Today was a rough day.
Now, I am about to get very real and very raw so if you’re not up to it or if you can’t be kind, please just move along. I don’t need negativity today, not like this.
I have surgery in a couple of days, Wednesday to be exact. Things have moved along pretty quickly. It isn’t anything life threatening, just affects my mobility. I was at the doctor on last Tuesday and he has scheduled my surgery for this Wednesday. Needless to say, the past few days have been a flurry of appointments as I get cleared for the surgery.
A lot of pressure.
If you know me, you know that I am autistic. Yes, I have a doctor’s diagnosis. Lots of anxiety comes with that. It isn’t a conscious thing, just a switch that my brain flips when I am overwhelmed. In some weird, bizarre way, I think it is my brain trying to protect me from overstimulation – at least in part.
Or maybe I just get so overwhelmed that it has to go somewhere.
I need to say this though, God has been dealing with me on this. He is helping me and healing me. My anxiety is not as bad as it used to be, but it can still be very difficult – as you will see here. Years ago He said He would heal me but He wanted me to keep one foot in the autism world because it was my ministry and part of His plan for me.
With that said, here we go.
It doesn’t help that I do not understand people and cannot read them at all. When someone speaks to me I can pick up a little of the tone but mostly I just hear their words.
I want you to understand that my biggest struggle with my “disability,” my autism, is people’s inability or refusal to understand, try to understand, or accept me as an autistic person. They keep trying to cram me into that neurotypical slot and I just don’t fit. I never will.
I try to meet them at least halfway, try to act neurotypical, but it really doesn’t work. Even if I am successful at it for a while it never lasts and I wind up in an autistic meltdown.
Those are never pretty.
That’s what happened today and I am about to bare myself to you here because you NEED TO UNDERSTAND that not everyone is like you! Different people have different points of reference!
I will say it again. YOU NEED TO UNDERSTAND THAT NOT EVERYONE IS LIKE YOU!
And your words can have extremely harmful, lasting effects whether you intend for them to or not.
I have a lot of trouble with masks. It causes severe sensory problems for me and I become extremely disoriented which leads to panic which leads to a terrible meltdown. Add to that it makes it very difficult to breathe and you have a recipe for disaster.
When I wear a mask, my blood pressure goes up – way up. This has been documented by more than one doctor. When the mask comes off, it goes back down. Wearing a mask LITERALLY puts me into a hypertensive crisis! Blood pressure that high can cause a stroke as well as organ damage.
THAT is what I put myself at risk for every single time I put on a mask.
COVID is a maybe, maybe not issue. I might get it, I might not. And if I got it I could have no symptoms or it could be severe. It could be nothing or it could be everything.
When I put on a mask, there is a 100% certainty that no matter what I do to try to calm myself I am going to experience the disorientation, the panic, the severe anxiety, and my blood pressure is going to rise to very dangerous levels. Every single time I put on a mask I am flirting with the very real possibility that I will have a stroke.
I know this for a fact. Every. Single. Time.
To me, that makes my wearing a mask much more serious and harmful than not wearing one. You cannot make a blanket requirement without taking into account people with special needs whose medical conditions could make it riskier for them to wear a mask than not to wear one.
Some people could be put in life threatening situations my wearing a mask.
I am one of those people and the one size fits all mask mandate or requirement or whatever puts my life at risk every time I am forced to comply.
What you have to understand is that there are exceptions to every rule.
I am that exception. I am not alone. There are others.
If you go to the CDC website, they DO NOT advocate EVERYONE wearing a mask. They list several issues that exempt a person from wearing a mask. Go ahead, visit their site and scroll down the WHO SHOULD NOT WEAR A MASK.
Many of those issues are like mine. The risks associated with wearing a mask are much more significant than not wearing one.
Wearing a mask can kill me and if I continue to expose myself to it chances are it will. That is just the reality of my situation.
And I am sorry, your fear is not worth my life. It just isn’t. If you see me somewhere without my mask and that scares you, stay away from me. It is just that simple.
Why am I saying all of this?
Well, today was a rough day. I had my final pre-op appointment this morning. I got there on time, was ready and planned to get in and out quickly to minimize my mask time (It is policy there that everyone has to wear a mask – I had no choice).I had explained my problem with masks to my doctor but I am not sure she fully understood.
She understands now.
The nurse was doing the regular questions and vitals. She took my blood pressure. My husband and I had explained to her the problem I have with the mask and told her that my BP would likely be elevated but it would return to normal after I got the mask off.
She took my BP and told me that I would have to get it lower or they would not do surgery.
I explained again about the mask and how it would go down once I could take the mask off.
Her reply was, “Well, you are going to have to get it down because they won’t do your surgery if it’s high.
“Now, my surgery is in two days so it isn’t like I can go on blood pressure meds for this – I don’t have high blood pressure anyway.
The way she was talking to me it felt like she was blaming me for my mask issue. I felt like she didn’t believe me or thought I could control it. I might be wrong but that is how she made me feel.
I started to explain again (Remember, autism – I am still trying to reason to help her understand what is going on with me) and she kept arguing about me getting control of my blood pressure.
It was so frustrating because I felt like she wasn’t hearing me.
Then she said, “If you don’t like wearing a mask then you need to stay at home.
“Now, in my autistic brain, I started thinking about being at the doctor. I HAVE to be here. Does she think I should have stayed home and not come to the doctor’s office because of my mask phobia? Does she think I should not be here? Is she telling me that if I can’t wear a mask then I should not be at the doctor’s office?
I don’t know what she meant, but it sounded really bad to me. It sounded like she wanted me to go away.
That’s when the meltdown started. I said, “Please stop talking to me.
“And I told my husband that I wanted to go home. He said he understood but I had not seen the doctor yet.
She was quiet for a minute, typing something in the computer, then she said, “I have to ask you these questions. It’s my job.
“She did not say it in a kind, soft way. She said it in a hard, clipped way. It sounded like she was angry.
I don’t know if she was or not, but again, I can only look at the world through my own lens. I can only process information with the equipment that I have and that is limited by the autism. I don’t what if she was angry or offended but she sounded like it to me.
It was too much. Everything was just too much. It felt like the room closed in on me and I had this overwhelming urge to run away, to get away. But at the same time I knew I needed to see the doctor so I was trying to stay.
Then I knew I was about to have a severe panic attack. I knew I couldn’t run outside because that was too far and too many doors to go through.
I asked where is the bathroom? She gave me verbal directions. My verbal processing is already pretty bad but when I am in a meltdown, it is almost nonexistent.
I was asking where the bathroom was and no one was directing me. Then another nurse pointed and I ran in there, closed the door and hyperventilated for several minutes. When I could get some breaths in I started trying to slow my breathing so I could calm down.
When the nurse had taken my BP it has been 190/98 which is high but it was the result of the stress from the mask. When I was having the panic attack, I am sure it was much higher.
My husband knows how to handle me so he left me alone for a few minutes, then tapped on the door and asked if I was OK.
Of course I said NO.
But I came out and he helped me back to the room. My doctor came in and talked to me about my BP. After seeing a full blown autistic meltdown I am pretty sure she has a different perspective of sensory processing disorder and autism.
People can hear about it or read about it but until you live it you can’t really understand. She didn’t experience it but she witnessed it and in that respect I guess it was a good thing because she has a much better idea of what I deal with and how my autism affects me.
The nurse did not speak another word to me.
My doctor seemed very compassionate. People react differently and she seemed like she didn’t realize until right then.
I can be sort of normal or at least act like it but that doesn’t mean that I am.
It just means I can act like it for a while. But no one can see my insides and what is going on in there. On the outside I might appear neurotypical but on the inside I am still autistic and don’t understand a lot of the interactions I am having.
I do that for the other person’s comfort, not my own because it is NOT comfortable. It is hard and painful and upsetting.
Today was traumatic and it is taking a very long time for me to return to normal. But I wanted to share this with you because when you see people in the stores who don’t have on a mask, when you meet someone who doesn’t act like you think they should, please be kind.
You don’t know their story. You haven’t walked in their shoes.
You can’t see their insides.
Please, please save your judgmental or hateful comments and keep them to yourself.
One day you could be in their shoes and I am sure you would want others to treat you with the same respect I am asking from you now.
Today was very traumatic for me but it didn’t have to be.
Please, take more time to try to understand than you do to try to be right.