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!

 

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How to Rest a Type A Brain

So, what became my biggest struggle and the thing holding back my recovery was rest!  I needed to give my monkey mind a part-time job!  You would think when your employer, doctors, family and friends all tell you don’t worry about anything we got it, just focus on your health and getting better, it would make it easier.  It would give you the excuse and confidence you need to finally rest, sleep in, relax and finally be okay to do ‘nothing’.  For a person who is constantly on the go this was worse than Dante’s Inferno. I was anxious, since I was four years old I had been on the go, constantly a full schedule.  Back then it was Brownies (like Boy Scouts for girls), soccer, ballet, gymnastics and school now it was job, mentoring, volunteering, boards, committees, running, exercising, yoga, friends, family the list went on and on. I couldn’t get my brain to relax when I was going to bed when I was normal, how am I going to rest my brain 24-7?  What a nightmare!

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Rane multi-tasking working on two computers, three screens, writing a report, on a conference call and doing email.

For the first five days, sleeping in and having my husband wait on me hand and foot was a pleasure!  I had been here before and I knew I could not afford to do what I did last time.  I could not ignore my doctors’ orders and begin using my cellphone, emails, and texts.  I only allowed myself to text friends but I otherwise had to ignore the cellphone.  I couldn’t watch TV, I couldn’t read a book, I couldn’t drive, I couldn’t have any screen time, I couldn’t go to the grocery store, I couldn’t leave the house, I was dying of boredom!

I was also so scared, it took me 6 months to recover the last time and still the doctors had no idea why I was blacking out.  I had surgery to implant a heart monitor to see if I had a heart issue and after pain and $35,000, good news I don’t have a heart condition but bad news I am so healthy doctors can’t figure out why am I blacking out so much and how to remedy the situation.

I had no idea if I could ever take a shower alone again.  Going through my mind was blacking out and drowning. The last time I went to the bathroom and blacked out and woke up on the floor my family was scared to leave me alone.  Could I ever be alone again? My poor husband was with me 24-7, watching me like a hawk and stressed out beyond belief.  I knew from last time, I had to make myself a schedule or I would go crazy.  I had to fill my day.

So, I went back to listening to audiobooks, cooking healthy meals, and going on long walks on the many Bend trails with my husband and dog Bode.  Indica Marijuana was great to help me finally calm down and actually sleep.   A nap in the afternoon helped to ward off the migraine headaches.  I passed the time listening to audiobooks (this was a great distraction- I became a huge fan of Michael Connelly and crime fiction with more than 60 books I could listen to), knitting so many hours in a day that my hands felt like they were going to fall off, then yoga and meditation before bed and of course more audiobooks.  I would have ear buds in almost all the time, it started driving my husband crazy, as I would always say I didn’t hear you as he would try to have a conversation for me.  I went from an obsessive workaholic to an obsessive book listener, listening to at least 3 books a week.  An obsessive knitter, finishing knitting project every two days. An obsessive home chef, trying new recipes for every meal (breakfast, lunch or dinner) probably the best meals my husband had our entire relationship with fresh homemade foods every day.  The only way my husband got peace was taking me outdoors hiking, walking, kayaking, paddling and away from the house to get my mind to finally turn off and enjoy the fresh smell and beauty of the Oregon high desert.

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Greg, Bode and I on the Deschutes River August 2015

My migraines were worse than the first time, seemed like all day every day, I was so dizzy and nauseous and I couldn’t remember anything.  I just forced myself to push through (later I would find out that is the worst thing you can do and would delay the brain healing and made myself worse) the migraines, I wasn’t going to lay in bed in the dark anymore.  I was just in a constant haze and in miserable pain and probably not a joy to be around.  It drove me nuts how much I searched for the words that were on the tip of my tongue and would come out totally wrong, like botching an idiom.  I had no focus and would be doing one thing and a minute later start something else and totally forget about what I was doing before.  If I tried to multitask, I would get a worse migraine.  This lasted for months before I was ready to see and talk to friends again.  I love being around people and I didn’t want to see anyone but my husband and dog.

All the while, I would be contacting Microsoft every two weeks saying I can’t come back to work, but I was still answering any emergency email or giving directions on the phone on important issues or projects.  I skimmed emails to see only if there were important ones to answer, when my boss came back and said you are on short term disability and on medical leave you cannot be online.  You must stop or I will lock you out of the system.   He had to threaten me with this several times before I finally took it seriously.

Finally, my neurologist said you are out for a minimum of 9 months, no more calling work, no more answering emails on the side, no more volunteering, your declining and not getting better, you are done!  Your husband is to hide your computer and you must relax your brain.  We have one last area we haven’t tried, so I would like you to go to OHSU and test you for seizures.  I believe you don’t have them but let’s make sure.  Since we have tested you for everything and they all come back negative.

So another doctor to visit and I went to OHSU, I had a sleep deprived EEG to replicate stress.  I blacked out during the test.  So, the doctor informed me I didn’t have seizures but to put it in laymen terms, I had Vasovagal syncope and stress was the trigger.  When I get stressed my body’s Vagus nerve freaks out and not enough blood and oxygen goes to my brain.  I had low blood pressure and my blood pressure was so low I was in hypotension.  So when the Vagus nerve wouldn’t work my blood pressure wasn’t high enough to pump the blood and oxygen to my brain, so I would blackout and hit my head on the ground since I got no indication it was happening or was on its way.  There is nothing you can do but bring down your stress, there are no magic bullets to take for this.  Great, my doc is telling a Type A, who thrives on stress, that I can no longer have stress in my life!  WTF! How the hell was I going to do this?  My husband was on a mission, remove all stress from my life.

All I could do now was light exercise (nothing that bounces my concussed brain too much), enjoy the outdoors, listen to audiobooks, meditate, do yoga, knit, paint, cook and nap.  Who would ever think you could fill a day with just those activities?  Thank goodness for all the outreach and activities I did in Bend, it resulted in a lot of friends who I could go on walks with and have a decaf coffee and kombucha with since I was no longer allowed to have caffeine or alcohol.

Also, thank goodness, Greg oversaw a home renovation that included an outdoor sauna, jacuzzi, purchased a massage chair and elliptical training machine per my doctor’s suggestion.  Those all kept my mind off of work, feeling good, healthy and relaxed!  So my schedule was wake up 6am, listen to audiobook till 7am, cook breakfast, go for a 3-10 mile hike with the dog, sit in the sauna then shower, make lunch around 11:30am and eat, sit in the massage chair, meditate and then take a 2 hour nap, around 3:30pm paint, listen to audiobook, then cook dinner, listen to the TV and knit, yoga, shower and fall asleep to an audiobook around 7:45pm and start all over the next day.  Later I would find out this was too much (really this was the most relaxing schedule I have ever had in my life I don’t think I did this little when I was four years old) and I wasn’t giving my mind any time to rest, so I would have to take a 15-minute break between each activity and just close my eyes and do nothing.  (Oh my GOD, was that impossibly hard).

This schedule would continue for almost two years until I could begin adding back more computer time, reading and exercise back into my life.  Things were going well and I started to volunteer.  I volunteered at a soup kitchen, Bend Democrats to try and get Hillary Clinton elected, mentoring young women again via Skype and I organized a fundraiser for the Bethlehem Inn Homeless Shelter in town. I had reached almost 6 months with no blackouts and my migraines were slowing to just a few every couple of weeks.

Then my appeal for long term disability got denied, I would have to file a lawsuit to get my benefits (a few more blogs before for more details), Microsoft laid me off unofficially as I was on medical leave so I could not be laid off officially, but as soon as my medical leave ended I would be laid off.  (No stress what so ever in my life…)  Then two days before the big fundraiser I blacked out as I was walking down my stairs.  My husband Greg witnessed this and it freaked him out.

In his words, “It was very disturbing.  Rane was coming down the stairs and then all of the sudden she melted and fell to the ground.  I dashed toward her but was unable to break her fall as she came down on the stairs.  Luckily, I guess, she landed hard on her butt instead of her head this time just a slight hit on the back of the head but she also lost consciousness.  She was having a Vasovagal syncope, I was gently shaking Rane trying to revive her all the while she was unresponsive and her eyes were rolling back in her head.  It was a scary experience, where you feel totally helpless watching the one you love and not being able to help them or knowing what to do. He also told me he was tired of experiencing this stress and that it was causing him to be depressed and affected his health as well.”

Oh, no, everything has to start all over again.  As my husband carried me to bed, I began to cry would this ever end!  This time my doctor had a ‘come to Jesus meeting’ with me and everything had to stop.  No more thinking about jobs and my next steps on my journey of life, no more volunteering.  She asked me did I want to become a vegetable because if I had another serious concussion I could go into a coma or have permanent brain damage.  She reminded me in the last three years I had 13 concussions and my brain may not be able to handle many more.

I had to take my new lifestyle seriously not only for my sake but my husband, I did not want to have him have to take care of me for the rest of my life?  This finally got me to wake up and focus on thinking about this as an overdue sabbatical.  I had been working since I was 10 years old never taking more than 3 weeks off in any given time.  I had been an insomniac, workaholic, and stress junkie for over 30 years.  It was time for a long vacation.

It was time to enjoy life, the great outdoors, painting, reading, knitting and learning the guitar.  Things I had always wanted to do but never had the time.  Spend time with family and friends that I never had time to truly be engaged with since I was always on the road.  No more thinking about work, I always joked I was going to retire at 40 maybe I would really do it.  I realized then how lucky and blessed I was.  I had an amazing husband, great friends, I was super healthy other than a messed-up brain, low blood pressure and blacking out.

I live in a beautiful place that has 300 days of sun and every outdoor activity I could dream of to participate in (at least the one my doctors allowed me to do).  And for the first time in my life, I was getting permission to be selfish.  So many times, I was focused on everyone else but me, who could I help, who can I coach, who can I mentor, I have to do this because they need me.  But now I needed to think about me and for the first time I realized I did not have the option to focus on helping others but had to only concentrate on helping myself and maybe it was time I finally did that.  So, what occupied my time that I suggest for other Type A’s to finally do to help add a little balance in your life:

  1. Painting, start with watercolors very forgiving then move to acrylics- YouTube has all the videos you need to learn-here is one of my favorites.
  2. Download Libby from your app store and you can listen to free audiobooks from your public library: I highlight suggest the following fiction series: JA Jance Joanne Brady Series and JP Beaumont Series James Patterson Alex Cross Series, David Baldacci John Puller, Amos Decker and Will Robie Series, Michael Connelly Bosch, Mickey Haller Series,
  3. Learn to play an instrument, I focused on the acoustic guitar- great free YouTube videos to learn.
  4. Knitting is not just for grandma, it’s actually a lot of fun and gives you something to do when you are listening to TV and audiobooks.
  5. Stop and smell the roses and enjoy the outdoors. Take time to go on walks in nature, your neighborhood and around town.

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