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The Incredible Everyday Acts of Kindness I've Been Shown While Battling POTS

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It’s always the simple things. The smallest moments bring the greatest kindness to me. For the past nine years, I’ve been living with POTS (postural orthostatic tachycardia syndrome). Some years are better than others. Some months and some days are better than others. Evenings are always better than mornings. Right now, I hope I’m in the tail end of a really hard 16 months. My symptoms are many – brain fog, fatigue, dizziness, digestive problems, irregular sweating, irregular body temperature – and they are sudden. I feel fine until the moment I do not, with little to no advance warning. The list of what I can’t do feels endless and makes it easier to not go out. When I do go out, it’s easier to go by myself than to go with someone and make sure they clearly understand that we might not get to stay for the whole event, or even for a few minutes and that when I say “we should go” I mean now. And frankly, I don’t always want to be that vulnerable. It is no fun to admit limits. I don’t love telling people I can only walk a block so they’ll have to drop me off before we park. Or that I can maybe go to a restaurant, but I need to sit by a wall, and it needs to be fairly quiet and mostly empty and gluten free and even then I might not be able to eat there. I used to be the most low-maintenance person I knew. Now it seems as if I can function only in this very narrow window of ideal circumstances. While I’m getting better at asking for help, it is also exhausting to tell someone all the things I might need.

Which brings me to my moment of experiencing incredible kindness. This moment happens every week when I go to choir practice. It’s a small group, always under 10 people, and we meet in a small room that is often warm and sometimes hot. Attending at all activates three of the triggers for my condition: heat, being in a crowded space and singing. I go because even though singing can be a trigger, it can also be healing. If I can survive the first 15 minutes, when every voice in my head is screaming, “Get out! You don’t want to be here!!” then my system seems to settle and even starts to thrive.

Being in this small community of people and moving the singing vibration through my body helps me. So I do all I can to show up, every week, even when it’s hard. Since I usually arrive late, I often have to take the only seat available, next to the choir director. And while he is a loving, kind and charismatic person – just the kind of person most people would want to sit next to – when I sit next to him, it makes me nauseous. (Another one of my triggers is movement in my periphery, and as choir director, he’s always moving.) He is also my friend, so one day several months ago, I told him I feel worse when I sit next to him.

Recently I realized that no matter how late I show up, somehow my ideal seat, across the room from him, nearest the window, by the fan, is always available. What a coincidence, right? It took me a while to realize that he was orchestrating this, that he knew what I needed and made sure it was available to me. I didn’t realize how much time and energy I was spending strategizing about how to get to and stay at choir until I didn’t have to do it anymore. I can’t describe what this means to me. It means he had been listening to my experience. That he was thinking of how he could help. That he did it without it being a big deal. And I didn’t need to ask for it. The relief I felt and that I feel when I show up there is immeasurable. When I am there, I don’t have to figure this out by myself. Someone else has my back – and the rest of me too.

The other day one of my oldest friends invited me to dinner with his family. I explained that I probably couldn’t go because eating is still a struggle and I often feel sick after. He paused for a moment and then said, “Well, you can feel sick at my house too, you know.” On its surface, that might not sound like kindness – but it truly is. I went to his house that night, and as usual, I didn’t feel so great. But I did feel loved. He gave me permission to be a mess in his home, that I didn’t have to be having a good day, that they wanted me around however I was.

Most of the time, the people closest to me mostly understand that I might not (probably won’t) show up. As a result, they don’t mind when I cancel, or they don’t invite me in the first place. Far fewer people think through how I can show up and then do things to make it easier for me to stay. Those people are priceless. I would like to believe that those people could be all of us. Because we all want to be seen. We all want to be heard. And there are so many moments in every day when we can give that to each other.

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Thinkstock photo via bellerebelle_n.

Originally published: October 24, 2017
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