They say you have nothing unless you have your health. For the past month I have been living a nightmare. For a brief moment, I thought my health and future were gone. In late September, I had a routine eye appointment with my Ophthalmologist that had gone awry. Initially there was nothing of concern as I just needed a new prescription for my reading glasses. Everything was normal: dilated eyes and checking which glass helped me see clearer. It wasn’t until the assistant needed to check the health of my eye that everything changed. As I sat there with my face in a machine, making jokes with the assistant, she suddenly looked worried and asked me to wait as she left to grab a colleague. I heard them speaking outside, “….she has papilledema, but I’m not sure…” I was scared. There was something wrong with my eyes and no one was letting me in on the secret.
After multiple eye scans and a very gut wrenching talk with the Ophthalmologist, I was dumbfounded. From coming in for a normal eye exam, I was just told I either had Idiopathic Intracranial Hypertension or a tumor. I felt like I was going to throw up. I was familiar with tumors, but what was Idiopathic Intracranial Hypertension? Idiopathic Intracranial Hypertension, I was told, was a rare condition where pressure inside the skull increases for no obvious reason. It could lead to blindness if it is not caught early. My head was spinning and I was crying my eyes out. Either way, it didn’t sound good. Did I have a tumor or a rare brain condition? Did I catch it early or was I too late? Everything was a blur. I was quickly scheduled with follow-up appointments and told to get an MRI as soon as possible so they could determine if I had a tumor or not. The Ophthalmologist gave me his card and told me to call him if I had questions. I had a million.
I felt so alone. I felt that I could not call my mother as she had just left my emotionally abusive/manipulative stepfather the weekend before. I could not call my siblings because I did not have the heart to tell them that my life was possibly in danger; we already lost one sibling to disease and they could not bear to lose another. I sat on the steps of Hearst Hall at UC Berkeley and just existed. I do not know how to describe that moment in my life. There’s a point you reach where you’re just numb. I am so used to handling my own business, but this was something I did not want to do alone. There was only one thing to do: I called my friends.
Womxn, I cannot emphasize the importance of female/enby relationships enough. I felt and continue to feel endless support and love. First, I called my old roommates, Mirella and Rocio. These two young womxn are such a force of positivity and light in my life that it was automatic to call them first. They have been through my previous suicidal ideation and the death of my brother, why not be there for a possible life changing illness? I texted my friend Anna, in New York, and the first thing she asked is how can she be there for me. I notified my roommates, Caeli and Michelle, who automatically made a safe space for me at home to talk and process my possible diagnosis. I called my friends Christine and Devin, who accompanied my appointments. There are so many folx in my life that stepped up for support, that if I wrote every single person you would stop reading. Up to this point, I have already had a rough year. My long-term partner and I broke up in the beginning of the year, I was laid off from my job due to Covid-19, I was diagnosed with Bipolar II, my mother was going through her own drama, and then I received this life-changing diagnosis. Y’all, I am tired. Luckily, I have friends who would make meals for me, videochat me so I was not alone, and those who continue to take the time to go to doctor appointments with me. I am the luckiest womxn alive.
The 2.5 weeks following that eye exam were the longest of my life. Between waiting for insurance to approve my MRI and finding a center that accepts my insurance in the first place, I was lost in the bureaucracy of our nation’s healthcare. I could only describe those days as a blackhole. Life was moving around me and no matter how hard I tried to reach out and grasp a semblance of my old life, it was impossible. I finally had my MRI appointment a few days ago, I finally learned what was wrong. After close to a month I was told that I did not have a tumor, I had Idiopathic Intracranial Hypertension (I.I.H.); the rare condition. Although I relieved, my happiness was short lived. Being diagnosed with depression at 12 and bipolar II at 24, I was not surprised as I was familiar with those illnesses and symptoms. However, being diagnosed with I.I.H. really shook me to my core. What did this mean?