Autism Answer: Disability in Erotica

Disclaimer: I do not read, write, listen to, or watch erotica. Often. 

I am, however, living in this world so I do stumble across it. And I am a sexual woman who's had reactions that tickle and sometimes ignite certain senses, usually unexpectedly and with a blush of titillation and surprise. 

Sometimes, admittedly, I've looked furtively and cautiously around to check the absolute status of my privacy and have allowed that titillation to mature into the commanding pleasure it hints at, and we've worked together to grow that potential into promise. But, usually, I giggle and tickle and walk away. 

Yet, even without any immersion or innate interest in erotica, I have noticed a couple things. 

Firstly, I am affected by it. Not only in the moment of meeting it, but in my moments of intimacy – both alone and with a partner – as well. In my mind I've played images I've seen, read or heard about. I've imagined I look different, more like the desirable women described or pictured. I've hoped I was making the right sounds and movements so my partner would be as pleased as he would be if having an encounter with women in stories and sexy films. 

Secondly, I don't see a lot of variety. Sure, there are smaller, bigger, a few different colours and a sampling of different preferences. If you're looking for taboo encounters between able-bodied fairly attractive not too old adults, I dare you to avoid it for any real length of time. As I mentioned, I don't seek erotica or porn, but it happens to me. (To be clear: I don't mostly mind.) 

These two things are different issues that might have one solution. The way I'm affected by erotica is personal, I know that. I have my own insecurities and interpretations. Also, I don't actually watch, read, or listen to much erotica so I'm limited in how I understand it. But still, I feel confident that if there were more variety, more types of bodies and the inclusion of sensory challenges creating stories that illuminate needs we often think are limited to us alone, that leave us out of the sexy narrative – more of us would feel comfortable sexually. When we cannot see ourselves in these erotic scenarios that bring millions of people to websites and channels around the world, it most often plants the feeling that we are not desirable or worth the work. 

I am not an expert, obviously, in erotica, porn, or the culture of it. I have admitted more than once already that I don't seek it and rarely take the time to enjoy it. Yet I know it's a real issue. Because, clearly, if I want to see disability represented graciously in erotica it's clear I'd have to work to find it. And according to disabled friends, I'd have to work especially hard to find erotica that stars disabled roles exhibiting agency and desire rather than just as a fetish or novelty. 

I am a straight, able-bodied, unremarkable looking white woman in her 40s. It's not a challenge to see myself represented, and yet even I struggle to feel desirable and intuitive in the bedroom. Again, this is common but personal. Yet I truly believe it would be easier for me to feel free to explore my personal sexual side if there was more variety in the representation of sex, desirability, and bedroom moves. 

A part of my personal issue has to do with how almost like the sexy ladies in literature and on screen I am. The seed has been planted that if I try I can be like them. And because they are the ones people seem to want to see, well, clearly I ought to give it a go. (It's tempting to add a few paragraphs about how I don't like being seen because I'm shy, and how it's important that we don't sculpt ourselves into something to be seen but rather create ourselves based on who we are and who we are proud of being, but that takes us too far away from the truth that these are common things to remind ourselves of because we're contending with a common desire to be seek-ed and seen. Even the shy among us.) 

Interestingly, I often feel more deeply understood and comfortable with my vulnerabilities when I read, watch, or listen to something written by someone drastically different from myself. Someone with disabilities, a boy deciding what it is to be a man, someone growing up in a vastly different culture than my own, these are a few examples of protagonists who have illuminated me to myself. By having such unique experiences from my own they are able to reveal things in ways I was too close-in to realize. 

Less surprisingly, they have helped me see people other than myself clearer, too. They have helped me notice others differently. They have helped me understand my brothers (my mom adopted four boys with autism and various other diagnosis) when they want to talk to me, their big sister, about the unique challenges they face, and interests they have, in the world of romance and sex. By representing themselves and the way they experience the world, they have given me the gift of seeing and of trying to understand. 

They have given me a feeling of kinship with, and interest in, differences. 

If I saw more of that in stories about sex and sexuality, I couldn't help but be more comfortable exploring my own differences. My own uniqueness. My own desires and pleasure points. I'd be more comfortable asking for and seeking my partner's uniqueness, desires, and pleasure points. I'd probably be better at recognizing them, too. 

The only way to authentically shift the genre of erotica into a more diverse and inclusive place is to include diverse artists. My guess is these artists are more likely to create erotic art when they see themselves represented in it. 

Luckily, there are always a few outliers and brave creatives doing what needs to be done. 

So for those of you that seek and see erotica, those of you who like to listen to or read sexy stories, I hope you'll take the extra time to find something different. Something that explores a body you are unused to seeing. Not every time, of course. But now and then. 

Perhaps you'll find something surprisingly sexy! And even if that isn't your experience, at least you'll know you're giving some – ahem – exposure to people who are publicly exploring their intimate selves in hopes of being experienced. 

 ____ 

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: I'm Thankful My Best Friend Is (Still) Alive

 

I'm thankful for my best friend. And I'm thankful she's still alive.

 

My best friend and her husband were hospitalized and fighting for their lives this past summer. COVID-19 positive and in the ICU (one blessing, they were together) they were in pain, struggling to breathe, and having intense conversations about their possible death: What should we do for the kids before we die? Why have we not told them so many of the things they need to know? Not so much about our love for them (my friend and her husband talk openly and often with their children about their love) but about logistics and specifics and what to do with unfinished business. 

 

My friend is a nurse and until that time I hadn't really thought about the part of her job that puts herself and her family at risk for the health of others. I mean, I had sort of thought about it, but I hadn't felt about it.

 

While they were fighting to breathe I was thinking and feeling about it.

 

And after they were permitted to go home, doing better and no longer contagious but still needing oxygen machines and working at getting stronger without pushing too hard, I visited and we talked and talked about it. And about why it is worth it to her. (We also talked about fun light hearted stuff, laughed a lot, ate fun foods, and danced in her living room to our favorite playlists. After all, we believe in a holistic healing approach.)

 

First responders and health professionals are walking into danger in order to help us out of it. This we all know, but it is worth it to take time to feel it too. 

 

And to listen to them when they take a moment to tell us what we might be able to do to help them.

 

When I talk now with my friend she just wishes we would be willing to gather in small groups and wear masks when we go out. She knows it's not fun, but she and her coworkers are exhausted, forced consistently to turn people away when they're sick (there are not enough nurses and doctors, and there's not enough space in her hospital) and they are getting sick themselves, so are their loved ones. 

 

At the moment my friend's mom and sister and niece are all COVID-19 positive. They can't taste things, they're aching and sick and have a hard time moving around, but they're doing alright. No need for the hospital. It's been a couple of weeks and though they are barely better they are not worse, and that's a big thing. My friend's mom works with someone who tested positive for COVID-19 yet refused to wear a mask so it's likely that's where the illness spread from. But, of course, it could have been so many other sources. 

 

And this morning, around two in the morning, my friend got a text from her son - "sorry mom I can't make it to the house for Thanksgiving because I have a fever and I feel sick." My friend called to talk with me about it on her way to work where she offered to pull half a shift because they need nurses. They are always needing more nurses now. More people to walk into the risks in hopes that they can bring us out. 

 

She offered to do only half a shift because her husband will be home today. He's rarely home, though they don't complain about that. He was at risk of losing his work when this pandemic started but then after he had COVID-19 and didn't fully recover it was an absolute. Luckily, he found work in trucking and - though he is rarely home and making far less money - he knows to be grateful. In fact, their youngest son is still unable to find work. He was doing welding work (on pipelines, I think?) but he's been without work for over six months now and has not given up actively looking. He's had a great attitude, and that's awesome, but he still doesn't have a job. 

 

Now my friend is going to chat with her husband about keeping everyone away from their home this Thanksgiving. You see, her son is sick with COVID-19 symptoms and he lives with his brother. Who had a visit with their other brother just yesterday. Soooooo.... all the boys have been in contact with each other and though it is quite possibly just a flu or other illness, they are aware it also might be COVID-19. And my friend is uncertain whether she and her husband still have the antibodies, so she wants to be extra careful. Even though asking her kids to not come over for Thanksgiving sucks and hurts her heart and is unfair to her husband who rarely sees them. Even so, that's where she's leaning. Just in case it isn't just a flu.

 

A problem with COVID-19 is if you do contract it, experts are still unsure how to help you. If you get the flu they know what to do. You're unlikely to die from the flu if you get help on time and are relatively healthy. But COVID-19 just isn't like that. It's still leaving nurses like my friend and her colleagues feeling impotent and uncertain and, of course, exhausted. They care about their patients and they care about their families and they care about their jobs and they care about their skills in treating illness. They care. 

 

I'm so thankful for my friend. For what she does at work, for what she does for her family, and for what she does for me. I'm grateful that she shares her work, her family, her time and ideas with me. 

 

She doesn't ask for much, but she does wish we'd wear our masks and do whatever we can to slow the spread of COVID-19. Smaller gatherings, being willing to shift our traditions to accommodate this new threat, being a brave lone mask wearer, or saying no to invites when we must. She knows it won't stop us from spreading COVID-19 but she also believes it will slow the spread. 

 

She's just one nurse with one voice. But that voice almost died, has nursed her husband when he almost died, has visited her mother and sister and niece (all geared up in PPE of course) to offer support and check their vitals, is going to talk to her kids about not coming to the house for Thanksgiving because she believes it might make a difference. Oh, and she lost a childhood classmate to COVID-19 just yesterday as well. And that voice talks to me often and with thoughtful candor and grace. 

 

I love that voice and I will do anything I can to hear it and keep it alive. 

 

Including sharing that voice with you and giving you my version of her words and ideas. I hope you choose to hear it and help me keep it alive as well. 

 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook)

 

P.S. : Thank you for sharing this space with me, friends. And feel free to invite as many others as you want, mask wearers and non-mask wearers alike! It is a neat thing that we can gather here and discuss our ideas without risk of spreading COVID! Of course, spreading ideas has it's own risks and dangers. But, you know, that's an idea worth gathering here to talk about.

Autism Answer: Seeking a Safe Way to Be Open and Accepting

 

Me and my Brother

“I just wanted to be nonjudgmental and accepting.”

My brother was looking at me expectantly, his big sister who always had something to say about the things he had to say, and had to wait an uncharacteristically long time for my reply.

His confession had caught me off guard and left me momentarily at a loss for words. I was too deep in a thick fog of feelings that understood and feared and felt and didn't know the right answer.

My brother had been assaulted in his apartment by a man he had opened his door to, despite the late hour and unlikely explanation for it. Of course my brother had opened his door to this stranger knocking at an inappropriate hour with a weird reason, that was who my brother himself often was and didn't he only want people to open their doors to him and hear him out?

Oh, my heart was aching and my ideas lacking.

I find myself wrestling often with this question of balance. Not judging too harshly, being open and accepting and helpful and willing to open doors or accept ones opened to me, while being safe and careful and teaching my children to do the same.

This is a big important thing and once I was able to fight out of the fog of feelings and find words, I admitted as much to my brother.

We talked a long time about how valuable it is to strive for a world that isn't so focused on defending itself that it won't risk opening doors when people are reaching out to us in unusual ways at unusual hours. There are so many people like my brother who struggle with social cues and norms and end up craving company and kindness at unusual times and in unusual ways. We talked about how hurt he himself felt when he would knock on a door at an unusual hour asking if he could look at the old cars in the yard only to have the person call him cruel names and threaten to hurt or even kill him if he ever came back. And I reminded him that it wasn't necessary for the people to open their doors and let him in for him to feel less hurt. Had the people – as some had – asked him to come at a better time and not immediately reacted by speaking to him in anger, that would have been accepting.

But there are so many grey areas here. And in the end each situation will be different and often difficult and it's just easier to push people away when they are strange or unlike us. And it's even sometimes safer in the moment.

But in the bigger picture, in the world where we keep kindness alive mostly only during business hours and when we understand easily the problem (dead car battery, missing animal, not quite enough money at the checkout) and push or react in anger when the person doesn't make sense to us and we feel overly inconvenienced or inadequate, or where we overcompensate by being ridiculously (and temptingly) generous and yes oriented, we are not building a safer world.

You know, I don't want you to open your door to my brother when he knocks at 10PM asking to peek in the windows of your cool looking old car. Not unless you want to. But I also don't want you to threaten to kill him or call him a f*&%ing lunatic either. I think you can simply tell him to leave and that it's too late for him to be there. You can tell him that you aren't comfortable and even that you don't want him to come back. I hope you will tell him these things, because I also don't want my brother to knock on your door at 10PM asking to peek in the windows of your cool looking old car. It's late. I'm generally in bed by then and maybe you are too.

I talked with my brother about this and more. I gave him specific tips about not opening his door or inviting people in at certain times or when he doesn't know them or simply if he just doesn't feel right about it. He can simply say no. Or pretend he's not home. There is nothing judgmental about that.

I don't know if the man who assaulted my brother would have moved on to assault someone else, had he not been granted access to my brother's apartment. I don't know if that one “no” would have stopped him that night, maybe even prevented other nights. That is possible. Not permitting the harming of others is part of how we teach not harming others. So, it's possible. Though not promised.

But had my brother not granted access, I do know it would have prevented his own assault. And in this specific instance it is my brother that matters to me. Not society, not the story of how that man ended up knocking on a door to rape my brother, not you and your cool looking old car in the yard, my brother.

I wish he would have known he could say no and still be nonjudgmental and accepting.

And since that day we have practiced and both gotten better at it.

I admit, it's not easy to know how to help when people are extremely unlike us. Or struggling in unusual ways. Movies can make us want to be the one who reached out and calmed a situation down or helped an outlier or struggling person during an extreme time of stress or hurt. But when we're not in a movie we generally have no clue how to truly do that safely or correctly.

It isn't easy. It isn't obvious. Not for most of us, anyway.

But I'm proud of my brother. He was able to pinpoint where he went wrong, he talked with courage to the police about what happened, he leaned on me and our mom to get through it but also took the reins on his own healing and chose lessons to learn. The learnings didn't make the assault a good thing, being raped in your apartment is not ever a good thing, but he did good things with the hurt that happened to him. I'm proud of my brother.

I hope he'll always let me talk and learn with him in similar intense and important ways.

And I hope he and I will continue to grow safer and kinder and a little bit smarter together. 

Hugs, smiles, and love!! 

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: I Want To Point The Camera And Smile At you - A Home for Family

"I want to point the camera and smile at you."

When Jory (my oldest son) was five he would say this, wanting to use my camcorder to take a video of me. Even now, more than twenty years later, I hear the sentence in his sweet five-year-old voice. 

I hear it in part because I have remembered it so often, holding it close the sound has yet to disappear from my memory. But also because that is still, more than twenty years later, who Jory is and how he likes to view the world.

From his earliest years, Jory has loved to see the world and the people in it as part of one connected movie. Everyone plays a part and is written in for a reason. Over the years he has grown this vision into something extraordinary. From being too bossy (he was the writer and director of his brothers, he was quite sure!) to being too laid back (whatever happens, happens and it's all groovy man) to fighting for his right to choose happiness even though the world is filled with war and hunger (he wrote about that HERE) to now, as a father of three and husband to one, he sees his role as all of the above and mixes it up as best he can.

He is writing and directing his story, but his story is not only his own and so he asks and allows the narratives of others to influence his. Not only that, he also reaches out and asks for help. Ideas. Collaboration. 

This is how he sees the world: We are all here together experiencing this epic story and it is incumbent upon us to be both inclusive and decisive. Know your goal well and invite others to help you get there. Jory has a way of believing in his independence and responsibility while not shying away from reaching for support from others.

He loves to bring a team together and inspire everyone to share their strengths, ideas, and hard work - something he does well as a movie theater manager. (He misses it for sure! Movie theaters are still closed due to COVID-19.) 

At the moment he's using his skill as a gatherer of community and support to help his family find a home. 

They are not homeless. And in truth, they don't have to be homeless even if they can't quite find something before their current living situation disappears. However, family help options are slimmer than usual and not the forward motion he and his family are working toward. (A strange and wonderful shifting of places is happening everywhere in my family.  It's exciting! But because we are all in this unique transition there is less reliable space to offer.)

The home he and his family are living in at the moment is my mom's home. However, it will no longer be hers by the end of the summer (which, by the way, is exciting! She and my brother Dar are embarking on an RV life adventure!) and so Jory, his wife, his daughters and soon-to-be born son are looking for something affordable in the area. Admittedly, they are happy to move away from the area if Jory can transfer to a Regal Cinema near a new home. But he truly does love his location and the people he works with. 

And, as is Jory's beautiful way, he is reaching out and inviting us to play a role in this story! 

He created a GoFundMe fundraiser, in hopes that the financial burden of first and last rent, rent applications, and moving in general, can be shared. 

He and his wife are reaching out to everyone they know to ask for ideas, advice, and recommendations. 

Jory's fundraiser: A Home for our Family

Admittedly, they are nervous. Transitions tend to create anxiety even in the best and easiest of times, but when you are trying to find a home for your family and start on an unknown brand new journey (not only will this be the first time they live together as a family without other family members there to help, all the helpful family members are in transitions of their own and will likely be quite far away) the anxiety threatens to turn into full-blown paralyzing fear that leaves you sitting around hoping your mom will swoop in and fix everything. (Or, wait. Is that just me? Maybe I shouldn't have said that out loud. tee hee!)

Well, this is me - his mom - swooping in and not fixing everything but asking if you are able to play a role in this story and help us build something: a home for his family out of a community of characters that cares.

If you are able to contribute something financially, thank you! If you can share the fundraiser on your social media, or in an email to someone you know, thank you! If you have ideas, experience, thoughts that might help them find a safe place to live, thank you! They are hoping to stay in the Simi Valley, California area (again, that's where the Regal Jory works at is) but are happy to move elsewhere. This is an exciting time in their lives and beginning somewhere new could be part of the Universe's plan. It's hard to know. This movie is not yet at its end. And we are not unaware that creating something beautiful is always possible and not location dependant.

Regardless of whether or not you are able to take an action we can see, I trust you - who have read along - are playing a part in this story. And for that, I thank you!

In the words of five-year-old Jory: 

"I want to point the camera and smile at you."

Hugs, smiles, and love!!
Autism Answers with Tsara Shelton (Facebook)

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Link to Jory's GoFundMe: Fundraiser by Jory Shelton
If you want to email Jory with ideas or recommendations: jory1993@gmail.com
If you'd like to connect with him on Facebook: Jory Shelton

 

Autism Answer: Fort Building with Big Box Play

My oldest son, Jory, is famous among family and friends for being the most elaborate builder of forts. (He called them a "base") No furniture, blanket, or heavy item for holding things in place was overlooked when he was in base-building mode. He would take over the entire house building a base that had two floors, a tv room, a game room, you name it! 

And now that he's a dad (two daughters and a son due in weeks!) his base building has grown into something equally as beautiful - connection building. 

He connects with his kids and remains playful. Also, he uses all the furniture and we have nowhere to sit and sip coffee.

So it almost felt like coffee time in our family home was being offered a rescue when I was given an opportunity  to try out a BigBoxPlay system! It's a cool fun way to build a base without using all the furniture and blankets! ;D

From Disabled World: "Disabled World was offered a BigBoxPlay for free from www.BigBoxPlay.com in consideration for an honest product review article. Like all review products Disabled World receives, the item was donated to a third party."

Insider Info: I was that third party!

 

Simply Put: A Big Box Play modular system is a cardboard box style of fort building with previously prepared easy to build pieces and parts. It's meant for kids between the ages of 2 and 8 (my granddaughters are 2 and 3 so we were perfectly matched!) to have a little fun with building, playing, imagining, and creating. 

I put it together - with a little help from the girls - according to the directions. And then my son, their dad, come along and got creative reusing and re-imagining a few parts and pieces to make something a little different. It was perfection! And precisely what the BigBoxPlay company encourages. 

We have had the castle fort built for over a week now and it is still standing strong (despite having gotten a little wet from our sprinklers, we keep it outside) The girls like it, and so does the dog.

I offered to review the system and figured it would be nice to share my thoughts with you, too! 

"BigBoxPlay is an indoor playhouse that you build with your children. My granddaughters (aged 2 and 3) and I chose to build it outside because, well, it is quite big! Hence, "Big" box play. ;D

My granddaughters are a bit young (and impatient) to help out much in the building process, but they did help. And we had fun. Mostly, though it was her dad and uncle and me that built it. It is fairly simple and modular. So when my sons decided to get a little creative with what went where, they were easily able to. Which resulted in a cardboard box style castle for my grandaughters that is custom made for them! The system is durable, fun, and can be decorated with crayons, stickers, paint, etc. (I drew a heart on it and my granddaughter got mad at me because it is her castle. giggle!) 

It takes up a lot of space, so we keep ours outside. We were concerned that it wouldn't last since it is made out of cardboard, but the cardboard is surprisingly durable and it still stands strong! After a week of rough play and even getting a little wet from our sprinklers. 

If you are looking for an indoor playhouse that can be built as a family, reimagined and reshaped, drawn or written on, and is likely to bring out the playful side of you, then I recommend BigBoxPlay!"

I'd like to add, as I think the Big Box Play website itself mentions, the tunnels and spaces inside the system are particularly attractive to kids who seek small spaces. This is common in children with sensory challenges and may offer a safe space to spend time in. Of course, it may not. I just felt it would be pertinent to mention.

So now we have a fort outside and our furniture is safe from Jory's base building. Coffee time in our family home is now complete with comfortable sitting space! 

I hope you are able to do something similar with your kiddos this summer. Something hands-on and together, fun and creative, and something that protects your coffee time! ;D 

I know we are all still in a strange place in the world. Things are uncommon and bringing up important but sensitive discussions and new ideas. In the meantime, we can get down with our kids and connect. No matter what happens, being connected with our children (I love doing it through play) will help us make the most of it. Build a fort, get inside, and play. 

Hugs, smiles, and love!!!
Autism Answers with Tsara Shelton (Facebook)  

Link for  BigBoxPlay
Link to all articles, news, and reviews on Disabled World 

Autism Answer: COVID-19 In Small Town Texas - My Story

“I’m going to isolate myself in the back bedroom. I have a cough, slight fever, fatigue, headache, and I can’t breathe. It seems like I need to stay away.”

I said this to my husband as we drove back with his barbeque sandwich from the Texas town nearest our small Texas town. 

For the next few days, I struggled with the cough, barely a fever, serious fatigue, headache, and shortness of breath. I did as I’d heard and read; stayed home and didn't go to a doctor or hospital, did my best to isolate, waited to see if my body could simply fight the illness on its own without spreading to others.

Obviously, I wondered if it was the novel coronavirus 19 but, regardless, I was sick and didn’t want to share that sickness.

However, after a few days (three, I think?) I was left with a cough, horrible shortness of breath, and fatigue, and I began to be scared. I couldn’t keep my eyes open, I felt like I was drowning. Also, my husband is nearly 70 years old and black - and it becomes necessary for him to visit and help our black family members, particularly the older ones, often - most of them specifically at risk, so I truly wondered if I needed to be more forceful with him about the isolation. 

In a brief moment of awakeness I looked up the nearest COVID-19 testing center to me. According to my search, it was forty minutes away and I needed an appointment and/or recommendation from a doctor. I was so sick, honestly, that the thought exhausted me and I couldn’t do it. Isolate, social distance, wash my hands, wear a mask, these things are what they would tell me even if I did prove to be positive, so stay home and do that I told myself, passing out and struggling to breathe.

Two days later I was not worse but no better. I called the nearest hospital and asked for advice. “We can’t tell you what to do but we’re here, we’re here,” the woman said kindly.

I was so tired but not sleeping because I couldn’t breathe. I crawled back on my bed and silently cried.

The next day I asked my husband to take me to the E.R. 

He took me immediately and when we got there they would not let him in, only the sick person. Me.

They asked me COVID questions, and I answered honestly. My cough was slight, my fever gone, my headache gone, but the fatigue and shortness of breath intense indeed. I had to lean against the wall to answer all of these questions. 

When I was seen I answered the questions again, tried my best to be upbeat and friendly, not a suck but honest about my condition. They asked if I thought I had COVID and I answered honestly, “I don’t know but I think have something.”

Chest X-rays showed something small on my lungs, nothing shocking. My oxygen levels were good. We wondered if it was anxiety. I was pretty sure it was something else. “Bronchitis, maybe?” they decided and offered to give me a steroid shot. I was so sleepy and desperate for breath. “Yes, please, anything.”

I wondered why they didn’t test me for COVID, but was too unwell to think straight and ask. I had another moment of shock as they gave me my bill (I have insurance, but over $1,000.00 was left for me.)

When someone from the hospital’s hospitality department called me the next day to check on me, I asked. “Why didn’t they test me for COVID?”

“Well,” she replied, sort of hesitating, “we’re regulated by the state and they have strict rules about testing. We can’t test you unless you have all of the symptoms and we rule several other things out first.” 

“Huh, okay. I just wondered because both my husband’s age and race make him particularly at risk. Anyway, thank you.”

Two days later I felt the same, no worse no better, and I called the local medical clinic and made an appointment to see a doctor.

Again, they would not let my husband inside and greeted all of us at the door with COVID specific questions. Again, I answered honestly and was asked to bring my circled paper to the receptionist, pointing out my symptoms as I signed myself in. I did that.

Eventually, after struggling to breathe and trying so hard to be upbeat and friendly, I was met by the doctor. I was immediately lucky enough to suddenly have a long moment of comparative comfort (this did keep happening over all the days of my illness, I would have waves of feeling fairly good and get oh so hopeful that finally I might feel better, only to have the wave crash down on me and bring me nearly to my knees with fatigue and a feeling of being unable to breathe).

Again, the doctor asked the questions and I answered honestly. After he listened and looked and measured, he agreed that maybe I had bronchitis or walking pneumonia. “I’d also like to test you for anemia if you don’t mind having labs done?” 

“I’m happy to have lab work done. I’ll do almost anything just to feel better. Will you test me for COVID?”

“Well,” he began, “we’re regulated by the state. I can’t test you for COVID unless you meet so much criteria and until I rule out a whole bunch of other things. Even if I call them I’ll be on the phone for over an hour only to hear no.” 

“Wow,” I said. “That’s not cool.” 

He didn’t reply, but sent me on my way for lab work and promised to be in touch with results. He also prescribed steroids and antibiotics for bronchitis and pneumonia. (And I was gifted with another bill of nearly $600.00 - thank goodness they let you pay later at these places.)

Before I even picked up my meds, at the urging of my mother who had just easily gotten herself a test for  COVID in California, I tried finding a testing center again. 

This time I found one only 35 minutes away in a town I am familiar with. Something about how desperate I was to feel better had been stopping me from being able to do a better job of seeking help for myself, but this time I didn’t feel as overwhelmed and called to ask them if I could come in.

“Of course! Come on in! We’re open till 8PM. No need for an appointment, just bring your insurance.” 

“Oh, wow! That was so easy. Everywhere else has shut me down.”

“Really?” she asked, sounding authentically surprised. “But, why?”

“Something about being regulated by the state.” I had a sudden crash of uneasy breathing and fatigue, so I quickly thanked her and hung up the phone.

The next day I showed up wearing my mask, coughing, and struggling for breath. They asked me to wait in my vehicle while doing my paperwork. They met me out there to first ask my symptoms, check my vitals, and swab me for flu and strep. Simple tests that were not fun for me but seemingly pretty easily done. 

The flu test came back positive for flu A, I was negative for strep. Yay! I had the flu! Now I made a little more sense to me. Why on earth had nobody tested me for flu before this?

I waited a while and was met by a physician’s assistant who did the COVID-19 test. She asked questions and agreed with my doctor, only she had more information having done the flu test and sounded more certain, I had a flu, and now I probably also had atypical pneumonia and maybe bronchitis.  I admitted to her that the doctor I had seen the day before said the same thing, prescribed medications for me but I had yet to pick them up. “Take the steroids and the antibiotics,” she said, looking at me with piercing eyes that cared. “If you don’t this will probably get worse. Tell me you’ll take them.”

“I will, I promise,” I said, almost shyly and slightly ashamed of being caught not taking care of myself.

I did as I was told: took my medicine and got better.

A few days later I got test results back. I was not anemic and I tested negative for COVID-19.

Okay, cool!

But boy did I wonder a few things.

Clearly, COVID is on the minds of every place I went with questions about my health and my similar to COVID symptoms. They were screening with specific to COVID questionnaires at all the entrances, not allowing anyone other than the patient or a minor patient’s guardian in because of COVID, yet they could not test me for COVID. Not until I somehow proved over and over that my illness was not other things. In the meantime I was given hefty bills to pay and a feeling that they didn’t think it was COVID (since I wasn’t tested). Also, it took several different medical locations before I was tested for the flu. Why?

The state seems to not want to know if I had COVID. My husband thinks they avoided testing me for the flu because there isn't enough money in it for them. I don't know about that, but I do know that I wasn't going to be tested for COVID-19 easily, even though I had several symptoms and was asking about it, so whatever the numbers are regarding COVID positive people in rural Texas, there's no way they're right. No way. We aren't tested unless we work at getting tested and it isn't as simple as going to our local hospital or clinic.

I was sick and admit I wasn’t the best advocate for myself. The energy it took to show up, answer their questions, was a lot. I did ask about the test, but didn’t push for it. I admit I didn’t feel I needed to know whether or not I had COVID I just needed to know what I did have. I knew I was sick, so I isolated, washed my hands, was a much better person regarding caring about not spreading my illness than I ever have been and I plan to be that way from now on (I am grateful for learning that during this strange time in the world. How my, “oh, I’m fine, I’m okay, I don’t have to be careful because I’m tough and rarely get sick but if I do I’ll handle it,” attitude was not just foolish for myself but putting others at risk.) but I do think that knowing the numbers of people who do have the virus is useful for the state. 

A state that regulates the test into barely being used.

I'm glad I feel better, I'm glad I didn't have COVID which is a highly contagious selfish virus. But I only know that because I kept working at knowing it.

I did not need to be added to the COVID-19 positive people here in rural Texas, but how many of my neighbors did or do? It is really hard to know.

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Autism Answers with Tsara Shelton (Facebook) 

Image: Me laying in bed while sick and sleepy