Anyone who has suffered a concussion knows the frustrating amount of uncertainty there is in the recovery process. Although physicians do the best they can to set expectations about recovery, sometimes the individual nature of concussions seems to far outweigh their similarities. I don’t think this is necessarily the case, but I have definitely felt that way at times.
When I suffered my first concussion in 2008, baseline testing and concussion screeners weren’t as widely used as they are today, even at the college Division I level. The amount of information that was readily available to the public about concussions was quite limited. This lack of information not only made the diagnosis confusing for me, but my recovery process felt like I had been dropped in the middle of a forest, blindfolded, and told to find my way out.
Even though we now have a better understanding of concussion recovery, the fact remains that it is often unpredictable. The uniqueness of recovery for each person should be something we embrace and expect. Regardless, the fact remains that recovery from a concussion is often quite challenging. The great news is that there are more resources now than ever!
Given my experiences during my own journey, I have come to realize that my concussion recovery taught me invaluable life lessons. First, I learned the importance of listening to my body. While there were certain things I was told to avoid as I recovered, other things were left up to my discretion. For example, I was still a member of the soccer team, but I was not required to attend team functions (e.g., team practices, games, meetings). Of course, I attended everything, including preseason “breakfast club” running at 5am.
I’ll never forget our home game against the University of Virginia. Somehow, I managed to fall asleep on the sideline by the team bench. The combination of my fatigue with the hot, sunny Miami day led to a sideline nap. It was an example of how sometimes my symptoms could get the better of me. Although my symptoms could be overwhelming, over time my awareness about my physical, cognitive, and emotional symptoms increased. By paying attention to them, I was able to connect how my actions either contributed to or decreased my symptoms. This information gave me a level of control as it allowed me to make better decisions for myself.
Next, I learned the importance of flexibility. Not the physical stretching, sit-and-reach type of flexibility, but mental and psychological flexibility. While this included flexibility with treatment and recovery, it also included my plans for the future. For me, that was graduating from college and pursuing a professional soccer career. It took me years to accept that playing soccer was no longer an option and it took even longer for me to figure out what I would do instead. During that time, I was very focused on what my life could have been instead of accepting what it was.
The funny thing about imagining what “could have been” is that the imagined scenario (in my case I was a professional soccer player) would be pure bliss with little to no difficulties. My tendency to think about only the best parts of what could have been while focusing on only bad parts of my current situation is common and I don’t fault myself for that. This was something I needed to experience. It showed me that I could spend all of my time wishing that things had gone differently or I could accept reality and spend my time figuring out what was next. I had to learn that it was okay to wonder “what if,” but getting stuck in the “what ifs” wastes valuable time.
Third, I learned the importance of self-advocating. I had doctors doing their best to help me, but their ability to do that relied on me telling them my experience. In addition to being open about my symptoms, there were times when I wasn’t feeling a benefit from an intervention/medication or it was actually making me feel worse. In those moments, it was my responsibility to communicate that to the doctor. In some instances, I agreed to continue treatment for a longer time, while other times, I felt that I had already waited long enough and it was up to me to push for a change in treatment. The doctor wasn’t living my day-to-day life, I was. In those moments, I learned to stay strong and make my case for an immediate change without allowing them to convince me otherwise.
In addition, when the limits of medication made themselves known, I decided to try a different route. Fortunately, I had received mental health treatment earlier in my life, so I was open to psychotherapy. While my openness to psychotherapy made engaging in treatment a bit easier, I still had to fight my pride. As it turns out, that was the best thing I could’ve done. I ended up receiving the best treatment of my recovery – psychotherapy combined with heart rate variability biofeedback. The skills I learned through this treatment continue to help me today.
Over the years, I continued psychotherapy and developed a healthier understanding about the positive impact that I had on my recovery, especially by listening to my body, being flexible, and advocating for myself. The importance of these lessons has been highlighted recently as I face life’s next big challenge.
Life’s Next Big Challenge
Last year I started noticing that my legs were extremely tired after climbing the stairs or if I had to walk up a hill. It was a burning pain that went well beyond the feeling of being out of shape. I also started to notice that I was being clumsy much more frequently (e.g., dropping things, running into the side of a door frame, hitting my leg on the corner of a table). I was also very tired, which I thought was due to my internship. A few months later, I broke 2 glasses within the span of a week. It was unusual enough that I asked my neurologist for an MRI. He obliged and in April I found out that the scan showed a hyperintensity in the periventricular white matter on the right side of my brain. In other words, I had a brain lesion. This was the first time I had ever had a finding on an MRI.
I knew something was going on, but my neurologist didn’t seem too concerned. I decided to ask around and was referred to another neurologist who specializes in demyelinating disease. My first appointment was at the beginning of June 2017. After a neurological exam, blood labs, skin biopsy, spinal tap, and MRIs of my brain, spine, and optic nerve I at last had an answer. On August 28th, there were enough clinical markers for my doctor to confirm a diagnosis of Relapsing-Remitting Multiple Sclerosis. I have MS.
I wasn’t surprised, because I knew something was going on and I am quite familiar with neurological conditions, but it was still surreal. I continue to try to wrap my head around my new reality and adjust to the circumstances. Fortunately, we caught my MS very early, which is very important because the treatment is preventative so the earlier that treatment is started, the better the odds are of minimizing progression of the disease.
Since being diagnosed with multiple sclerosis, I have been reflecting on how this experience has benefitted from my concussion recovery experience. First, listening to my body led me to ask for an MRI that revealed my brain lesion. Second, advocating for a second opinion resulted in connecting with an MS specialist who knew how to proceed. Learning from my concussion recovery led to an early diagnosis of MS that gives me the best chance of staving off this disease for as long as I can.
Most notably, the psychological and cognitive flexibility that I developed during my concussion recovery, and have continually worked to strengthen, allowed me to quickly recognize and accept that there are aspects of this situation that are within my control and others that are not. In addition, my willingness to be honest with myself throughout the diagnostic process allowed me to begin to adjust to the idea of having a chronic illness and proactively research MS and treatment options.
The day I was officially diagnosed with MS, I was prepared to have a well-informed discussion with my neurologist and start weighing my options for treatment. In addition to deciding to start medication, I have changed my diet, increased my physical activity, and started going back to psychotherapy.
All of that said, as my colleagues were heading to their post-graduate positions, many as postdoctoral fellows where I had hoped to be, I once again found myself facing an unexpected life-altering medical diagnosis. The familiar waves of frustration about the unfairness of life came rushing back, followed by the acknowledgement that life certainly isn’t fair. The unpredictable nature of life can be bad and good. While having multiple sclerosis wasn’t in my plans, the reality is that attaining my doctorate wasn’t either until I was accepted into graduate school – something that wouldn’t have happened if I hadn’t had to go through concussion recovery. As I continue to adjust to having multiple sclerosis, I remind myself that I have done this before and I can do it again. This time, I am more prepared than I was when I was diagnosed with my first concussions. I know I need support and I am being as proactive as I can be by putting my health first.
Finally, I have learned that I don’t have to like something in order to accept it, but I have to accept it in order to do something about it. I’m not happy that I suffered multiple concussions and had to endure the recovery and yet, I did it and I am better for it. Similarly, I certainly don’t like that I am faced with a chronic illness, but we all have our challenges and this is the next one for me.
All I have to say is… Challenge accepted.
Co-Founder Concussion Connection