Margie

I was diagnosed with hydrocephalus when I was 8 months old. At the time, my family was living in Ohio. The first signs of concern my parents noticed were an enlarged head and vomiting. Also, according to my mom, I would scream bloody murder when lying on my back, likely due to the increasing pressure inside the ventricles of my brain. Shortly after we moved to Minnesota, I had my first ventriculoperitoneal (VP) shunt placed when I was 12 months old.  

Doctors had told my parents I was never going to walk or talk, but my parents didn’t believe that, though they did notice I didn’t crawl before starting to walk, like some other babies. They decided early intervention would be a good option for me. I was enrolled in physical therapy (PT), occupational therapy (OT), and speech therapy as a child.  School was tough at first, as far as making friends and helping them understand my disability. Eventually, I got comfortable sharing about my hydrocephalus with friends. I would talk to them about the condition, sharing that I have a shunt and may need to miss time from school if my shunt stops working or I am not feeling well due to my hydrocephalus.  

Every time I experience vomiting and double vision, my parents are concerned that my shunt is not working properly. This often leads to appointments with my neurosurgeon and tests to check my shunt, and sometimes surgery to fix the shunt. I have had three shunt revisions and two stents placed in my brain. 

I’m now 32 years old. I have a podcast titled More Than Able where I share my story as well as the stories of other people with disabilities. I was inspired to start the More Than Able podcast because I noticed there weren’t any podcasts talking about disability, and I wanted to change that. It has meant so much to me to have a platform to share not only my story, but the stories of others who have chronic conditions. I have a wonderful boyfriend of two years, Parker, who loves me and supports me just like my family. I have wonderful friends who love and support me, and I’m so grateful. 

I have not let the fact that I have hydrocephalus stop me from living my life to the fullest. I climbed Mt Chrysolite in Buena Vista, Colorado, a few years back, and as stated above, started my own podcast and am dating a wonderful guy. My perspective has changed in the way that I know I may not be able to do a lot of things or do them right, but I can still do my best. My advice to others who are navigating similar experiences would be, don’t give up. 

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