Well, it’s been an exhausting week and it’s only Tuesday. That’s fucking rough, I think. I had an appointment with my new neurologist yesterday. It was a good appointment, as far as things could have been. I mean, he did have to Google my condition – but at least he did that, instead of just pretending my condition doesn’t cause actual physiological issues. He ordered the appropriate tests, new brain and neck MRIs as well as a CINE MRI, so I can follow-up with neurosurgery in the coming months.
And as good as it was, I am still scared as fuck for the future. I applied and was accepted to my new university (hopefully the last, before I graduate). I just really want my degree, I really want a future where I can work with people who struggle in the same way I do. But I’m so afraid I’m never going to make it, that I won’t survive the ride or that I will become disabled completely before that day comes. It will be such a big deal for me to graduate. For one, I will be the first in my immediate family to obtain a complete higher education. It’s not that my family hasn’t made something for themselves. My mom managed to get a high position in a civilian job for the federal government, without a degree, which is such an amazing feat. She got there with raw talent, dedication, determination and skill. That is amazing. However, that doesn’t change what I want – which is a specialized education with an opportunity to work in clinical research. I can’t get there without a degree. I love the brain and I am excited about uncovering knowledge. I want to be a person who shapes a field, or a perspective on the brain. I don’t need to make some flashy discovery or break ground in science. I want to help bring some aspect of knowledge to life, for someone, anyone.
I am so afraid once I have this brain surgery, I won’t be the same. I won’t be as able, mentally or physically. I am already struggling to keep up with my age group because of my medical conditions. And I envy everyone around me, who has already graduated and is working on their graduate work. All the people from high school who have already done so much more. I know I have done a lot, given my circumstances. Many people tell me I am an inspiration, but I don’t feel that way at all. Maybe people just have very low standards for what inspirational means, or they think they have some concrete understanding of who I am, what I’ve done and where I’ve been.
Getting my degree isn’t just about being able to work in my dream career. It’s actually so much more than that. You see, my husband has selflessly sacrificed years of his life working in a career he isn’t exactly fond of – for me. So, I could the medical insurance I need. I mean, obviously, that wasn’t entirely his motivation for joining the military. But it definitely played a large part in it. And now, he is finally starting to hone in on what he wants to do for a career and life. I so desperately want to return the favor, I want to be able to support him so he can pursue his desires. He wants to get a degree in mechanical and electrical engineering. I want him to have a career he loves, not one he resents sometimes. And what if I can’t? What if I cannot measure up and give him the gift he has given me?
It has taken me so incredibly long, years, to actualize that I am this capable and intelligent woman who has so much to offer the world. I have a unique platform in life, with an ability to empathize and feel so deeply for those who struggle. And facing my genetic condition and my brain condition, I feel like I will never get the chance to give everything I have to offer the world. I feel like I will never reach the point where I can do what I was always meant to do. It is crushing my soul and I feel like I cannot breathe. In this moment, it feels like I will not make it. I know deep down that isn’t true and tomorrow I am sure I will feel like I can do it all again. I won’t feel weak and momentarily be frozen in fear. I know tomorrow, I will continue to give the world what I can, until I can’t anymore. But for now, in this moment, I’m scared.