Tag Archives: grief

6 Year Reflections

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.”

Photograph of a blazing orange sunset through coastal underbrush and plants. "This year, there is a flicker of hope amid the grief."

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.

Watercolor painting of a stone path winding through a wooden arch in a fence, windflowers all around. "There is a path forward."

“There is a path forward.”

(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.

“The hope is there, burning low and persistent.”

Photograph of the author standing before a snowcapped Mount Shasta, glowing purple in the evening light. "The hope is there, burning low and persistent.:

Please Note:

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.

Forging Identity

“When a defining moment comes along, you define the moment, or the moment defines you.”

~ KEVIN COSTNER

Many people have a defining moment. Some have multiple. Whether for better or for worse, this moment separates who you were from who you are. In a single second, a fault line cracks, and a chasm appears. There is before, and there is after. 

“There is before, and there is after.”

The birth of a child, the loss of a loved one, a proposal, an injury, a diagnosis – these are all defining moments. While they all come with an evolving persona, defining moments of dis-ease can be the most hard to rebound from. You are left bare and wide open, vulnerable and so very lost. For me, a concussion that never healed, a second head injury that compounded the problem, and a trip to the ER. Once the initial shock of such a moment has worn off, there is just you. But who are you anymore?

When your life changes, your identity changes. Some things are lost, some shifted, some paused, and some are gained. But who you are now doesn’t just appear. The things lost or paused leave gaping holes in your heart. You don’t feel like yourself. You don’t really know who “yourself” is. This isn’t me. I find myself saying this in the lowest moments. But this won’t be you forever. You will grow and become and keep adding to who you want to be until you have spun a web that will hold you safe inside. 

“You will grow and become until you have spun a web that will hold you safe inside.”

We are a sum of everything that is meaningful to us. When we are forced to let go of some of those things, even temporarily, it can be crushing. Under most circumstances, you can’t just immediately be okay with the losses and no longer claim them as a part of you. Grieving the loss is part of healing. 

No, a new identity doesn’t just appear. It must be crafted. You must place yourself in the fire, feel all of your feelings, and forge new pieces of yourself. You must drive the hammer and fight through the messy parts until you are ready to quench the blade and reveal a masterpiece. 

A defining moment is an opportunity. An opportunity to dive into yourself and decide what parts of your identity serve you and what do not. It is an opportunity to choose who you want to be. 

Carve away the parts of yourself that do not elevate you. I am working to chisel down the perfectionism, the codependency, the overachieving in my life. Like a sculptor to clay, let it fall away. Center yourself like a potter on a wheel. And fill your heart with new things. 

“Like a sculptor to clay, let it fall away.”

If I could offer one piece of advice, it would be this. Learn a new skill. Always watched from the sidelines but wanted to try? Go for it! That old hobby that you never had time for until now? Start it up again! As long as you are not putting your health in jeopardy and it is within your power, the sky’s the limit. Any time someone learns a new skill that they are passionate about, they add to their identity. So when you feel lost and don’t know who you are anymore, learning something new can be incredibly grounding. 

Since getting sick, I started drawing more. I’ve always loved drawing, but didn’t do it very often. I’ve started writing more too, hence this blog. I’m learning how to surf. It drains my body, but it feeds my soul. 

“It drains my body, but it feeds my soul.”

When I feel the most lost and my heart aches for that which is out of my reach right now, any one of these things is a powerful outlet for me. I finally have the time to learn what I really want in life. It is hard and it is painful, but it is worth it. 

It is healthy to grieve the loss of your old self. The losses you grieve the most – they will always be a part of you. Just because a soccer player retires, that doesn’t mean they are no longer a soccer player. Just because a hiker moves to the flatlands, that doesn’t mean they are no longer a hiker. What matters is what you hold in your heart. You are the blacksmith of your own life. Let the process happen. Honor your feelings. Know that while you can’t go back to who you were in the “before,” who you are now is incredible and worthy and beautifully whole.

“You are the blacksmith of your own life.”