What if you could not participate in normal activities?
That is something many disabled people face daily. Society is not built for us. From steep stairs, broken equipment, no ramps and even doors that are not automated, disabled people often look at the world from a distance. There is so much going on around us, and we want to be ourselves and be a normal person.
One of the worst things I've experienced after being diagnosed autoimmune is having to stay home often. It's not just the lack of spoons. It's also the people who are going to be there. Nothing against them, but I do not like catching anything from them, especially this time of the year. COVID is also another lingering concern.
Yesterday was supposed to be a special day. It had been over a year since I had visited my in-laws at their place. Time, money, being sick, work and more kept us apart. I was excited. Even as I drove up, Tips and Calvin behind me and Brian next to me, I was imagining tea with my mother-in-law. We used to sit in the kitchen with a hot cup and just chat.
Despite the chaos of handling a pitbull in a brand new location, we went inside without an incident. Then, a few minutes later, my mother-in-law announced that brother-in-law 1 was showing up. Not even two days ago, brother-in-law 1 called us and said his child was COVID+. And my mother-in-law was letting him into her house...where almost all of us are autoimmune.
I was pissed. I got a little loud about brother-in-law 1. I explained why I was upset. Nobody batted an eyelash. My husband was working on my father-in-law's computer, and his ear was occupied by his dad (who talks a lot). My son could not help because he did not understand the social situation, being neurodivergent.
By then, I had a mask on. I tried my best to stay away from brother-in-law 1, ducked and covered and went out the door without thinking. The whole scene was treated like nothing, like I was the person in the wrong.
A few things I wanted to point out:
Yes, I was initially angry with my husband. But then, I remembered that my father-in-law is a chatterbox. HE DOES NOT SHUT UP and does not give you the chance to pay attention to anybody else except for HIM. Brian did not hear the whole exchange, and he DID educate his parents once more about what they did wrong later on.
I have told my in-laws on several occasions that I was autoimmune and that people who are sick need to stay away from me. It has been the norm for over two years now. If my mother-in-law is going to invite someone sick to her house, it's on her. I can't be there. Yes, it's by my own choice, but I prefer that than a possible hospital trip.
The car keys were locked inside the house with my husband and I did not realize it until a few minutes after I stormed outside. I drove up and handed the keys to Brian after we parked. I figured we were going to be visiting for a few hours, and it would be nighttime, or close to sunset, when we left. I do not drive well at night.
My husband Brian did not have his cell phone on him (he forgot it at home by accident). He did not know what was happening until later. My mother-in-law was texted and she did not get back to me until much, much later. Like, we are talking almost two hours later.
I could have called brother-in-law 1 too...but I was so pissed off at him too that I could not talk to him. I would not have been able to be civil. At this point, though, I do not care. Realizing where I was in the pecking order in the house, it was easier that I made my exit.
Of course, I could have called their house phone! But if nobody was answering their phone, I could not solve the problem. Not to mention, my anxiety over phone calls because of a decade of being a call center worker would not have helped matters.
The house was locked, and I did not have keys. I could have rung the doorbell and yelled, but it risked exposure. I already escaped brother-in-law 1. I preferred staying outside in the cold and risking something else than possibly having COVID through a casual, open exchange.
Yes, I was eventually aware that my husband and son would come in contact with me on the way home. But at least the exposure was minimal this way. They'd go from house to car to house. I'd be picked up and go from car to house. If we are COVID+, then we are already isolated.
All and all, disrespect was the foundation. It was topped by mistakes and miscommunication on all sides, with some sprinkling of drama, irony and plain bad luck. But it told me another story: one of another disabled person, excluded for her needs.
I get it. My mother-in-law is going to open her door to her blood children. But much as my father-in-law says I am like their child, I was never raised by them. I would never be as cherished. No matter what I tell them about my health, it is not as important. I am too young to be this sick. I am lazy and mooching off their son, who works very hard. Which he does, by the way. But that's not the point.
Here is where the bookstore saved me.
I thought the ordeal would be over soon, since I was outside. But it did not. After over an hour of being outside, I texted my mother-in-law where I was going and just walked. I was cold and hurt. My destination had been on my wish list since it opened and I knew it was within walking distance.
It was the Curious Cat Bookstore.
It did not take me long to get there by foot. The first time I walked in, I felt welcomed. It was not only the people tending to the stacks and the books in every corner. It was the atmosphere. For someone who experienced trauma and is neurodivergent, it was the most calming thing. I did not feel like I had to go through my bag of tricks to keep calm. I could walk slowly and get on the floor and crawl around to look at the titles. It was small and cozy.
And it brought back so many memories.
I could say it's my father. He first taught me to read. I could also picture my uncle (my mother's older brother), who encouraged my love of history and let me borrow from his extensive library. There were my grandfathers, one a priest and the other a Nazi labor camp survivor. All of them slipped in a kind of literary learning that was magical, especially when walking through the small rooms and aisles.
Feeling like I spent enough time there, I returned to my in-laws', but the situation had changed. I had no responses or calls. So, I settled on the trunk of the car and waited, and waited, and waited...
It was another hour before I decided to leave again. I left my mother-in-law another text and returned to the bookstore. I felt like I was suspicious, though. This time, I went to the cashier and told her what happened, reassuring her that I was not homeless or a thief or anything. I know it was probably strange and not socially acceptable, but I was nervous, anxious. I wanted to be back amongst the magic and just feel the covers and smell the pages.
And I did.
I went through the bookstore again. I eventually settled on a rocking chair in the activity books room. Then, I got on the floor and looked at the books. between that room and the next. Eventually, the large fantasy books on the bottom shelves got to me.
They were just like my books - 700+ pages, fantasy themed and with lovable main characters.
History, magic and adventure, all in one place!
Brian did pick me up shortly afterward, after I texted my mother-in-law twice more. We all tested negative for COVID so far, but I am praying that nothing was transferred. Other than teaching me lessons, the occasion reminded me that many people expect others to cross boundaries and handle situations they can't.
How would you feel if somebody with COVID walked into a cancer ward? An OR or the ICU? Your child's room? Would you say something if it meant their lives?
This is exclusion to someone who is disabled by being autoimmune. It is also ableism, expecting me to just "deal with it" the same way they are. You cannot change my mind.
My husband and I had a long discussion on the way home. We wanted to communicate before the accusations and pain came out. I explained the hows and whys and he understood and he told me his side of the story. Brian was always on my side, saying that he was educating his family repeatedly that they could have killed me and themselves. All of a sudden, the issue was important.
It should not have to happen to you in order for you to care.
As of a few minutes ago, brother-in-law 1 has tested negative for COVID two days in a row. I want to wait another day or two before I emerge. It gives me time to think. Even after reviewing the events and feelings from yesterday...I should have expected it from people who are determined to always misunderstand me.
And that is a lesson well learned.
Namaste, everyone! Have a wonderful day!
#MostUnwelcome #DisabledDoesNotMeanUnable #DisabilityRights #Neurodivergent #YouNeverKnow #Dysfunction
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