On this day six years ago, I got my first concussion playing middle school soccer. Little did I know at the time how it would change my life forever.
Today is my 6th concussiversary (a word I created to mark my concussion anniversary). This time of year is usually quite hard for me as I look back on all that I’ve suffered and lost since that fateful day. It is a day usually surrounded by feelings of grief and a level of helplessness — helplessness at the lack of understanding, the lack of answers, the lack of forward progress.
The brain is a very complicated organ. While there are a number of brain-related specialists, they all deal with small corners of the greater picture. Concussion specialists deal with acute injury and inflammation, neurologists with permanent structural alterations, and chronic pain specialists with managing symptoms.
The Western medicine route did not work for me, and alternative medicine did not provide me enough relief. My concussiverary marked simply time passing — sure, an homage to my continued strength, but it long ago stopped feeling like a reflection of healing. Until now.
(Read more about my TBI journey here.)
This year, there is a flicker of hope amid the grief. For this is the first year that I know the full story. This is the first year I have answers. I now know that my concussion likely triggered underlying Lyme disease and co-infections. I was continuously told by doctors that “sometimes concussions just take a while to heal,” month after month, year after year, with no forward progress. I am now filing in the gaps of all of the symptoms that never quite made sense back then, that I attributed merely to the fact that our brains affect so many of our bodily systems.
I now understand that the persistent low-grade fever that spikes during migraines, the extreme heat intolerance, the face rash, the night thirst, the blood sugar swings, the easy bruising and the inability to heal were all manifestations of these underlying illnesses. For years I would try to explain to people how my pain sensitivity would “cycle” to the point where at it’s worst I couldn’t even hold a hot cup of coffee. I now recognize these as small flareups of my underlying conditions.
(Read more about my diagnoses here.)
I’ve found that many “survivor” communities across a variety of illnesses and traumas tend to be quite niche. Having originally been diagnosed with a minor concussion, I never really felt quite like part of the hardcore TBI (traumatic brain injury) community, even as I found myself in a similar rehab position five years down the road as someone with a potentially more serious original injury.
And just as I began to accept my post-concussion journey as a TBI, I learned that tick-borne illnesses played a major role in my story as well. At first, I felt pulled and pushed in my mind between the two communities. I felt self-outcast, like I didn’t really “deserve” to be part of either. I didn’t feel like part of the TBI community because it wasn’t just a brain injury that upended my life. But I had (in my mind) only been truly “sick” for less than a year at that point. I felt like the two were mutually exclusive, and therefore felt excluded from both.
But I soon realized that it doesn’t have to be this way. I had a brain injury. I struggled (and still do) for years with post-concussion syndrome. I also have had Lyme and co-infections at least since that injury, probably dormant for many years prior. I can allow myself to be part of both communities for the full six years I’ve been fighting both. It doesn’t need to be one or the other. Plus, it is not uncommon for a concussion or another trauma to trigger underlying Lyme.
At the end of the day, I believe that while it is nice to connect with people who have parallel stories to ours, our experiences on this planet are all so unique, and yet in essence all very similar. Similar perception, similar feeling — that’s what we connect over. Emotions tie us together, and the emotions experienced across many illnesses and traumas can bond us in this shared human experience. Chronic illness, autoimmune disease, tick-borne illness, brain injury and more — we can all find value in connecting with each other and finding parallels in our stories.
Today, the constant headache I have still spikes into the worst pain I experience. And I may be more unwell now that I have been on any past concussiversary, but I have fought my way onto a road to health. I am no longer sitting in a field, search desperately for wildflowers. There is a path forward. There is still grief for all that I have lost and suffered. But the hope is there, burning low and persistent. Sometimes it has to get worse before it gets better. And with my support system behind me, I will continue to put one foot in front of the other towards reclaiming my health.
We can all grow and improve and heal in some way, even just in micro amounts. I believe that an additional aspect of the hope that I am feeling this year has to do with the emotional healing I have done, and continue to do, over the last year.
If you have a brain injury with no underlying conditions, I want you to know that there is hope to be held in your heart too. Physically speaking, our brains are beautiful and neuroplastic and we can heal for longer and far later than doctors once believed. Keep pushing, keep searching. Even if it is just our outlook on life, we can improve our own lives. Don’t give up on yourself. You are worth it.
If you would like to know what I tried along my journey, please reach out and I am more than happy to share.