12/31/24

With my incredibly speedy and efficient, might I say magnificent, recovery, I have become somebody that people can rely on. I love being this person. I am strong. I am safe. I am reliable. You can trust me with secrets and ask questions about things you likely wouldn’t ask somebody ‘normal.’ I will probably have the answers to the questions. I have fully accepted my status as a “weird little brain girl” as my friend Jason coined me last year. I love being this person.

I have been asked to come speak with so many people who are brain injury survivors who need to see a ‘success story’ while they are in their darkest times. I needed somebody like me when I was going through it, but I was 1500 miles away from home and had my parents. That was enough, they provided a world’s worth of love and support in person, while my virtual support network sent love from St. Louis, Houston, Boston, Australia, and even Spain. But for people who don’t have the education I was blessed with at CTN, or the support I was blessed with around the globe, I can provide a pillar for people who really need it.

One of those is an old neighbor’s stepdad with a shrinking grade 5 AVM. I met with him last night. His name is Ken. He has had two bleeds. It is a grade 5 because of the location, like mine, suuuper deep in his brain. It is inoperable. It has been treated with gamma-knife radiation. From my understanding, his AVM kind of leaks sometimes, causing a TIA-like Hemorrhagic stroke. He doesn’t lose consciousness, but he is aware that something is wrong. He is a graphic designer. His affected hand (R) is not his dominant hand, thank you God. He is not really aware of where his right hand is, which is different from me. I am aware of where my left arm is. He cannot see beyond the right side of his nose. Ken has what is called a visual field cut. His doctors say this is permanent but I think he will be able to recover some awareness of the right side of his body. What is super interesting though, is that his right hand works extremely well, except for like fine motor things like buttons and zippers.

I instructed him to keep practicing on things like those because even though they are frustrating tasks, they will only get less frustrating with practice.

Then, in the middle of this dinner, I was thinking about this incredible mother I met at a conference I spoke at, also in November.

….

This conference was the Brain Injury Alliance of Missouri’s annual conference. This is held every year to make friends, spread awareness, spread information, and network between brain injury survivors, caregivers, and family members. I spoke on Survivor’s Day on a panel with two other survivors. It was one of the best days and experiences of my life. I got to speak my story in the most raw, unfiltered way to some of my very favorite people, and to about 150 other new survivors in the crowd. Many people who couldn’t attend in person joined on my Facebook livestream I held. I felt so supported and loved. It was fabulous. After speaking I was standing outside with one of my panelists taking a ~smoke break~ and this woman comes rushing out to talk to us. She tells us she’s from Atlanta.

She tells us that she and her son Sacory have been in St. Louis for two months at the beginning of November. Sacory got hit by a car in September and was taken to Barnes Jewish Hospital, where they did not perform emergency brain surgery to relieve the pressure on his brain, so as a result, he had two massive hemorrhagic strokes and three seizures. All of this was very traumatic to his body and his brain, but he is young, I believe she said he was 26 or 27 ish. Trish, my panelist that I was outside with, was extremely sympathetic, but couldn’t offer a whole lot of support because she was only in town for the conference and was leaving the next day. I gave Shamarla (the mom) my phone number and some information to help her immediate situation. I told her that I’d love to come visit and that I’d be checking in on them periodically. Now that we’d met, I was in their corner. They have some family in St. Louis, but brain injuries are a very niche community, you have to know somebody with one to have any experience or to learn about it.

Luckily, I’ve been around them for a long time. I’ve seen brain injuries of all shapes, all colors, all kinds. Nothing surprises me, therefore like I’ve said previously, I am a judgment-free zone, chock full of all kinds of knowledge and love that I want to spread. I have been checking on Sacory and Shamarla every couple weeks since the conference, not trying to overwhelm them. He walked with a lot of assistance on November 22. She told me on December 30 that he was kicked out of the hospital by his insurance in I suppose early December. They live in a house. He goes to therapy three days a week. I am planning to go meet with them, and meet Sacory for the first time next week.

I love that I have progressed and developed into this person who people can turn to for information and support when they need it. People who have brain injuries are so often not as blessed with the knowledge and information I was literally pumped full of at CTN. They also gave me the trait of needing to find out the reasoning or rationality behind anything unknown, so Google is basically my best friend. If I do not know the answer from my own brain, it is fairly simple to find it.

Thanks for reading ☺MK