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!

Sensory Meltdown

HOW I DEAL WITH LIVING IN A WORLD THAT IS JUST TOO MUCH

Hyperosmia, misophonia, and photophobia… No, photophobia is not being afraid of having your picture taken. That is technically Scopophobia, or the fear of being seen. Like most people that have had problems with their self image in the past, I can understand that one too. But that’s not what this is about.

Hyperosmia, misophonia, and photophobia.. (oh my!) …are respective sensitives to smell, noise, and light. Or in the world of some autistic people, just having a nose, ears, and eyes. These sensitivities can trigger stress, or be the result of stress, whatever makes it happen, it is something that we deal with every day.

So how do I do it? It requires tools, accommodations, and occasionally, trickery, but I do it everyday.

Here’s how…

So I wrote this piece a few weeks or so ago, at the beginning of quarantine. And while everything that I was going to tell you was true.. what I am about to tell you is also true… And it’s happening now…

Hyperosmia, misophonia, and photophobia, collectively, really just mean that you are very sensitive to the world around you. And at times of stress, it can also mean that your senses will turn on you.

What’s more stressful than a global pandemic where millions might die? Apparently, living with my sweet little family.

The little prince is home from his school. He doesn’t understand why his entire routine is just suddenly gone and he is acting up because of it. We’re also trying to potty train, something that is difficult with neurotypical children, let alone autistic children affected by large and unknowable current events.

Typically, I use the time he is at school to clean up, reset my house. Deal with all the mayhem that he inflicted the night before. Find where he hid the can opener this time, pick up all the shirts that he threw on the floor to steal the hangers from- put away all the silverware that he took from the LOCKED drawers around 3 am while we were sleeping.

This may sound like I am a neat freak. I’m really not. I’ve lived most of my life as a messy person. But as I’ve gotten older and my responsibilities have grown larger, my need to control my environment has multiplied exponentially.

So, as you can imagine, with quarantine, I haven’t been able to control my environment. The can opener is lost. All the shirts are either dirty or on the floor, hangers or not. And the silverware… my god, most of the silverware is with the dirty dishes. Reeking in the sink.

Then I also happen to be married to an autistic man, who has trouble with any kind of change to his routine, or his needs. He is not selfish. He just has trouble with this. Like millions of other people, let alone autistic people, he has trouble adjusting. So I can’t ask him to pick up the slack as I might be able to in a typical marriage.

And now…. Now I am sick with the virus. It’s not as deadly a case as it has been for others, but it is extremely painful at times, not to mention isolating.

So as you can imagine, my world and my mind are melting down.

What did I do to stop it?

Well, first I tried having a session with my online counselor that I see through betterhelp.com. I have received so much help from this online modality of therapy. This particular counselor has helped me a lot with the practical side of regulating my emotions. BUT when it comes to autistic traits, he just wasn’t helping. He kept harping on the fact that I needed to be more assertive with my husband. Anyone who is autistic will tell you that someone being more “assertive” with you is not going to be some kind of wake up call. It’s going to be a trigger for more stress. I tried to follow his advice, but it only resulted in more emotional turmoil, for both me and my family. (I want to say something more about therapy here, but that deserves a whole different post. So stay tuned for that.)

Anyway, that didn’t work. So I flipped out. Not at anyone per say, no, I just went to my computer- cried really hard- and then started writing. Stream of consciousness, painful, emotionally volatile stuff that I blamed on my counselor, my husband, my autism, EVERYTHING. I typed so hard that I damaged my keyboard. Then, when I was done, I erased it.

This is the literal definition of catharsis. I had to get those feelings out or I was going to lose it on someone I cared about, most likely my husband, if not myself. And you can lose it on yourself. You can do a lot of damage to yourself.

I watched some ASMR to cool down, my favorite GIBI Affirmation video. And then I got some sleep. This helped.

Then, as I said before, I started to get sick. While I am 99% positive this is COVID-19, my doctor asked me NOT to come in for a test because of the rationing of medical interventions and supplies. He told me it sounded like it was potentially corona and to call immediately if it got worse. This was not great when it comes to my need for rules and certainty, but my enormous want to be helpful i.e. not infect other people, satiated the not knowing. At least enough to follow my doctor’s orders. Orders are close enough to rules to shore up the uncertainty.

But being sick didn’t help my environmental concerns. The dishes and the garbage still smell, the can opener is still missing, and the ice maker is making a horrible, horrible sound.

So, seriously, what do I do now? My environment is only getting worse, so my sensory issues are only getting worse. What do I do?

Part of me had to shut down. The part that can’t handle sounds and smells, that had to shut down a bit. The way I see it, I’m practicing desensitization by letting things go. If it gets too bad, I do use some of my tools and tricks to get through it, like lighting candles or listening to ASMR. But it’s important to try and stretch your abilities from time to time (that’s a tip from Temple Grandin by the way.)

And my husband did have to step in, because when it really matters, he too can overcome his issues to help the ones he loves. It’s hard for him, and he has experienced some burnout from the near constant demands of his wife and our extra clingy kiddo.

But we’re making it through.

Honestly, as soon as I am better, I am going to do my best to reset this house, even under the restraints of quarantine. And I will use every trick at my disposal to get there, until then, I’m letting it go. And getting some rest.

That’s the most important thing I can tell you- just let go. Occasionally, the world is going to be too much and you won’t be able to control it. All you can control is how you respond to it. Use all your accommodations and tricks to mitigate it the best you can…

…then let go.

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?

speaking of zombies…

Just after writing my epic top ten list of zombie novels, Max Brooks, author of World War Z (#5), went on NPR to talk about how the panic surrounding COVID-19 could have been prevented. It’s very interesting, check it out!

all of this could have been prevented” Author Max Brooks on Covid-19

WOAH, woah, woah- in looking this article up I have discovered something that I should have already known. Max Brooks is THE Mel Brooks’ son. THE Mel Brooks. Woah. My mind is disproportionately blown considering the state of the world.

They did a fun little PSA on Twitter about COVID-19. Check it out…

Alright guys, you heard it from the guy that literally wrote the book about the end of the world. #DontBeASpreader


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?

Continue reading “Agoraphobia, COVID-19, and the Zombie Apocalypse”