Where do I even begin? Well, the good news is that most of you know the story already. So, anyone new reading this, sorry but you're going to get the abridged version. So, I had the surgery 4/6/2006. and you would think that after a couple days lying flat, I would be all good to go home. But unfortunately, that's not how it worked out. About 15 hours after they put the new shunt in my spine, the one in my spinal canal, that they just freshly put in. Toast. The one in my skull? See ya later, both of them had malfunctioned. Sending me into a major pain crisis. Vents huge, projectile vomiting, screaming, you know how it goes. Dr. C comes in and says, this is it. This is what I've been waiting for. Remember when I told you if her vents become huge accidentally, I wanted to try the third ventriculostomy? Well, this is my chance. He even tilted the head of my bed backwards, so my ventricles would get even bigger faster. He said, she's not going to have a life unless we do something now. Meaning unless he decided the 3VC and only the 3VC, I wasn't going to make it in his eyes. So, what was my mom supposed to do? He gave her an ultimatum. Except the consequence was going to be far greater, if she didn't say yes. And the last thing he said was this is probably going to be a 10-hour surgery, so get comfortable (which idk why he said that I've looked it up it takes 1-2 hours max). When he was telling my mom this, it was around midnight. So, when she saw him coming through those doors at 6am, she knew something was wrong. He proceeded to tell my mom, that I had a hemorrhagic stroke during the surgery, and they were unable to finish. He said we were able to make the bypass in the 3rd ventricle, but they weren't able to make it was big as they wanted, so I did still need a shunt, which if anyone is unfamiliar with third vetriculostomies, they are a treatment that will hopefully be able to let you avoid the shunt. Which most doctors want to do these days, if you are a candidate, because shunts obviously have their own problems. Then he said, I'm not sure if she can speak or not, when she was waking up, I tried talking to her, but she didn't answer me. Her speech is most likely affected, her right side is affected, fine motor skills will be greatly affected, but she has her age on her side, she's so young, she will be able to gain everything back in a year tops (spoiler alert, didn't happen)
I have been imagining this day since the stroke first happened. And I can't believe the day is actually here. That sounds weird, if you just read it with an upbeat connotation like I do, so let me explain. In years past, I would think to myself, am I ever going to get to a day, where I don't notice that my fingers don't really work anymore? Will I ever wake up and not notice that my hand is in a tight fist? And to be honest, I still think that from time to time. April, and the days and weeks after it have literally silenced me. Thinking back over the past 17 years, it has not gone as planned. And anyone who knows me knows that I can't do anything without a plan. But in reality, does anything go as planned? My life was forever changed on April 7, 2006. And I don't want that to be automatically construed as a negative statement, but I also don't want it to be automatically interpreted as a positive statement. It's more of an in-the-middle statement. Not exactly knowing which way to lean. Knowing I can't truthfully lean completely in one direction or the other. So, in a way that's good right? But the question remains. Do I feel as though my body is still foreign to me? Or have I gotten used to it? Something I promised myself would NEVER happen. I remember who I was, and I miss her. If I think hard enough, I can be back there, but then when I just try to grasp that feeling, right when it becomes tangible, it's like it's blown just out of my reach. Every time. But I will say, I LOVE the adult that being sick has turned me into. It's a strange paradox. It's like you're straddling a line with fire on one side, and terrifying angry tigers on the other.
If I were only able to think of one word to describe this time in my life, I think it would be continue. Because that is literally the only thing, I could do by myself. I couldn't walk unaided, I couldn't speak. It was as though I was locked in a prison. I could absorb everything, but I couldn't verbally react unless you count crying. I was the only person who could make the decision to continue. I never really considered myself to be a extremely independent person, but in this recovery process, I had to be. No one could make me better but myself. I was the only person who could decide to do the therapy, I was the only person who could decide to decide to speak; to take another lap around comer CICU, with the walker.
So, 17 years later. Where am I? Keep reading and you will find out! I always say when it comes to my being sick, if I had to do it again, just to keep everything I've learned and the outlook I gained, the wonderful friends I've made etc. that I would without a doubt. But I've recently had a revelation: you know how it's going to end (and not to mention that could never happen🙄). If you were to do it again, you know everything that's going to happen. I know every horrible step, but I also know that every horrible thing that happens is going to have a happy ending. So, I think I will change my answer for the first time in 17 years, just a little. Yes, I would go through it all again. BUT if and only if I were able to see what my life would eventually look like. I just finished a post baccalaureate program at my alma mater, Dominican University. I brought my GPA up literally a point and a half. I'm applying for jobs at University of Chicago. Once a patient, then a volunteer/intern, maybe an employee in the future. So happy that 17 years ago I made the decision to continue, and as my dad says Never Give Up. Next 17 years, I hope you're a little kinder to me, but whatever you have in store, I'm ready for ya.
.
