I have to admit, I spent years after my children were diagnosed unable to explain what ADSLD was and how it affected their bodies. I couldn’t explain because I truly, deeply did not understand. Not only is ADSLD a complex disorder, but the information online is frustrating to wade through. The language used in medical journal articles is dense and unfamiliar and the genetic vocabulary in particular is a jumble of letters that I’ve termed “Alphabet Soup”. Reading these publications is a bit like untangling a knotted necklace, but on this necklace, 2 knots are knotted together. It’s absolutely knots.
“O time, thou must untangle this, not I. It is too hard a knot for me t'untie.”
-Shakespeare's Twelfth Night
In the Spring of 2023, a spark of curiosity caught fire in me when I attempted to create a short video for social media that explained ADSLD. Once again after all that time, I still couldn’t do it! Instead of feeling overwhelmed, I decided to approach my own learning journey the same way I approach learning for the kids, by using the magic of ‘yet.’
“He doesn’t walk yet.”
“She doesn’t talk yet.”
The ‘yet’ leaves the door open to the possibility that someday they might be able to do those things, however unlikely. So that spring I told myself, “I don’t understand yet.” And then I figured out how to understand. Repetition, perseverance, and the wild desire to save my children kept me coming back to these articles until I did begin to understand them. This experience felt strangely familiar.
I’ve been reading Shakespeare for 30 years. As a kid, I was drawn to the huge emotions, the fantastical worlds, and the playful use of language, even though at that age there was a lot I didn’t understand. (Probably best, as much of the humor is…bawdy.) Studying theater in college, I learned that Shakespeare revealed acting tips with his genius use of iambic pentameter to dictate phrasing, pacing, relationship, and emotional life. In essence, Shakespeare’s plays are written in a sort of code and once that code is cracked, a world opens up to the actor.
Reading medical journals gave me the same feeling I had when I first fell in love with the plays of Shakespeare. But in this case, the code I broke was in service to my children. They weren’t clues on how to deliver a line for an audition, they were stories of other patients, symptoms, genetic variants, treatment trials, dead ends, and more knots waiting to be untied. And I’m not sure I would have had the confidence to persist without Shakespeare.
Do I understand everything I read in these journals now? Absolutely not. But I understand enough to ask good questions most of the time. It’s a tremendous gift, and one of many reasons I will never regret my theater arts degree!
For Part 3 of Blame it On Shakespeare, I’d like to decode some of a recent journal article I read that intrigued me. If you are so inclined, you can try your hand at it too! I will link the article here: https://onlinelibrary.wiley.com/doi/full/10.1002/epi4.12837
**Please focus on Section 3.5, titled "Family 4 (p.Y114H, p.R296W; compound heterozygosity)"
Check back next week for Part 3, and let's see how we do!
"O, when she's angry, she is keen and shrewd.
She was a vixen when she went to school,
And though she be but little, she is fierce."
-Shakespeare's A Midsummer Night's Dream
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