Reflections and recap two years later
Today is anniversary two of my brain injury. January 5, 2017 is a day emblazoned in my mind as it completely changed my life. I’m so grateful for my dedication to healing, my medical team that guided me, my friends who stepped up to feed me, cook for me, clean for me, drive me to my daily appointments, and for all the love and support the village showed me. I’m thankful for my aunt and uncle who took care of me and my uncle who drove me to my brain stem laser appointments twice a day for two weeks, and their love given at a time I needed familial love the most. I’m grateful to my dear friend Carole who let me live with her when I was homeless. I’m grateful to the person known to me who wishes to remain anonymous who believed in me enough to help me get back into my own living situation. I’m grateful to the Brain Injury Hope Foundation for their grant which helped me with the deposit required for my own apartment. I’m also grateful to the handful of people who loaned me money when I absolutely needed it and for Brad and TJ who helped me move three times when my living situation necessitated it. I knew getting my own place was essential to my final healing and I was right. Trust in yourself.
From the beginning
At the time of my accident, I couldn’t do much for myself. I crawled to the bathroom when I couldn’t walk. Once I saw my neurologist/concussion specialist the third week after my injury and my occupational therapist, we started working on the vestibular system, so I could walk without falling. I spent the first month on the couch because I couldn’t “do” anything and the pain in my head was not just excruciating but debilitating. I spent the time drifting in and out of sleep. All noise and light hurt like you can’t imagine. It hurt to talk. I was antisocial. I had no desire to engage with people. For those of you who know me, I’m sure you’re either laughing, in shock, or think I’m lying because you know how much of an extrovert I am and how important engaging with other people is to my psyche and overall happiness. People recharge me. But after my accident, my personality immediately left me and the second month my brain was well enough to know that I missed my personality. I missed being “me”. My neurologist was confident I would get my personality back and I took a leap of faith, but it was hard to imagine my vibrant personality which was dormant would ever return.
I’m grateful I initially had a horrible experience at Rose Hospital emergency department because that led to the director taking on my case personally, using it as a teaching moment for the PA who prescribed a dangerous drug to me related to my previous heart condition, and getting me in to see Dr. Cheryl Melick, the concussion specialist who has since retired, and setting me on my path to #ReclaimMyLife. Together, her direction and expertise coupled with Tonya, my OT, and my commitment and determination to #ReclaimMyLife, we and other supporting medical providers made this happen.
Living with a TBI two years later
Today, the TBI remains part of my life. I still have limitations. My memory lost things. When I realize a memory is gone, it’s just missing. I will be talking and reminiscing with someone and then something is mentioned, and I am unable to recall that memory, try as I might. It’s like opening a folder on your computer only to discover all the files that were once there have disappeared! I sometimes have trouble with short-term memory and word finding, which as a communicator and writer makes things interesting. From time to time, I have seizure activity stemming from “overload” which is nothing compared to the workload and life I used to manage. Overall, I’m high functioning and most of the limitations I have are what doesn’t feel right for my body on that particular day. I have to back off from activities and even back away from relationships if they cause too much stress. I am still sensitive to noise and light. I can’t ride Light Rail—something I learned the hard way which caused a complete shutdown of my brain and seizure activity. My neurologist told me before she retired, I won’t know until I know but the only way to find out is to see what happens. So, I adjust based on my brain’s reaction to whatever I am doing.
Missing hot yoga
I have not been able to return to hot yoga and that I miss tremendously. I’m doing the 26 static poses at home in unheated environment and at least back to my mat and that feels good. There are things I miss about my life before TBI and there are things that I cannot do now but I no longer desire—including going out in the evening with friends. I much prefer a quiet night in at home and go to bed early instead of the night life.
Adjusting to my “new” normal
Life after TBI is an interesting life for sure. I keep ear plugs in my purse. I don’t entertain like I used to do. I loved to throw dinner parties and host gatherings. The first book club I hosted in my new apartment put me into immediate overload and I was overwhelmed. Instead of delighting having friends over, I ended up needing to take a “brain break” and leave my guests while I took a 20-minute rest in my bedroom. I’ve hosted a dinner party since then and I’ve gotten better but it’s still not seamless and 100% enjoyable as it once was. Now, when someone asks me to do something, I think about the environment in which the activity takes place—something I never considered before. Then I make a back-up plan if I go and it isn’t going well for me. I want the people around me to know it’s my injury and me taking care of myself versus me being rude or antisocial.
During my active recovery, before my neurologist released me from active care, I made two major decisions which became mantras for me: 2017 was about physical recovery and 2018 was about financial recovery. To date, I upheld my determination and achieved both of these things. I dedicated 2017 to my physical come back so I would be well enough and strong enough to return to work in 2018. I dabbled in my occupation doing some small websites in the summer of 2017 but could only work a couple of hours a day before my brain stopped functioning. Plus, I had to relearn what was rote prior to the accident. Today, I am happy to report in 2018 an agency hired me to be part of a seven-person team to rewrite a technical website for a national brand in six weeks. I managed to write my pages while also maintaining work for a start-up company. Then when that project ended, I built my author website, this one you’re reading, and put together my plans for completing my books including #ReclaimMyLife which is all about my journey to do exactly that.
Fate and intuition merge
2018 also brought an interesting twist to my life—an opportunity to help someone who had a brain tumor and had the same symptoms I did during my injury: Cathy listed to the left when she walked as did I. Quickly, I became Cathy’s primary 24/7 caregiver over the summer. As the summer neared the end and Cathy was believed to return home in remission, another big opportunity arrived for me: an agency hired me to write for IBM Watson Health. I juggled both helping Cathy and meeting deadlines for IBM Watson Health. When Cathy’s cancer took an ugly turn, I helped her get the proper care she needed as I was no longer able to care for her since she needed a higher level of care each day. Cathy’s family orchestrated a plan to get her out of the skilled nursing center just a few days after admission and back home to Telluride. I took the journey with them in the motor home assisting Cathy as we took her home to die in the place she loved, her beloved mountains, not knowing if she would even survive the trek. Sadly, cancer took Cathy away from us just days later as the workload with IBM was growing. I immersed myself with IBM projects which helped with my grieving and gave me a new focus and kept me so busy through the end of 2018 I wasn’t even able to get away to ski! Plus, after Cathy’s death, I signed up and was approved to become a tutor for Varsity Tutors and have four students I tutor: two are college age and two are elementary. I tutor public speaking and business writing for the college kids and math and reading to the elementary kids.
Looking ahead
Living with a brain injury is a life-changing event. I am grateful for my level of healing even if I’m not at 100%; there are so many with BI who are not as fortunate as I am. I have been able to return to my love, writing and marketing, and make a living at it once again. I am physically able to ski, another love. I can cook and bake again and find them as enjoyable as they once were prior to my injury. I can live independently and when I do another “first” after my injury, I am absolutely elated and filled with pride and satisfaction—and remind myself how far I have come.
Thank you for your love and support through this life-altering and permanent injury. I’m especially grateful for my girl Lucy who is loyal and dependable and gives me signs when I don’t recognize or stop to recognize the signs I need to stop and rest.
As for 2019, my focus is to finish and publish the books on tap as well as continue my financial recovery. Not working in 2017 was difficult financially and so it will take a while to repay all my medical bills and recover financially from the catastrophic year of 2017. Yet it doesn’t dissuade me at all or bring me down because I know that it was part of my journey—and the only thing I can do about it is to continue to focus on my health and physical recovery as well as my financial recovery.
In the 1990s, I was part of a mission trip to an Ojibwe Indian reservation. There we learned things happened “at the right time” not necessarily at the “prescribed or assigned time”. With my continued practice of mindfulness (going on 11 years now) and truly living in the moment, I reflect on those wise words. I know and trust everything happens for a reason, even if we don’t know or understand why. I know this much. I am present in every moment and not only that, I’m grateful for every moment I experience.
Thanks for being part of my journey.
Love, Jena
