I got some asks about my sister and answered one, but answered it privately on accident, so I got them to send the text back over so I could post it for Posterity™. So here is an explanation of what happened with my older sister:
My sister got bacterial meningitis when she was a few months old and as a result has severe brain damage and a seizure disorder. We’ve tried for years to control her seizures but therapy, an implant, and no amount of heavy duty seizure meds could stop her from having bad seizures that resulted in a flatline of brain activity for a short time post seizure (note: these are the BAD kinds of seizures that are VERY risky)
It got to the point where brain surgery was the only option. So last summer (2015, summer before my freshman year of college) she underwent a Corpus callosotomy at Vanderbilt. This means they split the two hemispheres of your brain so that basically, if a seizure starts causing problems in one area of her brain, they are isolated to that hemisphere of the brain, whereas before they would “generalize” (become the life-threatening full-body seizures). It’s kind of like quarantining the seizure to one half of the brain. Which was awesome!!
But what was not awesome was recovery. They thought she’d bounce back, but her “neuroplasticity” was not as good as they initially thought, so she didn’t. She didn’t wake up for about a day and even then could only stay in a state of semi-consciousness before sleeping again. She had also gone completely mute, which was also not expected or normal. Along with that, she could no swallow, walk, stand, or even sit up on her own.
She moved with my mom to an amazing facility in Atlanta called Children’s Hospital of Atlanta (BEST PLACE EVER), which conveniently was also the city I was moving into for school. So me and my dad and my sister visited as often as we could and Madison got better every time, but it was sad to see her struggle so so much with things that used to be easy for her. I bought elastic headbands in bulk on Amazon because they helped her feel super cute and covered up the incision when it was healing (her favorites were yellow, because that is her favorite color). The Madison we knew was still in there, but her brain had to remap all the functions that it knew before it got separated into two halves. She also had some of those split brain symptoms, where two halves of your brain act independently–even today she’ll sometimes reach for a pencil with two hands instead of one, and then get confused when she realizes her hands aren’t really agreeing.
I remember when I managed to get her to talk for the first time after surgery by playing a game she enjoys–basically, I make her laugh by acting silly. I call my mom or dad by someone else’s name (like, call them my grandparents, or or dog’s names, or Santa Claus, whatever works) and they would look at Madison as I said this, she would look at them, and they would be like “umm that’s not my name!!” It sounds silly, but the options in a hospital room are pretty limited, and this game LITERALLY never fails to make Madison COMPLETELY lose it laughing until she can’t anymore. Plus, you can keep going forever, just calling people by silly names. Before surgery she usually would go “no, that’s mommy!!” or whoever it was, but since she couldn’t speak, she just laughed. But one day I pressed for an answer. I pointed at my mom and called her some silly name, which she and Madison laughed at, and then I said “wait, that’s not it? Well then what is it?” it took a lot of encouraging and a while for the words to come to her, but she managed to say “mommy!”. I did the same with my dad and she said “dad!” At this point, this was the first time we heard her speak since surgery, and since there werent any guarantees, up until then we didn’t know if she’d ever be able to speak again. But she DID. Me and my mom couldn’t stop laughing, and all of us were all crying too. It was such a special moment, I love telling that story. And there’s a lot more, like the first time she was able to move her left side of her body again, the first time she was able to stand, the first time she was able to walk the whole floor on her walker, the first time she went up the stairs in physical therapy…
Anyways this is way longer than this probably warranted but even though this was a year ago, I still have so many FEELINGS. Madison still has some seizures after her surgery, but they are not “generalized” and mostly occur during her sleep, so they’re basically harmless. She’s also gotten her seizure medication dosages lowered significantly, which is amazing because they were REALLY heavy duty, the side effects were “feel like you have the flu all the time, and also feel tired 24/7”. Before this year, we had never known a Madison who wasnt on these medications, and she is so energetic and happy!! The surgery has dramatically improved her quality of life and helps us all sleep easier because it means that its impossible for her to have a seizure that would actually be life-threatening. Anyways that’s my story, I grew up walking into my school holding hands with Madison everyday, and I love her like. AGGRESSIVELY. She’s great. It was a hard time after surgery, but it was so worth it for her.