I’ve always known I’ve had hydrocephalus. It’s sort of like that big brother’s in the room but you never talk about it. It’s just there. Never in my life did I imagine that in my teens it would cement itself on center stage & not only demand to be recognized but refuse to go by the wayside until it has taken over every aspect of my life. When I was 16 I had a headache. Sounds like every other sixteen year old’s story when they go to a demanding college prep high school with 7 classes on their schedule. So I just tried to ignore it. Until it became so bad that I had to go to my neurosurgeon. After 3 different appointments he decided to do a spinal tap to see what my pressures were. I was afraid, but I sort of didn’t really know what any of this meant at this point. but I needed surgery to replace my shunt. Then that shunt got infected, & infected all of my spinal fluid, & that started the never ending cycle that I go through to this day 17 years later. After that infection I went through a lot of ups & downs with my health, but mostly downs; about 35 brain/spinal surgeries & even a stroke that savagely took my ability to walk & talk.
When I came back to school when I was a junior after being gone most of the previous year, I felt like an alien that just landed on earth. I thought that if I opened my mouth to say something everyone would know what I tried desperately hard to hide. That I was “different” than they remember, & then I would have to tell them why. I lost a lot of friends, because they didn’t understand, how I could be one way the last time they saw me & now I could be totally different without them knowing what happened on the in between.
Being this sick can be extremely isolating. This is where I sort of got my Corona survival guide. I had become accustomed to think that not spending time with people was normal. Not going out on the weekends was just the way it was. Going out to dinner was a luxury used only when you’re feeling 150% & that rarely happened at this point in my life. I would look outside my bedroom window or let’s face it more times than not it was my hospital window down at a world. A world that I didn’t even recognize anymore. Was I even a part of this world anymore? The hospital & feeling horrible had become my world. I had been forced into a club. A club that I had been quietly observing for the past 6 months. A club that I hated. A club that i fought with every bit of residual strength to NOT enter. I didn’t want the metaphorical stamp of “Spoonie” that I thought it would tattoo on myself without my permission, which I had no intention of giving them. To be honest, I thought all of the stereotypical thoughts about chronic illness that I know now are not true.
Now I’m a 31 year old woman still trying to navigate the world of chronic illness. It’s been hard, but you don’t see me trying to break out of that club anymore. I can’t wait to see what tomorrow brings.