My personal neon sign: A health update

A neon sign stands out on a vacant street. A small girl with a big voice stands out on stage. A 26-year old girl using a walker, a cane, or a wheelchair* stands out . . . everywhere. 

I was never one for the spotlight. I never wanted people looking at me. I like taking photos because I’m still there; I still have a role but I’m not the one people are looking at. Even in writing, I don’t write so people know who I am. I write because it helps me process, it allows me to feel and understand what I’m feeling, and because I love it. 

So the fact that I am walking this next chapter of my life with a personal neon sign is not how I wanted to spend the summer of a lifetime. 

Why am I using these things you ask? Good question, I want to know too. 

Here’s what we do know:

There’s a lesion in my right frontal lobe that lights up in a CT without contrast and adding the contrast did not show anything new. This means it shouldn’t be causing my symptoms, yet this location controls my motor functions, which has been the thing in my body most affected. It’s the reason for the cane, walker and wheelchair. Going forward, my neurologist has decided to monitor my symptoms and strength through the summer since I’m in Washington D.C.

My heart rate has also been having problems. Some days it’s as high as 160 beats per minute when resting, but I’m on medication now and it’s been mostly better. However one day last week it was 140 while in a wheelchair. We also know there is nothing wrong with my heart muscle or valves, rather there’s an underlying trigger causing the racing heartbeat that we need to identify. 

We have no idea if the heart and brain thing are related. We do know that the heart rate is what led to my hospitalization last October when I also had severe sepsis. It’s been eight months since that hospitalization and I’m still very weak, especially in my arms and legs.

I do want to point out that the good things in my life definitely outweigh the bad. I have a GREAT internship and everyone I’ve been working with tells me that I’ve been doing a great job. I get to be in WASHINGTON D.C.! I love this place for historic reasons, career aspirations, and it’s a dream come true. I have also been blessed with an amazing support system with my family and friends.

Throughout my college career, I have battled health issues. Nothing was life threatening, except for the sepsis. But through the struggles of the last four years, I have persevered and even graduated with honors last month. Yet none of this has been easy and I now know what it’s like to go through life with a “disability.” It has taught me not to take things for granted. It has shown me how much harder life is for those who are less lucky than I am and shown me that life can still be good regardless of physical limitations. Many things are harder for me to do now, even climbing up the stairs. But I can still do it. As a girl who never wanted the attention, it sure has me living outside of my comfort zone. 

I also understand that my issues are nowhere near as bad as what others have had, but it has taught me compassion and to value the strength in those who have it even worse.

*For clarification, I use the cane when I’m just going to work, the walker is for the days I feel weaker or I’m going to be outside without access to a wheelchair. The wheelchair is for the days I’m at museums or gardens for the whole day.