I had the honor of seeing the Art Garfunkel live in concert this week. It was absolutely amazing to see this legend in person. He shared his poetry, which was as beautiful as his songs, voice, and soul. One quote in particular stood out to me that night. He said,
"You need to be brave to mend out in public."
This statement resonated with me so deeply. As people with autoimmune conditions this is exactly what we do every day. We have to try to adapt and constantly mend ourselves in public. We have to learn to be openly vulnerable whether we like it or not. And this statement in particular hit me hard because I was the only one in the crowd wearing an antibacterial mask. I definitely stood out from the crowd and there I was mending myself in public right along with the Art Garfunkel.
It's a very vulnerable state to wear a mask to a public event. I never realized how vulnerable it would make me feel. The fact of the matter is that my immune system is so weak that I can't take the risk of attending such a large public event without some form of protection and even then it's not a guarantee. And my health is in such a state that I cannot risk adding any more pressure to my body. So every time I go to a public event I don a mask. The thing about a mask is that people can't see your facial expressions. Sharing a smile with someone remains unnoticeable to them and any kind of facial expressions to indicate that you don't have something contagious are out of the question. I never realized how much I would miss using facial impressions amongst strangers. So without the universal ability to communicate you are left feeling powerless and vulnerable. Thus, there are some basic responses that you will receive.
1) What does she have and why is she sharing it with us?!?! Yes, this seems to be the most common. Mad that you would expose them to anything contagious. And without that commonplace and effortless smile you cannot reassure them. So you get the evil eye or very long stares as if that's your cue to leave.
2) Absolutely no eye contact. I don't know if this is a self defensive mechanism for discomfort or if this somehow reassures people they won't catch your contagious disease. Either way you feel like a pariah. As if having a large blue mask on your face wasn't unpleasant enough. I mean do you try to match your outfit to your mask or does it just make it worse.
3) The employees that have to make some form of eye contact, but it's never very long and you can tell they wish you weren't there. They are the unfortunates that must have contact with you.
4) A very, very rare few and I mean few people that seem to be a little uncomfortable, but are willing to not treat you so differently. This reassures you that you shouldn't go running for the door and rip off your mask out in the comforting and fresh outdoor air.
I've always marched to the beat of a different drum as they say and not been consumed about what other people think about me. I'd say it's probably a healthy amount. But there's something about wearing that mask that makes one so vulnerable. It's as if to say "yes, I'm different and there's something wrong with me, but here I am." And the mask speaks for you because no one is going to openly talk to you.
However, this brings me to think about when I don't wear my mask out in public like to the grocery store etc. My conditions, even with their "life-ending" severity, do not usually show on my outward appearance. I constantly have people doubt that I'm even sick. I have people tell me that I look fine, even better than fine, that I look perfectly healthy. And I have people ask me if i'm "all better" when I'm picking up my prescriptions at the grocery store. So why is it that one extreme to the other bothers me so much?
I think it's the fact that you can feel like you're drowning, going to pass out, and physically so exhausted that you want to lay on the dirty grocery floor or concrete in the parking lot and no one knows. That you feel like you're screaming for help in a sea of people and no one notices. But the fact of the matter is that you look perfectly fine. Actually, sometimes even better than fine. Going to the doctor's office is a constant battle in your head because you're wondering whether you should put as much effort as you can muster into your appearance so you look perfectly normal and they want to help you. Or should you go looking as awful as possible, almost as awful as you feel, so they take you seriously. I'm sure you know this battle all too well. Then on the other hand, when you do have a noticeable handicap like a mask then you're treated like a pariah. And if you do go to the doctor's office looking as terrible as you feel then they don't want to take as much care with you. It's as if you're too far gone and they just need to move on as quickly as possible. I know some of you have outward symptoms from your autoimmune conditions so your "mask" is visible most of the time, but still I'm sure you experience both sides of the coin as I do. So are we just cursed? Are we to bear these extremes every time we step out of our front door? Are we destined to "mend ourselves in public" every single day of our lives?
The answer I realized, as I listened to the beautiful music of Art Garfunkel, is yes.
And please listen to this. Be thankful that the answer is yes. This is not our curse, but this is our gift. These autoimmune conditions and our experiences make us who we are today. The fact that we get to mend ourselves out in public every day is a testament to our strength and resilience. It reminds us that we are part of a greater community, a special autoimmune community of people that support one another. It gives us the gifts of patience, understanding, and compassion. It reminds us to help those around us and to never underestimate what others are going through in their lives. It reminds us to smile and be friendly to those around us because we would never want others to feel the pain that we endure. We go out of our way to make sure that those around us do not know this pain. We see things in ways no one else can and that's a beautiful thing. But most of all it has shaped us and it has given us something that others cannot possibly know. It has given us our true selves. There is no choice but to become the strongest version of yourself and to become the best self you can be because that's how we survive every single day. That's how we step outside our homes and face the day. And that's how we become brave and vulnerable enough to mend ourselves in public. Don't ever hate your gift. It's made you who you are and I'm willing to bet that's the best, truest, most vulnerable, and strongest version of yourself.
May you be well :)
~Brooke
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