Can we meme our way out of this?

autism, COVID-19, pandemic, quarantine, special needs parenting, Uncategorized

Platitudes are like dick pics. Searching for which cliche fits best in response to someone’s expression of anguish is like searching the garbage for a used condom. Undignified, pointless, and disgusting.

It’ll get better.

Keep your chin up.

Enjoy your time together…

This too shall pass.

They grow up so fast…

We’re all in this together.

We’ve all used these words. We’ve all felt that hopeless moment of trying to cheer up someone and grasping at giving reassurance but just coming up with feeble banalities.

I’m not quoting a study or going to make a reference to a famous pious oracle or analyze the success rate of platitudes for you. I feel fairly confident in asserting that they’re as wanted as unsolicited dick pics. There’s the danger of being redundant when saying “unsolicited dick pics” but I thought I would at least specify for those of you that might feel judged by requesting them yourselves. No judgment. I am guilty of oversharing about my kids and posting pics of random foliage and food so whom am I to judge, mea culpa.

So when you, like myself, find yourself barely hanging onto your sanity while trying to survive this pandemic and being at home nonstop with your offspring you might bristle to the point of looking for a pointy object or hitting the “unfriend” option when someone says, “You’re not alone,” or, “Hang in there.” Only to be less cringe-worthy than, “It could be worse,” or, “Have you ever tried a gratitude journal?”

No, “Janice”, I haven’t. You know why?! Because it’s pretty difficult to find the bright side when you’re back to potty training your six-year-old who is regressing or getting woken every three hours by the other child who is having night terrors and screaming in her sleep. And NO I don’t let them watch the news and YES I do explain the bare facts without the grisly drama of the reality of our situation.

This same person sent me articles about accepting my children’s autism because clearly I had not done so if I was getting frustrated with my circumstances…don’t mind me while I go scream into a pillow that’s not embroidered with mottos or, frankly, clean.

Guess what, “Janice”?! I am ALONE unless you’re coming here at 3 am to help me put the kids back to bed and come up with “plans” for the day that will then be rebelled against because “we don’t wanna” is the refrain. I don’t need a self-help article I need some actual %&#@ing HELP. Like most in my situation, we don’t need the judgement of someone who has no possible way of relating to our life or experiences because receiving your opinion is about as wanted as a dick pic.

(By the way, “Karen” is the popular name to use when being derisive nowadays but I know at least two Karen’s that I love and admire, including my mother, so I go with “Janice” thanks to John Oliver so – blame him!)

Receiving a platitude in response to an attempt to reach out for connection in an act of vulnerability is like allowing someone to hold your newborn baby and that person sneezing in the baby’s face. All of us are seeking support and love from those we care about in a stressful era yet we’re all reacting and processing current events in our own way. Some, like myself, are siloed in my existence of self-quarantine out of caution, not preference. It’s painful for my kids when we see people gathering in playgrounds or parks and we’re not able to join them because we’re immunocompromised. 

Currently, it’s not safe, it’s not allowed by the local government, yet people are still doing it and it’s extending how long we have to eventually stay on lockdown because that’s where the spread of the virus is originating, “community spread”. Not only is it mentally painful for anyone to be cooped up this long (going on four months now) it is horrifically unfair of people to not grasp that their individual decision to not follow health cautions is directly impacting others’ mental and physical health. That their need for convenience and comfort by not wearing a mask or staying home is threatening the health of countless people and prolonging the suffering of others.

Much of my daily life before quarantine looks not all that unlike my life now except the difference is the effect it’s had on my kids’ mental health and the sudden lack of support from anyone. Every single support worker or therapist disappeared from our children’s lives until just recently. Video chats are the nemesis of people on the spectrum. It’s a hateful cocktail of direct eye contact, forced small talk, and being trapped in a conversation. I might as well douse them in honey and pour ants on them. It would be kinder.

Then there’s the fun of attempting to interact with the outside world. Oh joy! We wear masks and keep our distance. Our neighborhood? Not so much! We honestly played a game of “mask bingo” and I gave them a sticker every time we spotted someone wearing a mask when they passed our house. It took them three hours to fill the card. We see at least twenty people go by in an hour. Do the math, I’ll wait…

Our state is supposed to be just coming out of a lockdown despite the numbers doubling and tripling every day. Are the numbers reliable? Who knows. Google CDC, WHO, or your state health authority. There is no reliable testing, no reliable tracking in Oregon, and testing is not readily available for most people especially those that lack transportation or have obstacles to obtaining medical care. Like, say for instance, being autistic.

“Maybe if you found some “me” time…”

I appreciate a crass or snarky meme as much as the next girl but if I get one more flippant “hang in there” from a neighborly stranger passing by without a mask on or keeping their distance I might just start creating chalk art of penises with big droopy balls to enforce the six feet of distance and draw masks on them for good measure.

Many of us are struggling. Social media and memes don’t amount to a hug or a trained professional being supportive of our family’s medical or mental health needs but it is amazing what a physically distanced chat or an unexpected phone call from an old friend can make. I’m trying to remind myself to do that for others every day and remind myself that I’m giving my kids a healthy childhood and that is immeasurable given they’re living through a pandemic. There is no graceful or perfect way to survive a plague other than that, to survive. Every day that you’re healthy and you’ve kept your kids COVID free is a good day. Celebrate when you can if even just to have something to look forward to. I know I do. I woke up today because I planned cake for breakfast. Suck on that “Janice”.

“Keep it up, you’re doing great…”

“It won’t last forever…”

I really hope I’m wrong and the seriousness of this virus is being exaggerated but I’m not willing to gamble my kids’ lives over a conspiracy theory or my need for social interaction by going to a party or a bar. Just in case you need to hear this cliche:

“Wear a mask. Wash your hands. Stay home if you can.”

Support our health care workers and donate. Show first-line workers of every type dealing with the general public the decency and respect they deserve. Be cautious and tip well for &#@! sake.

A huge thank you to everyone that risked their lives protesting police injustice and systemic racism. Those of us that can’t physically be there support you and hear you.

I really hope we’re not alone in our struggles because I hope all of you are safe and survive this pandemic with your lives and sanity intact.

The validity of pain.

chronic pain, EDS, Ehlers Danlos, lymphedema, POTS, PTSD, Uncategorized

“You look well, I thought you said you were sick?”
“So when will you get better? How long does this last?”
“Chin up. Don’t let it get you down.”
“Maybe if you just exercised more…”

How do you explain to others what it means to have chronic pain?

That I have back up plans for my bad days when I can’t walk. That a smile on my face doesn’t equate a lack of pain in my body. That my clothing size isn’t indicative of my longevity. That my outer appearance has no bearing on my internal health.

I find myself trying to explain to others my situation looking for understanding or acceptance yet feeling as if I’m having to justify my diagnosis to them. It feels at times that I’m marked with labels that do little to solve or console the ache that doesn’t leave yet at least confirm for me that it’s not just my imagination.

EDS, PCOS, lymphedema, POTS, PTSD. I’m an abundant alphabet of theories confirmed and devoid of solutions. Like the remnants of an oil spill lapping up on a coastline. The damage might visibly dissipate but the water is never untouched again. The toxicity only settles down to the rocks and becomes part of the body of water despite all the good intentions and valiant attempts of those to save everyone from the contamination. Yet, in this case, the source was written into my DNA and there’s no escaping it or the pain. The true damage are the biting remarks and slights not my conditions.

I can smile, I can force myself to do activities, but it’s not as if a sign lights up above my head to warn others that I’m on the brink of tears or exhaustion with the effort. So, to the casual observer, I seem fine and it’s assumed that there’s nothing “wrong” with me. That I should be able-bodied if only I put my mind to it. As if to be anything but able-bodied is a character flaw and under my control. Then again, what exactly is “able-bodied” or “able”? Don’t we all have different abilities? These are not attributes or flaws merely aspects of ourselves.

There’s a designated disability parking space for our home. I see the irony to some that I accept the resources for being disabled yet take issue with the denotation yet I’m not prideful enough to be foolish as to turn down help that I need. I was relieved to have the help but humbled at the reality that I needed the help. I would be lying if I said it didn’t scare me that I need to rely on others for help with my children and that there are days where I’m in so much pain I can’t walk. No one plans for these things yet changes in health are part of life. What I hadn’t anticipated was the anger from others.

The random neighbor walking by, stopping and staring at my car, staring up at our house, and back again at my car shaking their head. Me spotting them from my desk, crying in shame and frustration, hurt that someone I thought was a friend was secretly judging me. When I saw them a week later they joked, “Hey, nice job scoring the parking spot.” With a chuckle and a smirk. Without a hint of sympathy. Only smug indignation of feeling justified in criticizing me. “We need the spot…I need the spot. Me and the kids.”
“Oh, yeah. Your husband mentioned they’re on “the spectrum”…” with a roll of his eyes.

I’d like to say I argued with him. Railed at him for his prejudice and insensitivity but I did not. I’ve tired of having the same debate continually with others and merely wish to not battle any longer. The fight has gone out of me as of late.

It feels unreasonable to expect others to understand or want to be informed of my conditions. Instead, I answer what is asked and try to be patient with the pain within and that which I receive from the carefree obliviousness of those that can’t relate. We all will face a health crisis some day of our own, or someone we love, and I hope we all remember that and treat others like myself with compassion.

Shadows and the sweet

autism, chronic pain, death, Ehlers Danlos, motherhood, parenting, special needs, special needs parenting, Uncategorized

I was numb. The fear of what was possible and unknown was twisting inside of me and clamping down on me.

It was humid, raining, and I felt like jumping out of my skin and flying over all of the cars ahead of me and fast enough to leave everything I had heard behind me. Traffic crawled along but I simply just stared at the tail lights ahead of me with resignation and accelerated with the mass of vehicles and decelerated without much notice. I had just gotten off the phone with my husband and the doctor appointment was behind me but so much lay ahead of me.

For the last few years I suspected that I had Ehlers Danlos (I’ll wait while you Google that) but getting a diagnosis is a struggle not all that unlike the process we went through for our children being diagnosed with autism. I didn’t worry as much as wonder since I had so many other concerns that absorbed my attention (see “children”). Yet as the stress of life built up over these past two years and then sped up to a frenzy in the last few months something shifted. I was in pain. Not just with certain activities or phases. It was there when I tried to sleep. It was waiting for me when I woke.

Nothing was comfortable anymore. Sitting, laying down, nothing gave me relief from aching. I didn’t want to take pills to stave it off and be living in a fog. A dangerous proposition if you’re meant to be running after children but I found I couldn’t keep up. Not just from exhaustion but physically my body wasn’t responding when I needed it to.

I stared at the Hyundai in front of me. The man was gesturing like an enraged mime at the chaos around him. As if silent reasoning was possible with this quagmire of metal boxes. The car across from him held up their middle finger. It was an elderly lady with a multitude of bumper stickers. It shook me out of my haze for a moment and I laughed. It was that last defense that fell away across the surface of my bubble and it burst. My laughter turned to tears and I wept in the privacy of my car as I helplessly sat in traffic.

Because this was my life now. Helpless to the current of traffic as much as I was to the outcome of further testing. It had been written in my DNA and nothing I’d done or could do would change the facts. I simply had to face the pragmatic logistics of booking the appointments for further testing and wait. Waiting was more of a feeling than an action in my opinion and I found it most infuriating when it was to be done in unpleasant conditions (see “adolescence”).

I didn’t want to share my news with the kids until I knew everything with certainty yet they both had a knack for eavesdropping and were keenly sneaky when there was something behind withheld from them. As careful as I thought I was being, making phone calls when they weren’t around me. They noticed that I was in pain, they were confused as to why our walks together had become more rare, and they wanted to know why they couldn’t bounce on my lap.

It was a few days later, early in the evening but I struggled to keep my eyes open so I waited until I had the kids to bed and then went to bed myself. Not long after I heard the soft step of Leonora coming down the hall. She looked fearful and concerned. I pulled the covers back for her and held her. Her face was upturned to the ceiling as she laid her head on my chest but I could tell she was crying.

“I can’t stop thinking about death.”

She sighed and exhaled so deeply I could tell that it was a huge relief for her to speak the words. I squeezed her tight and stroked her hair. These are the moments that parents dread. It’s like seeing your child falling in slow motion yet this is our emotional well-being that is in free fall and you must catch them or risk permanent injury.

“There’s nothing to fear. Death is part of life and we can’t change that… It’s a surprise awaiting all of us, the last great adventure, and to fear it is natural but it’s pointless to worry. Every time we cut a flower we’re watching birth, life, and death all in one vase. Life is beautiful but everything ends, the good and the bad.”

She breathed slowly and calmed. I could feel her becoming heavier as she relaxed and thought about my words. I wondered how she was interpreting them. It occurred to me that she loves my stories and that maybe I could explain it with one.

“Did I ever tell you about Brandon?” She shook her head and I continued, “He was a classmate of mine. We were on school break and during the holiday he had an accident and died suddenly.”

I let my words sink in for a moment before resuming. I left out that it was from riding his bike into the street. Or that his mother and brother had to witness the event. All of those details were too painful to recount and would only heighten her anxiety.

All of us in his class and in the school were in shock when we heard the news and then had to go back to school the next day and behave normally. It was surreally horrific. The bus ride to school that day was silent. We filed into class and sat at our seats robotically, waiting for someone to tell us how to behave, waiting for an adult to make all of this feel ok again.

Mr. West, Richard West (“Dick” for short and he had no shame in informing people) was my fifth grade teacher and the first truly kind man I had ever met. He showed me that men could be trusted and were redeemable. I was his favorite student. Me?! The forgotten, bullied, silent girl who the teachers pushed aside or ridiculed right along with the bullies in my clothes that were 20 years out of date and my hairdo that belonged in the journals of emotional torture all the world over. Mr. West was one of the shining lights in my childhood.

“I had a teacher, Mr. West, he was the kindest man I’ve ever met. He got up in front of the class that next day, with tears in his eyes, and told us this: “Brandon will be missed. He was a good boy and all of us are in shock at what happened and grieving. Death is part of life. Brandon will always be with us as long as you remember him. That’s where we go when we pass on. We always live on in people’s memories of us. To be truly loved is to be remembered.”

And I agree with him, when we die we don’t disappear we simply continue on in the memories of those we’ve loved and those who have loved us. Like Mary Poppins said, “Nothing’s gone forever, Only out of place.” And I believe that too. I’ll always love you, I’ll always be with you, and I’ll always be in your memories.”

Then I told her the lie that all parents tell their children. It might be a different translation but the sentiment is the same, “But that’s nothing for you to worry about because I intend to be around for a long time.”

She hugged me and we laid there for awhile simply thinking our own thoughts. Hers unspoken and mine ruminating over the uncertainties of life and the retrospective judgment of our actions, particularly parents. Whether it’s us raking ourselves over the coals or the hurt expression we fear seeing on our child’s face and knowing we inspired its appearance.

Eventually I offered to help her back to her bed and laid down next to her, singing and stroking her hair, until she fell asleep. As I left the room, I looked over at Owen’s sleeping form and saw his feet ajar from the blanket and his head dramatically craned towards his stuffed owl. I smiled, tucked him back in, and choked on a laugh as he harrumphed in his sleep and folded his bottom into the air.

I can only hope that things turn out right and that if they don’t, my children find me where the lost things go.