Holly Really, Really Loves John

So, being sick at home, or quarantined at home, is probably putting a lot of marriages to the test. If you are one of these people, skip this post, because I will probably piss you off.

My husband John is pretty much the best person I know. Strike the “pretty much”, he is legit the best person I know. Of course, like any other marriage he does little things that occasionally drive me crazy, but that’s just run of the mill differences. He was raised a Republican, I was raised a Democrat. He likes video games for relaxation, I like books. And honestly, none of those things “drive me crazy” more than they occasionally perplex me.

We met on Match.com, like a lot of other people of our generation. And he got me with alliteration; the phrase was “ham-handed”, and instantly I knew that he was something special. This is one of his proudest achievements. He got me, his wife, with alliteration.

He’s a lawyer that started in computer science, you know, like most lawyers, right? He’s a partner in his own firm. He works incredibly hard to be the big bread winner in our family. (Even though he would be just as willing to stay home and take care of our son.) He is patient, he is kind, he is literally all the things that Corinthians said love should be.

He’s also autistic. If you have read my blog before, that’s probably not a surprise. But it sure is for everyone else.

“You don’t look Autistic,” they say.

Anyone who is autistic knows that is not a compliment. (Just ask Autistic Barbie on Instagram. Smart and gorgeous woman, who also happens to be a fantastic advocate. I’m a big fan.)

John and I both discovered our autism after our son was diagnosed when he was about two years old. And honestly, our son’s autistic traits were so “normal” to us that if it hadn’t been for his Apraxia, I don’t think anyone of us would have ever understood why we were so different from everyone else.

(That is probably the only time I will be grateful for my son’s Apraxia. Apraxia is the reason he is non-verbal, at the moment. That deserves a whole other post though, so look for that one on the horizon.)

No, John and I really came together because we were just so perfect for each other. Little did we know that one of the main reasons we were so perfect for each other is that we had mostly the same disorders. Neither of us are ashamed of this, in fact we find it to be kind of amazing. Two Autistic people with ADHD, OCD, and occasional agoraphobia, unwittingly came together and fell in love. The only thing that I have that he doesn’t is the RSD and the Sensory Processing Issues. Most of the time we say that we are neurodiverse and leave it at that. Still, what are the odds?

It makes for a pretty fantastic marriage most of the time. We both prefer to stay in. We each have our own interests (or obsessions if you want to call it that.) We are both extremely empathetic to our son. We are compassionate of each other’s more difficult moments. And we both know the ironic and exquisite pain of wanting more friends, and fearing social engagements at the exact same time.

It’s true, we occasionally run into the problems of two neurodiverse minds rubbing against each other the wrong way, but we have learned to always trust the intent of the other person, and the validity of all feelings. That doesn’t mean we don’t fight. Of course we fight, we’re human. He’s a lawyer for goodness sake. He’s a professional fighter. (Not like kickboxing or anything, we don’t fight like that. Although I maintain that my old cheerleading high kick could still take out his 6’4″ nose. I’m only 5’3″… so that may be bluster.)

Where was I going with this? Oh yes, I am sick. Just like a huge percentage of the world right now, my body is fighting the Coronavirus. It’s not as dire as the poor people on ventilators, my fever is still very mild. The only worrying symptoms I have are some weakness from the the slight oxygen deprivation, and the horrible pain from inflammation hitting all over my body. Both come and go, so I won’t be rushing to the hospital anytime soon. But that also means, I can’t go grocery shopping. I can’t put our son to bed. I can’t hug and kiss either of my boys.

So it still really, really sucks.

Not just for me, but for my husband too. The grocery store gives him a lot of sensory problems, between the lights, the smells, and the people, it just makes him very uncomfortable. He can white knuckle his way through it, but I’ve always been able to tolerate it just a little bit better than him. He’s working from home even though our son is extra clingy because I can’t hug or kiss him. And he’s dealing with me, constantly making sure that I drink water, especially when I get a little loopy from the thinner air I’m living with.

It’s moments like these that you get really thankful for the people in your life. Especially when they step up to the task as well as my husband has. So yes, this is just a public love letter, friends. A declaration of bragging rights. I am so damn grateful for my beautiful family, even with the troubles we face from time to time.

I wouldn’t have it any other way.

Except the corona… the coronavirus really, really sucks. Stay safe everyone!

Sick While Anxious

DEALING WITH TWO ILLNESSES AT ONCE

In the interest of not burying the lead, I believe that I have COVID-19. I say believe because getting tested is not something I am interested in. My symptoms are still relatively mild; I have a big boot of pressure on my chest, a dry cough, and a mild fever. It’s painful, but I can still get air. So I have no interest in leaving the house to endanger vulnerable people just to get a cotton swab shoved into my brain cavity.

But it’s got me thinking about what it’s like to be physically sick when you have an invisible illness at the same time. You see, whenever I get ill, that RSD inner critic starts to eat at me. It calls me a hypochondriac, a drama queen, it savagely whispers, “No one will believe you. No one will care.”

This is, of course, because I spend the majority of my time trying to convince others about those differences that I live with- those “illnesses” that require some occasional accommodation, i.e. ADHD, agoraphobia, autism, OCD, etc.

Now, you might say, but COVID-19 isn’t invisible. You are coughing, you have a fever. You look like shit. (Thanks for that last one.) And still I find myself on my phone, texting my sister about what else it could be. And then the obvious, irritating, always on the edge of my tongue question- Is this just anxiety?

It should be an honest and innocuous question, and it would be, if it weren’t for the ungodly amount of real life illnesses and complications that I have had that were blamed on my anxiety. And I know I am not the only woman to have this problem. Let’s get real. Female hysteria was a “legitimate diagnosis” for a very, very long time. And not that long ago, unfortunately. Ask me about Rosemary Kennedy’s lobotomy if you want a real medical horror story. Or do yourself a favor and read all about it.

TRIGGER WARNING: The article I’ve linked to about Rosemary Kennedy discusses an extreme form of ableism, medical assault during her mother’s labor, medical malpractice, and special needs abuse- abuse, in general. Even if you aren’t sensitive, it will effect you. If you have trauma in any of these areas, you might want to research a different source on Rosemary’s story.

A bright, beautiful woman failed by the medical profession from the time of her birth to her death.

Leaving the gender issue behind, people with diagnosed mental health conditions, including autism, are also being under-treated when it comes to physical health problems. (Judging from the information available about Rosemary Kennedy I think she was most likely autistic, if not intellectually disabled from her traumatic birth. So she had two “conditions” going against her.) In my life alone- where I was mostly only recognized as “anxious while female”- gallstones, pancreatitis, allergic reactions, dermatographia, and chronic infections were all vaguely blamed on my “stress.”

In one stunning moment at the ER, someone had the gall to blame my physical symptoms on my son’s autism diagnosis. I’m a very, very polite/timid person, mostly because of my RSD and anxiety, but I believe my direct quote was, “Are you shitting me?”

Maybe I just said that with my eyes. I’m not entirely sure. I was in a lot of pain.

The point is… and this is pretty much my continual, all-consuming, message… is this:

Demand help. If you are sick, take up the space that is necessary to protect yourself and others. Even if someone wants to downplay your symptoms, it’s on you to not only get help for yourself, but in this time of contagion, it’s on you to protect others. (Not just medical help either. Demand it from your family, your friends, your roommate, whomever. I’m not going to the doctor yet but my husband and I took the time to recognize my symptoms and make a plan if it gets worse.) Anxiety may lie to you and call you dramatic, but a virus will still infect your loved ones, whether they are willing to believe you or not.

A virus does not need outside confirmation to be legitimate, it just is. So in this case, just this one time, be like corona. Rear your ugly head (I told you I look like shit) and demand to be noticed.

It’s the only way we can live.


For interesting information on the effects of COVID-19, check out this New York Times article: What Does Coronavirus Do the the Body?

Agoraphobia, COVID-19, and the Zombie Apocalypse

Like you, I have been watching what is happening to the world from the view window that is my computer screen. And I will admit, it’s making me a bit extra. One facebook thread from a man in the Chicago area made me very worried for all those infected with the virus. (It reminded me a lot of my allergic reaction to macrobid antibiotics.) And an instagram post from a pregnant woman made me feel so compassionate for those experiencing huge life changing experiences at the same time as a global pandemic. And the rationing of medical treatment in Italy… well, let’s just say, that broke my heart.

Last year, when my former therapist was diagnosing me with a plethora of new disorders (I sometimes question these diagnoses because they all seem to be just indicators of my autism, but nonetheless) he also diagnosed me with agoraphobia. I think it was my panic attacks while driving on bridges that was the deciding factor for him. That and perhaps my anxiety in stores? Or taking busses? Or the post office? Oh wow, I just checked out a layman’s definition of agoraphobia- it says, “you fear an actual or anticipated situation, such as using public transportation, being in open or enclosed spaces, standing in line, or being in a crowd.” Well, then. My apologies to Jack. That’s right on target.

So, I have agoraphobia. Which means on any given day, the world outside of my house has always felt incredibly dangerous. Now that it potentially is dangerous, that agoraphobia has gone into overdrive just a bit.

So how do I deal with that?

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Instagram Storied

Curating our lives for mass consumption

From that subtitle, you would think that I don’t like Instagram. Could not be further from the truth. I literally just started Insta and I am hooked. I have posted like 36 images and I still want to do more. I do have one problem though, other than a new digital time-sinkhole I have found myself in… Because of my OCD, I have to post in groups of three, or my profile becomes unsettling. That is my problem with Instagram, but looking at other people’s pages, I wonder if that is the problem for others?

I don’t think it is. In fact, I think I know the problem.

Social media is the neurotypical’s mask, isn’t it?

You might have heard about autistic masking from me or know it from your own experience, but it’s basically the act that autistic people have to put on to be like other neurotypicals. It’s an exhausting practice that often leads to burnout and serious mental health crises. For me, it’s what lead to a late diagnosis and years of mental and physical anguish.

So the question for me is– if an autistic mask leads to anguish for autistic people, does a digital mask hurt neurotypical people?

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Here comes trouble part 2

So, a few weeks ago I went to see Incredibles 2 with my husband. And before the show Holly Hunter, Coach, and Sam Jackson himself appear and say, “We know it’s been a long time since The Incredibles, but these movies take a long time!”

I lean over to my husband and say, “So, are people complaining that animated movies take a long time to make?” John gives me an emphatic, “Yes.” I humph. Which roughly translates to, “People suck.”

Another example, one of my favorite book series, Newsflesh, about bloggers in a post apocalyptic zombie age, says that “waiting doesn’t actually create suspense, it just loses viewers.” I am paraphrasing, but all this comes down to…

I know it’s been a long time since the first part of this post. But something happened…

Continue reading “Here comes trouble part 2”

Pride in Nanette

It’s June 30th. Literally, the last day of Pride month. And I’ve skirted around my own celebration. I haven’t posted anything, here or on any other social media platform. I haven’t raised any flags, and I don’t own a thing in rainbow.  And while I’ve always been loud in my support of the LGBT community,  I have never really been loud about myself and my place in that community. Mostly because, I have so easily been able to pass these last 20 years or so.

But I am a B. I always knew I was a B. There was a really frightening time in high school where I was scared that I was really only an L, pretending to be a B out of fear. (I’m a B, though. A big B, if I’m honest.)

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A Little Kindness

So, I’m home on the weekend from my theatre gig. It’s father’s day and because I understand my husband we aren’t really doing anything except some serious fast food abandon (lots of Popeye’s red bean and rice, the big tub not just the little one.) And while we are eating John mentions that he’s going to have some of our friends over to play board games while I’m gone next week…and my stomach drops.

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And the role of Crazy goes to…

I am in the middle of a relapse.  A sticky, ugly, anxious mood that refuses to quit. And the worst of it is— my timing couldn’t be more off.  I’m starting rehearsals for one of my shows next week. (My theatre consulting goes from simple advice and designs all the way up to director. This year is director.) Which means that the relapse happened right as I was casting more than 60 children and young adults into a Singing-in-the-Rain-esque musical I wrote based on Shakespeare’s Much Ado About Nothing. 

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That kind of crazy

I’ve been trying not to say anything about “gluten.”

I know, I know, gluten is a real word and so there is no need for the air quotes.  But you know what I mean. That person. That person who espouses the evil of one ingredient or another, then borders on a zealot in their need to change what every one else eats.

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About Me, honestly

What about me?

Honestly. I’ve been many things.

I remember meeting a neighbor once. I was about twelve.

(Who am I kidding? I was definitely twelve. I know because social interactions never fade in my memory. No matter how much my awkward introvert heart wants them to fade— they’re solid. Pristine. The truck was blue, the neighbor was wearing plaid. My hair was cut in an unfortunate bob.)

Anyway, I am twelve. (An age I still have not outgrown much twenty years later.) And the neighbor asks me, “So, which one are you?”

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