Autism Answer: Being Seen

A camera sitting on the floor

Warning: This post is about me and how I feel and how I think and what I notice.... oh, what's that? You already knew that? You have been here before and recognize a pattern? Yes, I see. Well, thank you? tee hee!

Confession: I am kinda bothered by the amount of plastic surgery, laser hair removal, fancy serums and other similar things that have become fairly commonplace.

In part I am bothered simply because I'm inclined to advocate for less manipulation of what is natural. I recognize in these procedures and items a desire to sculpt and bend and shave who we are until we like it better. Maybe to fit in, maybe to stand out. (I am impressed by the availability of these things, by the way. I am only bothered by how common they seem to have become.)

However (and here's the confession part) I am also bothered when I notice how popular these measures of manipulating our appearance have become because I worry I will appear increasingly unhappy and haggard and, well, yucky to look at, in comparison to my peers.

I admit, I hardly think about it. What I look like compared to my contemporaries, I mean. Maybe because I live a fairly sheltered life. I mean, I work from home, I am not obligated to attend meetings or video conferences, and my soul mate works here with me too, so I'm less likely to wonder if he's comparing me to other lovely ladies. (Our co-workers are also ladies, but they are of the feline variety. And since I am in charge of making appointments for them and doing their shopping, I am confident they are not having work done or spending lots of money on fancy creams that make them look fresh faced and healthy.)

I love wrinkles, my own and the ones on others. I love grey hair, I love the look of age on people and am happy when I see it on me. It's not aging I'm talking about.

I worry about looking unhappy or haggard, less fresh faced, less healthy.

For some reason I want, have always wanted, my happiness and energy to show, to be noticeable outside of myself. I don't remember how young I was when I stopped looking in mirrors, but I was fairly young. And it was because I would FEEL so happy and full of life, but then I would SEE just some pale, plain, girl. Not the energy I thought should be reflected.

Silly, I know. I am happy and I have happy energy regardless of whether it can be seen. Why do I want it to be seen?

Why do I want the me I feel like I am to be seen?

Why am I less content when it is only me who knows how I feel?

I'm not entirely sure. But just now, as I was typing this, I had a thought. I realize one of the reasons I want my natural way, my comfort with choosing to blossom naturally (while caring about myself at the same time, I don't mean to infer that I don't try to manipulate to some degree by being careful of what I put in my brain and body) is that I want my beliefs to be valid to others. I want to be seen as having a point with potential.

Like, if I say I am comfortable with myself and find strength in feeding my body and mind nutritiously, that I try to make sure not to live too sedentary a life in order to stay healthy-ish, that I am happy in my choices, that I feel it is enough to be me naturally, I want to be believed. To be seen as making sense.

And, darn it, that means I want to be seen as happy and healthy. Not haggard and yucky.

But when so many people are taking advantage of the more extreme versions of looking that way, I worry I will seem less so by comparison.

Silly, right?

Wanting to be seen is not silly.

Parents of children with differences and disabilities work hard to ask for that on behalf of their children because it is not only not silly, but necessary and urgent.

But wanting to be seen as happy and healthy just to prove my point is valid?

That's silly.

Right?

Hugs, smiles, and love!!!!!

Autism Answers with Tsara Shelton (Facebook) 

 

 

Autism Answers: Little Shifts

 

Shifting view of a moment out our front door window

 

 

I'm surrounded by little shifts, and I'm shifting in little ways. Each shift, though, brings me to somewhere far enough from the first shift to make all the difference.

 

Of course, this has been happening throughout my life and will continue to happen. Lately, though, I'm noticing the shifts.

 

I was living in one country and now I am living in another. It doesn't matter which countries for me to make the point I want to make, and in fact would distract us. Suffice it to say, the countries are not very different from each other and yet, simultaneously, they are. It is all the small shifts in difference that make all the difference.

 

For me, this country is encouraging more comfort inside and outside myself. It is helping me breathe in and out more easily. 

 

When we are struggling to breathe easily, when our homes or work places or communities feel suffocating or overwhelming, we can take advantage of little shifts. We can do them purposely, we can ask for them specifically, we can notice over time if they are helping. 

 

My autistic brothers have always seemed to be more affected by shifts. More influenced, more in need of accommodating them or dealing with them or, when we've shifted well, being freed into a more comfortable state because of them. 

 

Long ago doctors would prescribe moving to a more appropriate environment when an illness or unwellness plagued someone. This is something we can do, with or without a prescription. Sometimes we'll know what we need, sometimes we won't, always we can notice how we feel living inside of our shifting world. 

 

I don't think I need to live in this country to be happy and breathe easy. But I do notice it happening and am noticing, best I can, why it's happening. In that way, I can attempt to bring those shifts with me wherever I go, if I go. 

 

I like noticing that the shifts are little because that feels easier to do on my own. Little shifts. And noticing the big difference small shifts are making reminds me not to throw my hands up in defeat if I can only do small shifts. Instead, I feel powerful shifting a little. 

 

Each little shift is a thing I did that might make a big difference for me, for someone I love, or for the planet I love. 

 

We are surrounded by our environment; our home, our thoughts, our world. Each shift shifts us.

 

Little shifts are what big shifts can be made of.

 

Hugs, smiles and love!!

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Teeth Aren't Supposed to be Bright White

I don't know why it bugs me as much as it does, this culture of wanting a pretty white smile. Okay, maybe I know why. There are a few reasons.

 

Reason One: bright white teeth are not natural. Yes. our healthy enamel has a natural white hue to it, while the stuff underneath (dentin, according to my search engine) is yellowish. In general, healthy teeth are yellowish in color, though everyone is different. If your teeth are naturally white, they can be healthy. If they are naturally quite yellow, they can be healthy. But presuming white teeth are the prettier, better, healthier, cleaner teeth just isn't true. 

 

Reason Two: my autistic brother, Dar, has quite yellow teeth. They are also quite healthy teeth. He is lucky that there's a fair amount of space between them, they're easier to clean that way, and he doesn't have the best motor skills so excellent tooth brushing doesn't come easy to him. Forget flossing! However, his big beautiful smile, when bestowed upon people, is sometimes followed up with a comment on the color of his teeth. I'll say it plainly: A lot of people look at my brother and see a disabled man with yellow teeth, the yellow teeth adding to their already predisposed discomfort around a disabled man, due to their predisposed discomfort around yellow teeth. 

 

Reason Three: I feel like (and here I admit it's simply my feeling, I've done no research or anything) there is enough money being made in the tooth whitening world that it will be really hard to shift this frame of mind. I mean, with the money being made it's gotta be worthwhile to keep pushing this "whiter teeth are better teeth, of course you want whiter teeth, we can sell you whiter teeth" narrative. And with little to no tooth sensitivity, too! 

 

Reason Four: speaking of money, the insidious bias that whiter teeth are better teeth means we practically can't help but judge each other as cleaner, healthier, classier, when we have whiter teeth. So to get ahead in the world, maybe we should whiten our teeth. Because that's how you get the job, the partner, the trust, the great customer service, by appearing healthy and clean. A nice clean healthy someone we want to be around. Which means you need to have money in order to whiten your teeth (even if you choose to use oil pulling, the oils cost money) so you can get the job, the partner, the trust, the great customer service. 

 

Reason Five: I think I'm bothered because it works on me. I get excited when my teeth look whiter. I take note of what toothpaste I used that made my teeth looker whiter and I try to find it again. This is fine, as is whitening your teeth if you want, but I don't like how insidious it can be. How I feel more comfortable smiling when my teeth look whiter because I know the receiver of my smile won't be awkwardly distracted by the yellow of my teeth. A natural yellowish healthy tint of teeth should not unfavorably color the joy of a smile. (Okay, I admit to barely actually thinking about the color of my teeth when smiling, but it does happen now and then.)

 

I feel like the whole "having white teeth is better" fiasco is an example of a lot of things that simply go too far. Things that go from misinformation to disinformation. Yes, teeth are stained by things we eat, drink, and do. Smoking stains them for sure. So can my beloved coffee. Also, malnutrition breeds less healthy everything, including teeth. As does poor mouth maintenance, leading to discolored teeth. This feeds the misinformation that white teeth, then, must be clean cared for teeth while yellow teeth must be stained neglected teeth. Then, when people start selling tooth whitening products, the misinformation turns to disinformation. The advertisements insinuate that, clearly, you want whiter teeth because those are better, so here's why you should get those whiter teeth with our product. Everyone we like to look at on our screens has white teeth, unless they are the homeless one, or the junkie. Etc. We are purposely sold the lie that the whiter the smile, the cleaner and better and more successful and healthy is the person behind the smile. 

 

I know, I know, it's silly. It's not a big deal. Whiten your teeth if you want to. I continue to smile easier when I know my teeth are whiter. 

 

But it's too bad, isn't it? Wouldn't it be cool if we all agreed that teeth can simply be healthy? Not have to look a certain way to prove it? Let them be missing, crooked, far apart, crowded. Fix the stuff that makes it harder to be healthy, let the rest be beautiful in it's own right. That would be nice. And more affordable.

 

When my brother smiles big, when he makes direct eye contact and gives a huge from the soul of himself grin, it is bloody gorgeous! 

 

Those far apart yellow teeth of his rival the sun for the light they bring into a room. 

 

Hugs, smiles, and love!! 

Autism Answers with Tsara Shelton (Facebook)

 

My brother, Dar, in a pool wearing his gorgeous grin

 

Autism Answer: A YES Day Expansion Pack for the New Year

 

YES to coffee, books, and bare feet.

Today – Friday – is my “YES Day”. What is a yes day, you ask? YES! I love that you asked! 

In a nutshell: My YES day is the day I say YES to the things I want throughout the week.

I don’t remember how many years ago I started saying “YES” to myself instead of, “No, not healthy” or “No, not responsible” when I wanted something. These were things like foods and too much coffee or reading/dancing/walking/chit-chatting while sipping too much coffee. I don't remember when it started but I do remember loving the change I made for myself.

I would want to eat a pie (YES, I said a pie, not a piece of pie) and tell myself, “Yes! On Friday,” and then I would want to read, rather than work, and tell myself, “Yes! On Friday,” and then I would want to drink too much coffee while hanging out with my kids rather than do dishes and sweep floors and would excitedly say to me, “Yes! On Friday.” Suddenly I was telling myself YES to all the things I wanted while still getting most of my work done and not wildly overeating junk food. The cool thing about putting everything to one day is, well, it’s just one day. You simply aren’t going to eat all those pies. And even if I do actually read, walk, dance, and chit-chat all day rather than get stuff done, it’s not a big deal. In fact, it’s fantastic and fun!

Of course, in reality giving myself a YES day doesn’t play out in such an organized fashion. If my sons are able to chit-chat with me on a Wednesday I’m going to take advantage of it. And if people are gathered around pie and coffee on a Saturday while I’m around, I’m going to appreciate such luck and enjoy it. And if, on a Monday night, someone puts music on and starts singing along and dancing in the living room while I’m changing cat litter and knowing I need to still sweep and clean toilets, I might instead join in and dance along. The point of my YES day is to love my life and keep me healthy. Sometimes that means recognizing when important moments are happening now, not on Friday.

But in general, I tell myself YES and give the fun to Friday.

This has been fantastic for me! And I plan to keep it going as long as it continues to be fantastic. Although, now, I’m considering expanding it a bit for the new year and seeing how that goes.

I’m thinking I might give myself a YES week at the end of the month; for the less concrete, more ambiguous things. The things that I tuck away in myself to deal with alone, or not say out loud for fear of being misunderstood or for fear of being disliked, or wrong. The things that are whispers in my heart and or mind that can turn into snapping at the wrong moment or avoiding situations or feeling low self esteem. The stuff that makes you want to yell at a character in a movie or book, “Just talk to them about what your thinking! Just tell them what happened! Just say what you’re worrying about!”

To be completely candid, I don’t have a lot of that. In fact, I have more of a being completely candid habit. (TMI – too much information - should be my middle name. Actually, maybe my first name.) But I am human and so I do have those things.

Main Example: When I talk to my sons, every single one of them, there are different things I worry about and fear saying or telling them. I want to nudge them, but not push. I want to reveal things I notice about them, but not give them a feeling of being judged. I want to be supportive, but I also want to give them the space needed to support themselves. In these areas of want I have so many things going on in my heart.

The thing is, though, I don’t want to be so afraid of pushing them too hard or having them feel judged that I don’t do anything, or I don’t do enough. Or, actually here it is: that I don’t do the thing I feel I should do. I don’t say the thing I feel I should say.

So, the expansion pack on my YES day: say YES to these deeper feelings, the desire to express them. Say YES and tell myself that the last week of the month (or something similar) is when. That way I'll have several weeks to think about whether or not I’m being fair with the thing I want to say or simply reactionary. Whether or not I truly think something should be done or whether I think someone else thinks it should be done. And to get the courage to say and/or do it well.

I’m hoping, as it has been with my YES day, this will lead to happy habits. Where I hardly notice the “not yet” aspect of putting things till Friday and always notice the “now is the right time” opportunities when they show up on a different day. 

It's funny. I don't think of myself as needing a YES week for these deeper things and yet, as I tell it to you (confession: at first I was thinking it would be more of a good idea for other people, particularly types who tend to keep everything inside and then explode their feelings creating unnecessary fallout) I'm excited and surprised by the many things I already know I will consider taking care of during my YES week. I already kind of do this by taking advantage of my PMS. When my hormones cause that familiar moodiness, I listen to what comes to the surface, examine it's value, and take care of the stuff I recognize as being a lasting issue for me, not only when my mood is sensitive. However, that is a little less proactive than the YES week I'm imagining. When I use my hormones I simply notice when things annoy me (admittedly, there's rarely anything) but now I plan to look. Like the difference between being offered cookies by a friend or perusing aisles at the grocery store with the intention of purchasing food for the week. I'm thinking of grocery shopping my aisles with the intention of nourishment. 

I'm curious what will come of this. 

For now, though, I will enjoy my YES day! There is a pie in the fridge calling my name and I am going to snuggle my man with every intention of encouraging some heavy petting. :D

I hope you are also saying YES to making delightful plans for yourself as well!

Have a wonderful today and a fabulous new year! 

Hugs, smiles, and love!

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Body Positive - The Way I See It

Sipping coffee with the sun bursting through the window behind me.

 

It is summer where I live. 

As I sit at my desk I'm surrounded by reminders. Behind me cats are shedding and seeking cool tile for sleeping. My love taps on his computer only when necessary and heads outdoors (shirtless when I'm lucky!) to take care of the pool, dig up dirt & reorganize landscaping, climb ladders & fix stuff winter broke.  Out the widow ahead of me I see a river teaming with life. People kayak and canoe, birds hop and fly, fish splash, green growth floats past lazily. On the path and sidewalk people skate, walk, bike, roll, and enjoy all manner of interesting seasonal transportation. 

Everyone is dressed in the summer attire most comfortable to them. 

The weather is hot and humid. Some of us respond by wearing as little as possible, some of us respond by wearing light fabrics over most of our bodies, some of us respond by sweating in sweaters and feeling perfectly good about it. 

I like it all.  

When I was a young girl growing up in Ontario, Canada I rarely wore clothes that allowed skin to show. Long pants, long sleeves, long bulky sweaters were more comfortable to me than shorts and Ts in summer because shorts and Ts showed parts of me I was uncomfortable having seen. I wore t-shirts, yes, but always with a sweater or flannel wrapped around my waist as a safety net. When I went through my phase of wearing skirts and heels I did so wearing panty hose to cover my skin. My blouses were most often sleeved. Regardless of the weather, that was what I felt comfortable wearing. 

Then, I moved to Texas. I had two small children at the time. Little people who would climb all over me, need hugs and holding, need lap sitting and sleep snuggling. The heat in Texas nearly made me mad, and I started to dislike myself as a mom when every time one of my boys wanted to hug me I instinctively pushed them away because it was too hot to handle more things on me. More things touching me. So, I decided to be comfortable wearing t-shirts and shorts. Once that was comfortable suddenly I wanted less. Tinier shirts, shorter shorts. The smaller amount of clothes the better. Any itty bitty breeze that existed I wanted to feel as much of as possible. I wasn't any more comfortable with the look of my skin but I was far more comfortable exposing it in order to feel not so dang hot. After a while, I forgot to be uncomfortable with the look of my skin.

I know you don't care much about me or my evolving fashion sense, the entirety of which has to do with my desire always to be comfortable. But I think it's a nice little peek into how what we and others wear shouldn't be overly judged. We are kinder and our better selves when we're comfortable. So if someone is comfortable wearing something you don't like or understand, maybe don't waste time judging it. In fact, if it is appropriate to do so, make good use of your time by asking questions! What is comfortable about wearing a sweater in the sweltering heat? What feels cozy about not wearing a bra even though we can tell you're not wearing a bra? Get curious in a kind way. We learn so much about ourselves when asking and answering questions. 

I've been thinking lately about the balance between liking the body I'm in while continuing to actively take care of it. Even work on making it better. Sure, I can say it's only because I care about keeping my body healthy but, the truth is, I'm in a new relationship and find myself back in the headspace (one I haven't spent time in since my teen years!) of hoping I look good.

So I thought it would be fun for me to answer these questions I recently came across about working out and body image. While answering these questions for myself, my best friend called and we talked about the answers together. It turns out we have a lot of similar opinions on the issues though the things we choose to do about them are quite different. The conversation was fun! Feel free to peek at these questions yourself, check out my answers and consider your own. Are we surprisingly similar? Wildly different? An interesting mix of the two? 

Having a positive feeling about the body you're in - and there are so many types of bodies! - is a valid part of holistic health. But that doesn't mean shrugging your shoulders to any potential problems and just saying, "Well, I'm body positive so I guess I like it." When we love we pay attention. We notice things and check in. We are brave and do the work of admitting when something isn't okay so we can find a way to fix it. <--- This is all stuff I'm loving about being in love, by the way. :D

So, here are my answers to some questions meant to help me continue to find balance between loving my body and wanting to help it be better.

I hope you'll share some of your thoughts as well! 

The Way I See It:

1. Why do you work out?

I confess, I don't exactly work out. However, I do actively and purposefully include activities into my day that will work out my body. I have never been able to consistently put aside a set amount of time to exercise, I don't enjoy the work out and I don't get that accomplished energetic feeling others talk about afterward. But I do strongly believe that my health is my own responsibility so I do things like dance, roller skate, stretch, and go for walks in order to keep my body looking and feeling healthy.

2. What body image issues are you currently fighting against?

My biggest challenge at the moment is wanting to believe I look sexy. I'm in a fantastic relationship and for the first time in my forty-six years I'm enjoying great sex. I love that. The only down side is I'm noticing this new need to believe I look sexy to my partner. I feel sexy when we're being intimate, but throughout the course of a day I'll catch myself hoping I look sexy. Suddenly I'll notice that my stomach is flabby, there is an overwhelming amount of cellulite on the back of my thighs, and my breasts are like deflated balloons. In a way I feel like a teenager again. Wanting to look good but not believing people when they say I do. Luckily I'm not a teenager so I know better and don't let it hurt or influence me too much. Yet, it is there.

3. Do you think it's possible to love your body if you still want to change something about it?

I absolutely believe that. Because loving our bodies means being willing to see when we need to make changes in order to keep them healthy. We are always evolving and the health needs our bodies change, too. And quite often the clues for changes we need to make will be in how our body looks. I think the trick is keeping an eye on why we want to change something about our bodies. Even if the why is that we want to like the look of it, that's okay. As long as we want to like the look of it for ourselves, and not only for other people. And as long as we don't fall into the "grass is greener" mindset. When I'm struggling to know if I want to change because it's what I want or because it's what society tells me to want, I imagine living alone in the world. Does the cellulite still matter to me then? If the answer is no, I decide it's not worth my worry.

4. Do you think diet and fitness culture is toxic?

I think it can be, yes. Just like any movement or culture, we can get caught up and take it too far and hurt ourselves and people around us. And when there is a whole group of people doing it with us we are at greater risk of not seeing when it isn't healthy for us. Each person will have different reasons for caring about diet and fitness, and finding a healthy balance will look different for each person and family, so I think it's important to keep an eye on yourself and not judge others too harshly in order to avoid toxic culture.

5. What lessons have you learned about body confidence? What would you still like to work on?

Personally, learning to focus on how I feel in my body rather than how I look in my body has made a huge difference in my life. On top of that, practicing not comparing myself to others but rather appreciating the diversity of shapes, sizes, and abilities has given me a great boost. I would, though, like to work on this new wanting to believe I look sexy thing. It's annoying! And it is definitely my job to work on it since my partner has given me all the signs and said in all the ways that I do look sexy to him. I feel embarrassed that I want to believe I look sexy, but I do.

Hmmmm.... maybe working on feeling embarrassed about it is where I can start. It can be hard to figure something out when you're brain is busy being embarrassed. So there it is. I want to believe I look sexy to my partner and I think that means continuing to take care of my body while trusting he's serious when he says I'm sexy to him.

 

So there I have it. A few things I'm sticking with and something to work on. 

I wonder if my love thinks me learning about myself is sexy? tee hee!

Happy summer, friends! 

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: 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