Perhaps some of you may not have thought about it, but some of you may have given your imaginations brief rein to fill in the largely unwritten subtext of last week’s post. What does it feel like to stay awake entirely for one night and for parts of multiple nights after that holding and gently keeping a kiddo with a rare form of gigantism- a kiddo that needed five people to hold him down in the ER to get the bandage on in the first place- from ripping off said bandage before the wound can heal enough to do without it? I will tell you this much, my husband was working nights at a local hospital and going to graduate school during the day at the time, so it was by and large all me. And I have an entire catalog of these kinds of moments, but I’ll never really fill in those blanks for you…those memories are locked away, “behind the mask I wear.”

While this is the time of year so many of us focus on wearing a mask, I think perhaps, really, we are all more often holding a less noticeable one up between us and the world. There is an essay written by Elsa Sjunneson in Disability Visibility that I absolutely love titled “How to Make a Paper Crane from Rage.” I think some parents of disabled loved ones might also relate to her writings, because it often feels like we are being told by the community around us that there is only so much of the feelings about our experiences that can be palatable and thus shown. So as Elsa said, “I have learned to suppress, to fold, to disappear. When I fold down…I fold down myself. I make myself smaller, prettier, easier to consume.” And I tuck it all away, “behind the mask I wear.”

For me, there’s no escaping that even after all of that folding, I still fantasize about what life was like before the pandemic. Almost everything seems harder right now. And the demands of providing for the safest possible working environment for all of us are intense. Sometimes it’s like all I can hear in my head is Axl’s voice crooning “Don’t you cry tonight…”except I’m singing the entire song to another part of myself. Some nights I loose the battle to keep my cheeks dry, and the past seven years have been the weepiest years of my life by far. Living through these experiences, it’s hard not to feel broken sometimes, no matter what kind of mask you put on over current and past events.

The isolation. The sense of abandonment. The fears. The struggles. And there’s a whole other part of me that is equally devoted to everything for our daughter, though out of respect for her wishes I only talk about things she’s given me permission to on our blog. But I know exactly where all of that is hidden, somewhere “behind the mask I wear.”

Sometimes I have to turn away from it all and instead of, for example, shaking my fist at Vans this week for discontinuing the gluten-free chocolate chip bars that Tony has been loving and counting on as a near daily staple for years, I have to focus on something more positive. That, for example, our little man actually tried and ate the first two types of bars I got to try with him as possible replacements. (Take that, Vans!) This might seem like a given to many parents, but with a kiddo who is level 3 Autistic, or has an FASD, a complete lack of flexibility with these types of things is more often then not what parents and caregivers encounter. Avoiding a hunger strike is actually a major thing when beloved items are discontinued for our families. And as small a thing at it might seem to some, knowing how big a deal it would be for Tony to have his Vans bars disappear definitely had me in tears when I found out, but I’d rather magnify that he’s willing to try other things at this time.

Or that we had a successful return to public therapy this past week. That someone who lives near us stopped to offer us a ride home when stray dogs were circling Tony during community safety because she noticed that he was frightened- so rare an offer of that kind of help. That a brand I love accidentally sent me a second of the same eye shadow palette I ordered and told me to keep it when I contacted them about it.

I need to create as much as I need to serve. Both are integral to any ability I have to find joy and meaning in life. My time right now is so restricted that my ability to do something brief, different, and colorful every day on my face has been a lifesaver of emotional nourishment. If one must wear a mask, at least let it be one that brings them some manner of satisfaction. And, I loved being able to pass the kindness and love on by sharing my good fortune and the second palette with someone who didn’t have it.

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When I was in fourth grade, I told my mom that I wanted to start wearing makeup. I was given a rather lengthy lecture on the evils of makeup and hair spray in general. She wasn’t religious, she just thought that anything related to altering a person’s appearance was completely frivolous and she was rather disappointed that I had any interest in such things- though she did allow me to start using both makeup and hairspray when I wanted to.

You know, I didn’t care then and I don’t care now what people think about what I want to paint on my face. Life is short. Perhaps such things could be seen as shallow, but I agree with Sam Berns when he said in his TEDx talk that he tries not to focus on what he can’t do, but rather what he can. So if I must disappear “behind the mask I wear,” creating ones I love has helped me hold myself together when nothing else was.

I have included a link to Sam’s TEDx below, as well as another talk on happiness that I really enjoyed.

“My Philosophy for a happy life,” by Sam Berns

“Happiness is all in your mind,” by Gen Kelsang Nyema