My Truth
A selfie of Jen, a young white female with long black hair and light green eyes, wearing a dark shirt. A blue sling is draped over her shoulder and has a large white bandage on the top of her head. She is in a hospital room with medical equipment blurred in the background.
CW/TW: Talk of Death, Near-Death
“I don’t know, I just feel like it’s too dark. It’s just too much, you know?”
I can’t even begin to tell you how many times, and in how many different ways, I’ve had this particular sentiment expressed to me. It occurs mostly on the basis of sharing (what I consider to be) the most important and intimate details of my life. And I do not believe it to be at all presumptuous to think that perhaps, I am not the only one. In fact, I think it’s highly probable that you are reading this because you have found yourself, either intentionally or not, being made to feel invalid. Whether it be from the mouth of a friend, family member, partner, coworker, or even a complete and total stranger. Feelings of vindication and validity are not sentiments that are easily given to those of us in the rare disease space. In a time of your life when finding the courage and vulnerability to speak your truth is met with ignorance and indifference, what are we to do?
Before my diagnosis, I was a very carefree person. The fun-loving kind, with a warm booming laugh; who was always up for adventures and wreaking all kinds of havoc with friends. Notorious for having a distinct inability to “shut-up”, I half expected the world to notice when I no longer had anything to say. Long animated stories, full of impersonations and jokes, disappeared. Detailed accounts of my day turned into a simple, “I’m good.” Smiles were half-hearted, plans were canceled, and that signature booming laughter was no longer heard. Eventually, people began asking what was “wrong with me”. I crumbled and told the truth since I couldn’t keep the pain to myself any longer. At first, I was flooded with kindness and compassion beyond my wildest dreams. But something happened that made these ardent displays of empathy slowly fade over time; I never “got better”. Suddenly, it was like being sick was somehow my fault. I would talk about needing “yet another brain procedure”, and people would roll their eyes. Some even thought I was exaggerating things or making it all up. Meanwhile, I was laying in a hospital bed in Maryland, my brain slowly hemorrhaging from surgical complications, crying, and afraid to rest my eyes for even a second; for the overwhelming fear that if I were to fall asleep, I may never wake up again. My mother would sit at my bedside and hold my hand; she’d promised me that she would watch my vitals so that maybe I’d feel safe enough to get some much-needed rest. I kept my hair long just to hide my sutures away, only to realize that people only judged me more for it. I was going through hell. It even got to the point where I had a fatal complication, in what was supposed to be a very simple procedure, and was pronounced clinically dead. I never expressed that publicly, until now. On the rare occurrence I even attempted to tell people the truth, they would turn to me and say:
“Well, you can’t possibly be sick forever! You just need to be more positive. If you just thought more positively, things would be much better for you.”
I was a broken human being. They told me it was tough love, and they wouldn’t tell me this unless they thought I NEEDED to hear it. But they were wrong. What I needed was unconditional love, validation, and to hear that even though there was no finish line in sight… that I would be okay. I hid and kept my darkness locked up inside, which caused me to have evermore trouble coping with my PTSD and its triggers. When confronted with social situations, I went out of my way to ensure I wouldn’t make anyone “uncomfortable”. But it reached a point where everyone would talk about their life and accomplishments, and I would just crumble into nothing. I would excuse myself from the table and find a place to hide my tears because I wouldn’t dare let the world see me cry. The sad thing is that I was going so far out of my way to accommodate others, that I was putting my own mental and physical health in jeopardy. This was when I began to realize something.
The only person who has any say in the validity of my life experiences is me. People may be “uncomfortable” hearing about what I’m going through, but I guarantee they’d be far more “uncomfortable” actually living it. I also realized that as an individual suffering from a rare condition, I have a unique opportunity to change the narrative and stigma surrounding this community. But the only way to do that is to stand with courage in your convictions and speak your truth. If people, in turn, choose to judge you… guess what? They are not “your” people. “Your” people will stand by your side, and embrace you for who you truly are. In darkness, and in light. Nothing more, nothing less. Truthful words may not be pretty, but pretty words are often devoid of truth. Yes, my story is dark. How could it not be? But It’s also a story about strength and resilience in the face of adversity. It is an impassioned account of my ability not only to withstand the storm... but to become the storm. And you know what? I’m damn proud of that. After all, without the darkness… how would I ever be able to see the stars?
Jen is a 26-year-old advocate from New Jersey, who has been ”living rare” for five years now. She was forced to end her career as an EMT due to the sudden debilitating onset of a rare neurological condition known as Idiopathic Intracranial Hypertension. She has undergone 10 major brain procedures and has made it her life’s work to find the root cause of her condition in an attempt to seek remission and aid in groundbreaking medical research. Jen spends much of her free time advocating with the NORD NJ Rare Action Network, writing, learning Mandarin, and also performing as a professional vocalist. Once the frontman of a Led Zeppelin/Heart tribute band, she is currently making her way back into the music scene with a collaborative feature on the way! So stay tuned, because you won’t want to miss what this woman-of-many-talents does next!