Suddenly it Matters


Kimi Sorensen's Story


Age: 25-36

A little bit about my journey:

My Diagnosis

hydrocephalus; chronic pain

Time to Get Diagnosed

I was diagnosed with hydrocephalus when I was 8 weeks old, but the chronic pain from the amount of surgeries took years to figure out.

Year I was Diagnosed


Sending Love to

Dr. Frim

Hospital I'd Recommend

University of Chicago

This is my story:

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.

Let’s play 20 questions:

The song that keeps me going is:
Recover by Natasha Bedingfield
I never leave home without my:
meds cases
My go-to feel better movie is: 
If I was in the hospital, the celebrity I would most love to visit me would be:
Lauren Graham/Melissa McCarthy
When I need to relax, I:
My favorite food is:
The quote that keeps me going is:
6. “You cannot control everything that happens to you; you can only control the way you respond to what happens. In your response is your power.”
When I need a laugh, I:
call my best friend
Meet my pets (or favorite stuffed animal):
don't have him/ her yet, come back in 6 weeks!
My hero is:
my neurosurgeon
When I’m having a down day I binge watch:
Gilmore Girls
My favorite book to get lost in is:
The Witness Wore Red
I want to be best friends with:
Italia Ricci
The thing I’m most proud of:
my college diploma
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I've discovered myself. And I'm happy with myself. Contentment is a very finicky thing and I'm thankful to have found it.
The most hilarious thing that has happened to me is:
I fell backwards on a bench once at a dance show,
It really means a lot when someone does this:
calls to ask how I'm feeling and doesn't believe me when I say I'm fine.
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
Don't compare yourself to who you used to be.
Words of encouragement that I’d give to my fellow warriors are
Rule #1 is nevergive up.
Follow my journey:

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