Jessie, 19

Young adult living with hydrocephalusSharing my story. As I type this, I keep hitting backspace. It’s not so much that I don’t know what to write, it’s that a small part of me does not want this on the internet. What if a future employer rejects me, not because of alcohol-involved photos, but for the fact that I have hydrocephalus? A simple google search would take you right here, and show you all of the struggles that I’ve had recently. It might be enough to outweigh – imminent humble brag warning-  awesome work ethic, intelligence, personality, all the things that make me a perfectly employable person. That is one fear of mine, but I’ve decided to share my story in the hopes that by talking, we can end the negative stigma around differently-abled people.

So anyway, here goes. I’m a twin and probably some of you reading can right now translate that to what I call “#premieproblems”. I was shunted after a grade 3 IVH and then shunted again a week later (first one blocked). I had a few other surgeries in my childhood, but went through life with hydrocephalus being a distant blip on my radar, save for an easy distal tubing revision when I was 11.

Fast forward to  Dec 31st, 2013. I was with my family in the Big Apple for the first time over winter break. Complete shunt failure that morning and was wheeled into surgery just after the clock struck midnight in Times Square. Not going to lie, not my best holiday ever. Two weeks later, back in the hospital for a proximal tube blocking but with a change of weather in sunny Phoenix.

That was almost two years ago. After the double whammy of surgery, my strabismus got worse, along with memory and processing speed. Thanks to cognitive therapy, vision rehab, abdominal scar tissue surgery, and time, I am now doing a lot better than I was before. I am incredibly grateful for a loving, awesome network of family and friends that continue to provide support over my whole life, but especially the last year and eight months.

I started college last fall and to help me succeed, signed up for accommodations through the disability resource center for the first time. There is a negative stigma around disability. Even though everyone in my personal life is very supportive, there’s still a small part of me that sometimes feels the negative connotations from society, so I do sometimes feel ashamed for using disability resources. It’s not a sticker that I love to plaster on my forehead. That whole language and conversation needs to change. I sometimes get cognitive fatigue or really horrible headaches and I’ve had to learn how to deal with those. Everything has improved, but there are definitely days when my normally sunny personality is overshadowed by a voice that yells, “This sucks!”

Gabby Giffords, who also has a VP shunt, visited my university last fall and someone from the audience asked, “How do you stay so positive?” She replied with, “Move ahead.” Or in other words, accept and adjust. Her circumstances are different, but she also had something unexpected happen to her brain later in life.  Holding on to anger at circumstances beyond anyone’s control is not conducive towards recovery. Her mentality has helped me stay positive. Having hydrocephalus and all the challenges that come along with it is something that I have had to adjust to, but now that I have, I am leading an overall amazing life.

What is my main message?  I am frustrated by the lack of communication between patients. I know a few people online, but there are over a million of us living with hydrocephalus. There shouldn’t be so many unknowns. I know everyone out there has had at least one moment where you want to know, “Does this happen to other people?” The Facebook Hydrocephalus Association page for Arizona is helpful, but there are fewer than 70 members, many of whom are parents (aka the real MVPs) of patients.  This is me reaching out to young adults that have hydrocephalus (as well as other lesser known medical conditions). I think all of us could benefit by sharing stories.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

 

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