To the Students Who Said I Was 'So Slow' After the Fire Alarm Went Off


We have a system for this. My brother lives across the hall and all of the roommates in our two apartments know the drill. If that siren goes off, he comes to get me. That infernal fire alarm. But I can’t make him be by my side every moment of every day, nor would I want to. He has his life, I have mine, and they intertwine all the time, but especially moments of distress.

I am in my second year at my university and I still have not gotten a diagnosis for my mystery illness. Whatever it is, it is very limiting. No stairs, nine dietary restrictions, and pain. Constantly. I live on the fifth floor of our residence hall with my brother right across the hall, so when the stairs are required, he will help me. But he isn’t always there.

Twice in the past two weeks there have been fire alarms while my brother was not here. I was not alone, luckily, but there is no one else who can support my weight as he can. Here is the process.

The alarm goes off and scares me, then it starts aggravating the migraine that I already have after a full day of classes, I scramble for my ID, phone, shoes, and warm coat to insulate my body from more pain to be brought on from the cold. I then meet my brother’s girlfriend Sabrina (on the right in the photo above) outside of my door and we start the pain-filled journey down five flights of stairs to first floor exit. I put as much of my weight as possible on the hand rail, some in Sabrina’s hand, and the rest on my already screaming legs. Once I get to the bottom, I am relieved. But I still must walk through the lobby of my building.

I am often the last person out of the building because the whole process takes about six minutes. But I am out. I am proud of myself. Until, I walk through the lobby.

Each time I have passed through the lobby, last person out, the students sitting at the guard desk have commented.

One simply said, quite belittling, “You all need to hurry up.” It took one look at my position, one arm wrapped around Sabrina, and a face of distress for her to realize what she had said, and to whom she had just said it. But there was no apology. The next time, the two girls commented, “Man, they are so slow. Ya know, if ya’ll burn to a crisp because you didn’t want to leave your apartment, that’s on you.”

It makes me sad to hear these things, but perhaps not the way one may expect. They do not hurt my feelings, they alert me to their ignorance of illness. I know that had they heard my story, they would have never said those things. They perhaps would have offered help instead. If they heard my story afterward, they would never make comments like that again to someone else who is experiencing similar difficulties.

This is me, peering down from a giant slide in Cochabamba, Bolivia.
This is me, peering down from a giant slide in Cochabamba, Bolivia.

I have reached a place where people can make comments toward me and I will let them roll away, or they will inspire me even further to spread the word of invisible pain. But what about those other spoonies out there? Those people who are still trying to learn how to cope with their pain (though honestly, that part never really goes away), they may have been really upset at those comments. I am glad to be at the point where I forgive, but I will not forget it, because there could have been another spoonie struggling to get down those stairs, someone who still needs help to see that their illness while it challenges them, does not make them lesser than others.

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