As we have been traveling the country many people have asked I repost my story on Traumatic Brain Injury. There are so many workaholics who just ignore their body communications like I did, that they requested I share my story and push people to listen to their bodies and take more breaks. Maybe you even want to consider what Greg forced me to do, sell our home and hit the road and leave the working and volunteering world for an extended break. So the next 3 blogs will be about my TBI and how we got to become full-time Nomads. I will do a few revisions to make it more relevant to those on the road and how my life has changed since these posts were a few years ago. Then we will return to our road trip stories and pictures. We will post about how to pack most efficiently, great campgrounds in Montana and the amazing Beartooth Highway! Below, is from Greg and what it is like for a spouse living with a loved one with TBI who won’t accept their disability.
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:
- 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.
- 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.
- 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 3 part series, keep coming back to learn how to manage life with TBI or what not to do so you don’t get TBI.
*Hackathon definition from Google- an event, typically lasting several days, in which a large number of people meet to engage in collaborative computer programming.