressful situation and did not help in Rane’s recovery.  We had no idea how bad concussions were and as soon as Rane felt almost 100% she hurried back to work.  She continued her crazy schedule and was off to Universities and Conferences around the world.  Never slowing down.   

If I knew then what I know now, I would have hidden her computers and cellphone and not let her return to work so quickly and especially fly all over the world.  

So, this leads Rane and I to describe what we’ve learned going through this process and hopefully some of the lessons that may help other people in similar situations.  This has been a five-year ordeal.  Here are three actions spouse’s supporting concussion/TBI survivors should consider: 

  1. For many caregivers, the hardest thing is finding some time and space to take care of their own health and needs. You will feel you can never leave your spouse alone and always worried about what if… It is okay to get away!  At first it may only be 30 minutes, then half a day, then you’ll feel okay finding a friend to stay with your spouse so you can get away for a few days and clear your head, you need this for your sanity!  If you are not healthy, you can’t take care of your loved one. 
  2. It is hard to get use to the emotional rollercoaster your spouse will have—one minute they are happy, the next easily hurt and upset, the next angry and ready to explode.  It will be hard, the anger will be overwhelming at times.  You will want to yell back, “What did I do this time?  You are really over reacting!”  Trust me that doesn’t help.  Learn to walk away, let it go and go meditate for 15 minutes.  BREATHE.  Remember, their brain can no longer control their emotions.
  3. Possessiveness and controlling behavior becomes instinct as you are caring for your spouse, it is hard to let go as they are getting better you are worried the worse can happen.  In the beginning this is a must, your spouse will get frustrated and mad at you often but don’t stop.  There will become a time in the healing process when you do need to let go.  Ultimately, you must trust they know their body and allow them to be the adult they are and make decisions on their own.   

This is the first of 10-part series, keep coming back to learn how to manage life with TBI or what not to do so you don’t get TBI.  Some of the future blog posts may include the following topics: 

  • Concussions & Traumatic Brain Injury (TBI) and symptoms – What I’ve learned from lots of doctors and therapists and my own experience 
  • Vasovagal syncope- what doctors believe is the cause of my blackout episodes 
  • Learning patience and how Type ‘A’s can slow down before their bodies force them 
  • Finding solace in crafting (and the fun of gifting my creations away) and the joy of arts in healing 
  • The power and relaxation/healing benefits from audiobooks (my top ten books) 
  • Importance of meditation and great outdoors for healing 
  • Need for good nutrition in recovering from TBI 
  • Dealing with Insurance Providers effectively, what they don’t tell you 
  • There is Life after Microsoft 
  • Learning a New Normal  and Finding a (New) Life’s Purpose  

*Hackathon definition from Google- an event, typically lasting several days, in which a large number of people meet to engage in collaborative computer programming. 

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