Invisible Disabilities and LEGO

11 Jan

I love LEGO®, and LEGO helps me love myself.

Here’s how it happened.

LEGO bricks were my favorite childhood toy. When I was in middle school, they existed in secret. It was the early 90s, and I was getting teenager enough to be listening to popular music on the radio while I hid in my bedroom after school and built my own worlds. Expansive, single-story, open-top mansions using as many bricks as possible was my go-to build. I was too old to be playing with toys still, so I finally stored them away and had to rely solely on my fiction, poetry, and art for creative expression. That gorgeous bin of colorful bricks and imagination ultimately went to my nieces.

Occasionally, in recent years, I’d find myself in the toy section of Target and I’d pick up a $20 or $30 (if I was feeling really wild) kit and take it home and joyfully build it, longing for that piece of plywood propped up on crates in my bedroom and U2’s new hit, “Who’s Gonna Ride Your Wild Horses” rocking out of my boombox.

It was mid-2019, and I had enough disassembled kits to fill a couple of craft boxes: the kind we kept our embroidery floss in when we made friendship bracelets. I love organizing things, and those little cubbies filled with like pieces pleased me. I talked a friend into buying the big TechnicTM car he’d been thinking about, and he came over to play. He built his car and I built a humble little mansion using as many pieces as possible.

Even before we knew that COVID-19 was going to change the world, 2020 started rough for me. My speaking business was having its worst season since it began. I was getting zero interest in the one program I was really wanting to do that spring (my original women’s empowerment program rather than my usual ones on disabilities). I took it personally and I was worried about money. I ultimately decided it was time to substitute teach, but the onboarding was tedious. January brought flare after flare of my fibromyalgia. I was depressed.

I decided to treat myself for Valentine’s Day. I made plans for a weekend at home with favorite snacks and indulgences and guilty-pleasure TV shows. This included splurging on a “big” LEGO kit … an $80 one!!! Check it out here on the LEGO site and enjoy whatever rabbit hole this leads you down.

Around the same time, another friend found out I was having LEGO playdates with our mutual friend and got annoyed not that we were playing together, but that he had no idea all this time. So I got him his own LEGO kit for his birthday. He came over and I surprised him with it, and he put together his little car, complaining the entire time.

Then COVID hit the world, and my business, full force. My speaking gigs were all canceled. It even hit my side hustle; I subbed a day and a half, earning exactly what it’d cost me to do all the clearances and the tuberculosis test and whatnot, when the schools shut down. At that point, we all thought schools and businesses would be back open in the fall, but I only had enough savings to make it through June.

I took the first job I could find, working as a receptionist at a medical practice where the previous receptionist walked out because she didn’t feel safe there, from COVID. It was long days in a high-stress environment, and it was brutal on my fibromyalgia and arthritis.

Two weeks after the shutdowns, I turned 40. Home alone. With a $40 LEGO kit and a jigsaw puzzle.

Then that same friend who was grumpy about his birthday present texted me a picture. It was three LEGO cars that he built at home. “I hate you,” he said, which is his way of saying now he’s addicted to LEGO and I’m to blame. He added, “I finally got glasses.”

That summer, I blew through my savings supplementing the income from the receptionist gig (that wasn’t enough to pay my bills on its own). My LEGO-obsessed friend visited often, bringing me food or arriving with groceries to cook for me. He hardly ever showed up without a little LEGO kit, too, to cheer me up.

By the end of the summer, I was moved out of my craft boxes and into the little drawer units that are made for nuts and bolts. That’s what I used for brick storage as a kid. I was getting it all back now.

I wasn’t alone at all in my endeavors. Now both friends (these are 40-something adults like I) and I had a group text going where we oogled new kits we wanted and shared our builds. We call ourselves the Adult LEGO Club, or ALC. Part of our group texts were about where to actually find kits. Hidden spots and hard-to-find sets. Because we weren’t the only ones who turned to building bricks during lock-down. Everywhere there was a shortage of toilet paper, LEGO kits, jigsaw puzzles, and Worcester sauce. (Someday anthropologists will study this.)

I built the houseship. It’s like a houseboat, but it’s a ship. I made a minifigure me and decided it was my houseship.

Ready to hear how weird I am?

The motley little thing inspired me to start building a little town for it. I perpetually crave the American west, so I started with a saloon. I put it on stilts, because I decided this should be a floating town that I can navigate my houseship through. I decided to add a post-apocalyptic vibe to it.

Now I’m building a whole town. It’s a wild-west-apocalyptic-swamp village with just a smidge of quaint. I named it Stillton, because it’s on stilts, and it’s “still” there after the world ends, and really because it’s built around the town still. It’s got a stillkeeper who lives in a shanty on the roof. It’s a minifig version of my grumpy friend who hated LEGO at first but now has more than any of us. I built minifig versions of my other friends whom I missed, and I placed them around the town.

buildings of Stillton so far, from left: governor’s castle, town still, houseship, saloon, market, hospital, dry goods, jubilee

To whomever I told about this hobby, I said, “I don’t like the way the world is right now, so I’m building my own.” A year later, I started to see LEGO commercials on TV with the slogan, “Rebuild the World.” Exactly.

Things are less terrible in my own world now. My speaking business is back up and running and supporting me. I’ve gotten to travel again. From April 2021 through December 2021 I was gone for work or adventure about 11 weeks total. I took my 13-year-old dog across the country to her 48th contiguous state.

Yet I still LEGO with the same vigor as I did in the darkest of 2020. The truth is, it’s immensely beneficial for me as a disabled person. (My fibromyalgia has physical, cognitive, and mental health symptoms, and I my osteoarthritis affects my back and hands.)

How LEGO Helps My Disabilities

image of arthritic hand / knuckles with LEGO bricks
  1. It helps with my dexterity and hand pain. I learned years ago with my back how important it is to simply keep moving. Building, taking apart, and sorting bricks keeps my arthritic fingers moving, and when I’d expect it to get painful after hours of play, my hands are fine and I do believe it helps!
  2. It helps with my anxiety. Organizing things calms me and gives me a sense of control when I might otherwise be obsessing over what I cannot control. Taking apart and sorting new kits into my little storage drawers is immensely soothing for me. Also, it connects me to my childhood, a time in my life when I didn’t have all the adult responsibilities, and there’s respite just in that.
  3. It takes my mind off the pain. In my speaking programs, in my book, Talking Splat: Communicating About Hidden Disabilities, and even in #Amicasmells: The Movie, my little movie about adventuring with my disabled dog, I talk about the coping trick of “get lost”: getting so caught up in what you’re doing that you can almost forget that pain for a moment or few. Sometimes the pain is too much, but LEGO does often help it feel better.
  4. It energizes me when I’m tired. I’m learning that when my fatigue is bad and I feel like I can’t do anything that I should just try to work on one of my buildings a little and see how it goes. Most often the creativity and joy of it give me a little surge of energy. Sometimes it means I simply play instead of lying in bed, and sometimes it gives me enough energy to then go on and do a chore in my house.
  5. It helps with cognitive function. I often get brain fog with my fibromyalgia, and following directions to build a new kit, sorting and organizing disassembled kits, or envisioning one of my freestyle builds and then executing that vision all help me focus my mind and think more clearly.
  6. It replaces what’s lost. Chronic illness and chronic pain steal from us. It could be forcing us to cancel plans, or it could be “canceling” entire hobbies that we are just unable to do anymore (I can no longer run and am limited in activities that involve sitting, like attending movies and sporting events). Building my new “place” was a great substitute for travel when I was unable in 2020, and ultimately it became a hobby I can do despite pain and fatigue as well as being a social activity I can do with my friends in the comfort and accessibility of my own home.
  7. It reminds me of everything else I can still do. LEGO reminds me that I don’t need to wait around for inspiration to be creative; I just need to start putting pieces together and the creativity will meet me there. LEGO reminds me that when I feel too tired to do something, I should try anyway, and when it’s something I truly enjoy, I’ll most likely find the energy. LEGO helps me along with my true passion–writing–by reminding me how creativity and energy will come as long as I bother to show up. And it doesn’t just remind me of what I can still do despite disability; it reminds me of what I can still do despite the world. I stopped playing with LEGO as a kid because I thought I should, not because it was no longer fun, and it truly is still fun! I have enough restrictions due to my chronic conditions. I’ve decided to not add even more restrictions by caring about what’s “appropriate” or what other people think.

That being said, I don’t even need the above seven excellent reasons to justify playing with my toys. LEGO is joyful! And I’m going to play because I want to.

What is something from your childhood that you “gave up” despite still liking it?

Take it back.

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3 thoughts on “Invisible Disabilities and LEGO

  1. Pingback: Lost in My Dog's Head - Christina Irene

  2. Love this! I am 56, and I picked up the Lego bug when the lockdowns started. I have Ehlers Danlos Syndrome, Cranio-Cervical Instability, Polyneuralgia Neuropathy, among other comorbidities. Legos are my hobby and my therapy!

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