“It was the fall of 2007. I was in 7th grade and getting my regular back-to-school eye exam. This time the doctor kept me waiting for a pretty long time. I had already read every magazine in the room and was getting antsy and wondering what was for dinner. I’ll never forget the look on his face when he came in and said, ‘You’ll need to see a neurologist.’ All I could think was, ‘Isn’t that what Dr. McDreamy does?’ I immediately thought of some storylines from Grey’s Anatomy involving his specialty and panicked. My mom was asking a million questions such as, why? Is this normal? He explained he saw something on my optic nerve and it would need to be examined further. He then asked if I frequently got migraines. I was only 12, but got migraines a lot actually. It was to the point where people thought I was a hypochondriac. They would say, ‘She’s just a kid, why does she have migraines?’ My mom always thought it was puberty. Now, hearing the doctor ask about them, it worried us. We left the office anxious for answers yet anxious for the possible answers.
Soon after we went to the neurologist and had several MRIs, CT scans, and spinal taps. Getting all of this testing done required me missing a lot of school. Middle school is a tough time to begin with but I was struggling with finding my place. I had to stop dancing (something I loved) and quit cheerleading. My friends did not understand what I was going through because I didn’t ‘look sick.’ I was branded as the ‘sick girl’ and felt isolated. I lost lots of friends but the few by my side got me through along with the school play. I focused on learning my lines and my character for the upcoming production of ‘You’re a good man Charlie Brown.’ I got lost in the world of my character Peppermint Patty and I escaped my own reality for a bit. I vividly remembering making my mom watch High School Musical with me after every spinal tap when I was quoted to my flat for hours so I did not get a spinal tap headache. The results of all of the testing came back and I was diagnosed with a rare brain disorder– Intracranial Hypertension.
After a lot of questions we learned what IH was. I had a buildup of fluid that acted like a tumor on my optic nerve. But since it was actually not a tumor it couldn’t be removed. This caused the migraines and blurred vision and could ultimately end in vision loss of untreated. Being a rare disorder it was very hard to find support. Additionally family and friends did not empathize with me. I thought getting a diagnosis would clear up the ‘hypochondriac talk’ but it quite possibly made it worse. Now going forward, I feel for those going through rare illnesses. It’s hard, you feel alone, misunderstood, and helpless. You will find your tribe.
The treatment plan was either medication or surgery. Since it was the middle of the school year and I missed a lot of school already we decided to try the medicine. For anyone who doesn’t know, Diamox is the devil. This medication causes tingling in your feet and toes and is ROUGH on your stomach. I was frequently in the nurse’s office. After months of living like this and playing around with the doses we decided this was no way to live and went for the surgery.
Since March of 2008, I have had four brain surgeries. One lumbar shunt, one revision, one removal and one right transverse sinus stent. It’s true, each surgery got easier. Even though it got easier I never knew what to expect, as is usual with IH. I remember after getting the first shunt I asked, ‘How will I know if it fails?’ And the doctor said, ‘Oh, you’ll know.’ Well, a year later while working as a camp counselor, I lost my vision and got separated with one camper. I played it cool and finished the day. After that, I got my revision. That day completely terrified me and they didn’t know if I would get my vision back. So I had a revision and looked into alternatives and found Johns Hopkins was doing stenting but you needed to qualify. So I started making trips from NY (where I’m from) to Baltimore. We took a risk and removed the shunt and I lived on diamox until I got my stent. This was in 2016. I have never been happier than I am with my stent! I’m proud I took a risk and I live with less anxiety. I will always have anxiety living with a chronic illness, but now I can ease some of that. Also, this lead me to my passion-acting. That play powered me through the toughest time and helped me realize my love for the arts. I love telling the stories of others and empathizing with characters. Additionally, I teach drama to ensure that students learn to be empathetic.
Living with a rare chronic illness teaches you so much not only about the medical field, but about those around you and yourself. You learn who your true friends are, who is empathetic and of course how strong you can be. The days you feel completely isolated and unsure of the future, you are reminded someone is worse off, or you are supported by a friend. Now with social media and communities such as this we can easily support each other. We got this!”
Read more stories like this:
‘If we waited 2 more weeks, you would’ve been paralyzed from the neck down.’ I was in and out of consciousness. Death wasn’t the only thing on my mind.’: 15-year-old undergoes brain surgery after feeling dizzy, discovers rare chronic brain condition, Type 1 Chiari Malformation
‘I was in front of my mirror at age 13. ‘This is not your fault. I love you so much and I am still your daughter. I am sorry.’ I didn’t want my parents to blame themselves for how messed up I was inside.’
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