My Life Expectancy Has Changed [CC] / Squirmy and Grubs

Hey, YouTube. Many of you are probably wondering where Hannah is right now. I have some bad news. Unfortunately, Hannah is taking a walk right now. Yeah, did I get you? Probably not. Anyway, yeah, she's taking a walk, so I'm going to do this video on my own. This is just going to be a brief little life update. If you're new to our story, I'm Shane, my girlfriend is Hannah, and I live with a disease called spinal muscular atrophy that causes my muscles to waste away as I get older. About a year ago, the FDA approved the first ever treatment for my disease that actually stops the progression of the muscle wasting. It was an incredible moment. The treatment is called Spinraza, and tomorrow, Hannah and I are headed to the hospital for my sixth Spinraza injection. My head has been clouded with so many nervous thoughts as this date has drawn closer and closer, so I really can't wait to just get it over with and return to normal life. The injection isn't excessively painful, but it's also fairly unsettling to experience. With extreme delicacy, a radiologist will stick this long-ass needle into my neck right below my ear and thread it through all the precious nerves and veins to access my spinal cord. I'm completely awake for this whole process. It kind of feels like someone is pressing their thumb into the base of my skull. It's honestly quite surreal to experience once I dismiss the thought that the slightest of mistakes could seriously damage my aliveness. My fears about Spinraza are less, I think, about the actual procedure and more about what the injection means to my life. I've been feeling a lot weaker in the past few days. As my last dose that I got four months ago begins to wear off, I've been reminded in a very stark way that the natural projection of my disease without Spinraza is that I will get weaker and weaker for the rest of my life. A long time ago, I came to terms with that idea. I accepted it and decided that I was gonna live as hard as I could and love as hard as I could, no matter how weak my body got. And then Spinraza came along and completely turned my world upside down and changed this timeline for my life that I had come to terms with in my head. Since starting this treatment about a year ago, I am no longer getting weaker, so long as I receive these injections every four months for the rest of my life. That is incredible, but it's also terrifying. So much of my future stability, both mentally and physically, are now hinged upon my ability to continue receiving this very important drug. It's not a bad thing, it's just a big thing, and big things tend to take up a lot of brain space with their bigness. Hannah understands my current internal freakout better than I probably do, and she's been masterfully distracting me when I need to be distracted and just holding me extra tight and listening when the thoughts creep in and become unavoidable. It's been a really fun few days. We've done this process many times together, and she knows that right now I am just there on the inside. Tomorrow, she and I are gonna wake up and go to the hospital. I am going to have synthetic DNA injected into my spinal cord, and afterwards we're gonna be laughing about it over a delicious meal together. Life is weird and cool and full of excitement. Hey! Hi. Let's see who it is. The other half of Hermione Grubbs. Yeah. Which one is she, I wonder? I don't know. The world may never know. How was your walk? It was good. Nice out. How do you feel about Spinraza? I love it, it makes you feel stronger. I hate the injection days. Why? Why? Why do I hate when they stick a needle into your spinal cord? Yeah, you should be into that. For an hour when I'm in the waiting room? They don't let her come into the actual procedure room, so it's like a heart attack every time, right? Yep. With some stranger, stranger nurses, maybe not very well trained, I don't know. The hall. Moving you onto the table. I don't know them. They're well trained. Are they well trained to move an atrophied giraffe boy? I don't think so. I think Hannah dislikes injection day more than me. 100% I do, that is an actual fact and you know it. I'm gonna stick a needle in your neck. I don't feel any better after, like, just four months later I do it again. I don't get the- The rush of- The effects of the synthetic DNA coursing through my spine. I'm gonna eat pretzels non-stop until it's over. Eat your feelings. All right, see you after.