#1 ·
I’m one of the few who actually survived—or rather, lived through—this thing during my first quarter of life...
After years of passing on it (even though I was curious before, I just kept stalling or putting off any deep dive), I’ve decided to try and help others. Specifically, I want to help parents who are just stepping into what I’ve been dealing with since day one. I still live with this every single day; it isn't going anywhere. It’s my curse (pardon the blunt wording), but it’s also my "other self." It makes me look at life’s possibilities with a more cautious, different, and detailed lens—noticing things people often overlook because they haven't had those options stripped away from them yet.
By "possibilities," I mean very basic things: walking, participating in light sports to maintain physical and mental health, or even something like sewing for women, which (in my experience) can be a struggle. Even basic communication can be difficult due to subtle but noticeable speech impediments... and the list goes on.
Here’s the interesting part: a person or child in this situation is often capable of functioning at about 75% capacity. To an untrained observer, they might seem 100% "normal" because the observer simply doesn't notice—especially if the individual has learned how to masterfully control, or rather mask, their condition. But the issue is that (at least for me, and I suspect for others too) that level of self-control isn't always sustainable. The condition—and I think this is the first time in my life I’ve truly accepted it as an actual illness rather than just a state of being—is ultimately stronger than you are.
So, that’s a brief intro. Next, I’ll lay out a timeline of the initial events, starting with the various diagnoses tied to what I consider the core issues: motor retardation and Tetraparesis pp. I plan to include key excerpts from my medical records at the beginning of my posts so people can easily find this information. My goal is to kickstart this project with good intentions, and hopefully, by the end of it, I’ll find someone who can help me—not necessarily to eliminate the condition, but at least to improve my quality of life. 🙏🙏🙏
After years of passing on it (even though I was curious before, I just kept stalling or putting off any deep dive), I’ve decided to try and help others. Specifically, I want to help parents who are just stepping into what I’ve been dealing with since day one. I still live with this every single day; it isn't going anywhere. It’s my curse (pardon the blunt wording), but it’s also my "other self." It makes me look at life’s possibilities with a more cautious, different, and detailed lens—noticing things people often overlook because they haven't had those options stripped away from them yet.
By "possibilities," I mean very basic things: walking, participating in light sports to maintain physical and mental health, or even something like sewing for women, which (in my experience) can be a struggle. Even basic communication can be difficult due to subtle but noticeable speech impediments... and the list goes on.
Here’s the interesting part: a person or child in this situation is often capable of functioning at about 75% capacity. To an untrained observer, they might seem 100% "normal" because the observer simply doesn't notice—especially if the individual has learned how to masterfully control, or rather mask, their condition. But the issue is that (at least for me, and I suspect for others too) that level of self-control isn't always sustainable. The condition—and I think this is the first time in my life I’ve truly accepted it as an actual illness rather than just a state of being—is ultimately stronger than you are.
So, that’s a brief intro. Next, I’ll lay out a timeline of the initial events, starting with the various diagnoses tied to what I consider the core issues: motor retardation and Tetraparesis pp. I plan to include key excerpts from my medical records at the beginning of my posts so people can easily find this information. My goal is to kickstart this project with good intentions, and hopefully, by the end of it, I’ll find someone who can help me—not necessarily to eliminate the condition, but at least to improve my quality of life. 🙏🙏🙏