Aug 4 Daily Entry -- Invisible Illness

Today I lost a place that was dear to me, in a way that will be difficult for others to understand. I have to write this out in order for me to completely understand what I'm feeling right now, and why.

It started as a special treat in my favorite park. Broadway performers were coming to the park stage to give a lunchtime performance of songs from Aladdin and The Lion King. I was so excited. I was going to get to see a world-class performance outside, in one of my favorite settings.

I got a coffee and found a table and two chairs in the shade. I felt like good fortune was just raining down on me. I sat in one chair and lined up the other directly in front of it as a support for my legs. And this is where it all went wrong.

I have been doing this chair arrangement at the park for many months now. Due to chronic medical conditions, I struggle to sit "normally" without experiencing disproportionate abdominal and pelvic pain. (I feel safe in saying this is not standard pain that an average person feels when they sit, and if you read on you'll understand why.) As an easy accommodation, I often use a second chair to support my feet and legs. This takes strain off of my midsection and pelvic floor, and it allows me to sit without persistent pain.

To give some context, I had surgery in June, and as it turns out, decades of untreated endometriosis has "obliterated" my normal anatomy. The disease was diagnosed as stage 4, and the surgeon told me there's very little that can be done. My uterus has taken over. My organs are fused together with endometriomas and scar tissue. And the whole mass of organs is fused to the back wall of my abdominal cavity and, at the bottom, to my anus. My uterus can't be removed, because that would mean removing my colon as well. Currently the only goal of treatment is to manage the pain and to prevent my colon from being destroyed or removed. The condition can't be cured or reversed. I can only slow the growth.

I'm frequently in pain--the type of pain that I can't seem to make people understand--and I struggle to lead a "normal" life. It is hard for me to exist outside of my apartment. Just holding my body in certain ways can cause pain so severe I become nauseated. I can't hold a normal job, because I never know when I'm going to spend hours curled up on the floor clutching a heating pad to my belly because of the pain. It is difficult for me to sit "normally." I hate going to restaurants because I know that sitting at the table like a normal person almost always ends in me back at home, crying in the fetal position. At this point I have a Pavlovian aversion to restaurants.

But for the past few months, this park has been a place I could actually enjoy without worrying too much about any resulting pain. By using one extra chair to support my legs, I could sit. I could spend time there without thinking about my body. Because of this, the park has been a refuge to me--the only place outside of my apartment where I wasn't constantly aware of my body and the pain it was in. I should have known it was too good to be true.

Today, as I was sitting at my table, using my two chairs, a stranger approached me and asked if he could have the chair that I was using as a footrest. I froze, conflicted. I have been trained in my life to say "yes" to any and all requests, even if it causes me personal discomfort. Nice girls are agreeable. Good women say yes. We sacrifice our own comfort, enjoyment, and safety so that the people around us can be as happy as possible. So all of my social training told me to give him the chair.

But to give him the chair meant that I would hurt. It meant that the tugs in my abdominal cavity would start, that my pelvic floor and colon would start to cramp, and that my anus would begin emitting sharp pains. It meant that I would have to stand, or find another place to sit, or give up and go home. I didn't want to hurt or stand so that he could sit.

Essentially, giving him the chair, meant my park time was over. I needed the chair if I were going to stay and watch the show. I had just been sitting there, minding my own business, living my life, when he came up to me and brought it all to an end. Why did my time need to end so he could have his? He chose to have Chipotle in the park for lunch, so I had to go home? How was that fair?

And yet how could I explain all of this to this stranger so that I could keep my chair without having to discuss my fused organs and pelvic pain?

I remembered reading somewhere that "no" is a complete answer.

"No," I said, "I'm using it."

The stranger did not like this answer. "But there are no other chairs," he said. I looked around. This was true. At that time, in that area, all the chairs were occupied. People were coming and going, but if you wanted a chair, you'd have to wait a minute for one to free up. (Or at least that's what I'd have done.) But did that mean I owed him the chair? The show hadn't started, and I didn't want to leave.

"I'm using it" I repeated.

Visibly frustrated, he said "that's one way to treat people," and walked off in disgust.

Now it was my turn to not like an answer. With his last comment, the man implied that I was treating him poorly by not giving him my chair. In that moment, he made me a bad person, and that's not who I wanted to be. It sent me into immediate moral conflict.

I didn't think that I was treating him poorly. Though my internal abnormalities weren't visible, I needed the second chair in order to sit. I was accommodating my needs, which were different from his, but were no less real. In my mind, if an easy and practical accommodation allows a person with a chronic illness or disability to function in the same way that a normal person would, they should be granted this accommodation. This is equitable (though not equal).

In his mind, everyone gets one chair. I had more than one, and that was wrong. It didn't matter why I had an extra. It didn't matter if me giving him my chair would have a disproportionately negative effect on my day, while only benefitting him for the five minutes it would take for him to eat his burrito bowl. He didn't need to know the details, because the principles at play were simple. Everyone should be treated exactly the same. He should get the chair because that was fair. I owed him that chair. I should give him the chair and leave.

It turns out he was right, or at least partially so. Having checked the website, I am disheartened to see that yes, in fact, park rules state that visitors are entitled to use "a chair" and the rules are silent as to special needs and accommodations. Though I needed two chairs to get the benefit that the average person gets from one chair, I this instance, I am not explicitly granted that accommodation.

I won't argue with the rules. I understand that the decision of whether to provide people with equality or equity is a difficult one. No set of rules will ever be completely fair to anyone, and I accept that what is fair to others may place me at a disadvantage. I never want to seek "special treatment," so the reality is that are many things that can be part of a "normal" person's life that cannot be part of my life.

But it saddens me nonetheless. My world is slowly being limited to my couch, and I won't deny that it's depressing. I am the first to admit that this is no one's problem but my own, but that doesn't mean I like being excluded from normal life.

I gave him the chair. I ended up leaving the park, but not before trying to speak with him. I told him I have a disability (admittedly, "chronic illness" might have been a more accurate term) and that was the only way I could sit in these chairs without pain.

He smiled when I said that. I don't know why he smiled at the mention of disability. Maybe because he didn't believe me. Maybe because he was getting what he wanted. Maybe he just thought it was funny. I'll never know. But the smile at my mention of my pain infuriated me.

It reminded me that the world doesn't see me. It reminded me of all the times I had been dismissed by doctors. All the times bosses asked me to give time and energy I didn't have because it was the "right" thing to do to support the "team." It reminded me of the times I missed out on things my friends and peers were doing because my body wouldn't let me keep up. It reminded me of the times I sat suffering in silence through a lecture or a presentation or a meeting or a meal, because curling up on the ground and crying in pain isn't a normal thing to do. The world has no room for people in pain.

Shaking in fury at his smile, I asked him why he believed his comfort was superior to mine. He claimed he didn't. And yet he believed so much in his right to the chair, that when I refused to give it to him, he argued and whined that I was treating him poorly. He would not accept my answer when I told him that I was using this chair, presumably because I was not using the chair in the way he thought was right. I don't know what gave him the confidence to assume that he knew beyond a shadow of a doubt the right way for other people to use chairs, but he seemed certain he had the moral authority.

In short, my needs required me to have two chairs in order to sit. His needs required only one. He believed his needs were universal. He demanded my second chair. He ended up sitting. I ended up standing. His needs were met, and mine were not.

How is the end of that situation any different from the beginning? Either way, only one person's needs ended up getting met. Why change the status quo, then? If only one person is going to get to enjoy their afternoon, why is it him and not me? Why is it assumed the able-bodied person's needs can be met, but the person whose body just won't act normally can't get the extra little bit that could make a meaningful difference in her life?

I get it. From his perspective, he approached a woman in the park who was taking up more than her fair share. He confronted her, he corrected her behavior, and he was awarded with a fine lunch from Chipotle. It probably felt good.

From my perspective, however, I was enjoying public space in the only way I could, and I was asked to give up my enjoyment so that a stranger could enjoy the space instead of me. It stung.

I still don't know what to think of this. I wanted the takeaway to be something along the lines of "if other people aren't bothering you, leave them alone," or "never assume you know enough about someone to tell them how they should act in public," or "let's give people a little grace before we tell them they're being bad people."

But I think what I have learned from this is that the world isn't built for me, and I cannot hope to be comfortable in it. The world belongs to people with "normal" bodies, and that will never be me again.