2024
Profound loneliness.
That is the best way to describe my personal struggle with post concussive syndrome.
The 2024 calendar is dedicated to those who can relate.
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When the world opened back up after the first massive wave of Covid, my brain decided to shut my body down. People were celebrating being together again & I was alone. This was no one's fault. It simply was and still is the nature of my particular brain injury- noise, light, stimulation, movement can all send me spinning into symptoms for days, weeks, or even months at a time. It takes a physical toll on my body to be with people, and that lends itself to a lot of loneliness.
Please don’t misunderstand. I am not talking about introverts and extroverts. I am talking about real physical pain that is produced from outside stimulus as a direct result of my injury. This has been my reality since 2021. The brain is an amazingly complex organ. Therefore, it takes a very, very long time to heal. For most who develop PCS like I did, healing will not look like returning to "life before." Instead healing will be tolerating a few more minutes of stimulation than the day before. Side note: I am beginning to try to come to terms with the idea that my brain may never work the way it used to…but I am not there yet, so that is a story for another day.
About 18 months after my PCS diagnosis, I was invited to a group that was beginning to form in North Alabama. A small group of caregivers & survivors who were dealing with the effects of brain injuries & strokes. There were not very many of us. We sat in a tiny room in the local library. We took turns saying our name and if we were the survivor or caregiver. I couldn’t hear anyone else’s name because I was so focused on remembering “my name is Emily, my name is Emily, my name is Emily.” I had figured out that secretly tapping my fingers together could help me remember something short term. So while others introduced themselves, I sat there and tapped “my name is Emily, my name is Emily, my name is Emily.”
The room at the library got quiet and Mom nudged my arm. I looked up to see all eyes on me. The phrase I had just rehearsed over and over again was gone. What am I supposed to say? Where are we? I don’t know what to do. I wanted to crawl under the table & never come out. But to my surprise no one said anything- there were no jabs or mocking tones of “hellloooooo.”
They just waited.
They were patient.
I looked at my mom for guidance about what to do. Before she could respond, the meeting facilitator interjected, “Emily, can you tell us your name?” I stumbled over the word. “Can you tell us if you are a brain injury survivor or a caregiver?” Again, I stumbled over the words. “Thank you, Emily. We are glad you are here.” The man sitting next to me leaned over and said “It’s nice to meet you.”
That was the beginning of my experience with this group of survivors. It has grown and changed a lot since then. But I am so thankful for them. I’m thankful for a place I can go where people don’t look at me funny when my right side twitches or think I'm nervous when my arm shakes. I’m thankful for these people that don't jeer when I unknowingly repeat myself. I’m thankful for this small group of people that “get it.”
One of the harder parts of a brain injury is the complexity of the brain itself. Meaning, no two injuries are alike. The symptoms and struggles that we all deal with are vastly different from one another. But even in that, there is a unique bond. Everyone in that little group is so different and yet our injuries unite us.
I still have days of feeling lonely when my symptoms keep me from being with friends or family. But, I no longer feel like I'm the only one. I know there are others out there in the world with an injury just as confusing and frustrating as mine.
Praise the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all comfort. He comforts us in all our affliction, so that we may be able to comfort those who are in any kind of affliction, through the comfort we ourselves receive from God.
- 2 Corinthians 1:3-4
Like last year, the 2024 calendar has individualized dedications. But as a whole, this 2024 calendar is dedicated to those who deal with some of the same struggles that I do, and yet they persevere. This 2024 calendar is for them, the warriors whom I call "friends."
If you are in my area and would like to know more about this group, please contact me.
If you are not local and would like a group, I suggest looking into Hope After Head Injury at https://hopeafterheadinjury.com/ This is a great group that meets via zoom with survivors all over the world. The leader, Cristabelle, is such an encourager. She has been in this fight for a long time. Her website offers lots of resources that are worth looking into, even if you don't want to join a group.
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