Record Your Journey

I record everything. Since the day I was diagnosed with neuromyelitis optica (NMO), I have always felt the need to record and take pictures of my journey. From the symptoms that led to the diagnosis, to hospitalizations, and even a recording of the doctors telling me that I have NMO. I have it all, my whole story is right here at my fingertips.

A lot of the time, I forget the events that occurred until I go back and look at these videos and pictures. They help me realize that there’s so much to my story that I don’t even talk about. Recording myself at the lowest of lows has never been an easy thing, but it’s been something that’s helped me immensely.

Capturing the NMO experience

Everybody's story is unique, and sometimes the stories that we are given are just so unfathomable that taking videos is the only way to truly capture the experience of having a rare disorder like NMO. From the appointments telling me that I’m doing better, to the appointments telling me that certain things are getting worse - it’s super cringe.

Sometimes I think about all of the videos, all of the times I cried by myself on video. But no story is perfect. And I want to show people that even at my lowest of lows I’m willing to share my story to show others that it’s possible.

I was flipping through some old videos the other day and came across one of myself, right after I was diagnosed. I was making a video of all the feelings that I was feeling. Feelings that I didn’t even remember I had until watching. Like the fact that I was so hellbent on the idea that I would ever have a normal life again. That my youth was robbed and ripped from me. But for some reason, I knew that this was happening for a reason, even at my lowest point.

Record my journey

These pictures and videos give me the courage to tell my story. Why are you may ask? I don’t have to feel the need to be validated about what I’m saying. Because a lot of the time having a rare disorder and the things that we go through sometimes people don’t believe. With these pictures and videos that I’ve acquired the past couple of years, I can confidently show the evidence or the receipts of what it is that I was experiencing.

One day I hope to turn these pictures and videos into something. So that the next generation of NMO patient has something to look towards when they are going through the lowest of lows and the highest of highs with their diagnosis.

I highly encourage those with a rare disorder, or a unique story, to record themselves through pictures and videos. At the time it may seem weird, unnecessary or unimportant - but years later I’m so grateful that I have every point of my story to look at. Especially with having brain fog, it sometimes is hard to recall certain details of my story.

We all have unique stories and the world needs to hear about them.

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