Redefining Hope: When New TBI Challenges Arise

In 2018 I published my book, Head of Hope: A Resource & Empowerment Guide for Living & Thriving with at Traumatic Brain Injury, feeling confident that my life with a traumatic brain injury (TBI) was finally on the upswing after five years of challenge and struggle. My therapeutic bodywork practice of 10 years was flourishing. I was a published author. My professional dreams were coming to fruition. My body, however, had other plans.

It wasn’t long after writing the rough draft of the book that the chronic fatigue I’d experienced since my TBI in November 2013 really started to get worse. With the beginnings of a consistently full client schedule, I couldn’t seem to do much else besides lie on the couch and go to work. The once regular workouts at the gym became irregular, and I kept getting lightheaded while working out, even doing relatively easy exercises (while keeping my head above my heart). Gone were the days of working out early in the morning (ie by 6 AM) or going to hot yoga for a 6 AM class, let alone at all since my body no longer tolerated the heat. Even going to a different (not hot) yoga studio for a class for “Seniors and Others” was too much even at 10 AM on one of my days off. My time on the couch every day continued to increase. The fatigue became debilitating, and after hours of research online, I eventually realized that I likely had dysautonomia (which you can read about in June’s post here) because of the TBI. It had been casually mentioned by members of my healthcare team back in 2014 and 2015, but no one seemed to imply that it was anything to investigate further or do anything about.

Fast forward to 2020. In January 2020 I closed by bodywork practice of 12 years, ending my 14-year career, just after winning the Best Alternative Medicine Practitioner award in my city (in which there are literally hundreds of amazing holistic healthcare providers) for two consecutive years. Weeks later, the COVID-19 pandemic hit. My dysautonomia symptoms continued to worsen and I didn’t know what to do about it, other than what I found on the super informative Dysautonomia International website. My primary doctor had told me to increase my salt intake, but never said by how much. I tried adding in more but didn’t notice any difference in how I felt. Many days per week were (and still are) spent primarily on the couch, no matter how well I slept. My appetite dwindled, as did my body mass (and I was already a petite person). I couldn’t think. I couldn’t concentrate. I got lightheaded just sitting, and almost every time I stood up. I pretty much couldn’t do anything I loved doing, let alone the things I needed to do, at least not quickly since I had to lie down and take long breaks frequently. Now that I didn’t have a busy practice to run, it was hard to keep my mind off of how miserable I was. I finally got in to see a dysautonomia specialist in October 2020. Not much came from that visit other than validating that, yes, I do have a form of dysautonomia, and to try a few things like compression stockings and salt capsules (both of which did nothing), and then later, a medication (which is still a new experiment for me at this time). Nothing has really changed or improved. If anything over the past year, my symptoms have gotten worse, despite being super proactive and educated.

I’ve been quiet on my blog and social media accounts for the past many months because I was embarrassed and felt like a hypocrite. How can I be writing about hope when I feel like shit and my life has been reduced to lying on the couch most of the time? Why would anyone listen to me, and what can I possibly offer to anyone else struggling with their own TBI? Upon greater reflection, I realized that just because my has situation changed for the worse over time, doesn’t mean that I am any less valuable, or that I can’t offer validation, inspiration, advice, and encouragement to others who are struggling, too. Whether your health and life circumstances change briefly or for the rest of your life, you are in the best position of understanding and empathy because you are living life, too, in the thick of life’s the ups and downs. Healing is not a linear process. Sometimes our physical bodies face challenges that get better, and sometimes they get worse. That is just life, and even in the worst times, our lives are meant for living to the best of our ability in the moment. Healing doesn’t necessarily mean physical improvement of symptoms, although it can certainly include this. Healing can be more about the healing of your heart and spirit.

I once again looked up the dictionary definition of hope. One of its many definitions, as a verb, includes “to trust.” What if in my own life I redefined hope from this idea that everything will be better (which it obviously could and might), to trusting that I am and will be okay no matter what happens? If or when new challenges arise for you on your TBI journey, no matter what aspects of your life are affected, what if you decided to trust that you might be okay after all, even if you don’t feel that way in the moment? Can you plant the seed in your subconscious that you are okay, such that it could come to fruition someday: tomorrow, or ten years from now? How does this idea of hope as trust, as opposed anticipating that the future is rose-colored, change your view and how you feel about yourself, your challenges, and your life? For me it seems more realistic and less idealistic because shit happens (which you know since you are here reading this). Sometimes things get worse before they get better, and sometimes things just get worse. We might not have control over the things that get worse, but we certainly have control over how we respond to them. Believe me, I’m not always the most upbeat, optimistic person. Especially when dealing with clinical depression on a particular shitty day, even realistic optimism seems unthinkable.

The greatest takeaway from these many months of “going dark” is that it’s okay to be human, and for us and our stories to change. There’s no need for me to be embarrassed about my health challenges getting more challenging (to the point of applying for disability). It doesn’t mean you won’t take away really useful information from my book, blog, or social media content. It doesn’t mean you will get any less validation. It means that you will get someone advocating and cheering for you who is equally human and vulnerable, who feels the grief of all that has been lost and changed because of a traumatic brain injury, who feels the joy of having an occasional “good day,” and understands what it’s like to go on this journey. No, I don’t have it all figured out, but I’ve learned a lot over the years, and continue to learn so that I can help you and myself at the same time. You’ll always have my support and encouragement, and that’s something in which you can definitely place your hope and trust.