I think I touched on a lot of this in the school stories on Day 5. I was a “bendy” kid, who did a lot of “W” sitting and also a creepier cousin, a kind of “T” sitting (thighs in front of me, and each leg bent 90 degrees out to the side). I remember grossing out schoolmates with my double jointed elbows a lot! I was also pretty clumsy and generally uncoordinated (I couldn’t hit the ball in T-Ball, so I gave up on that sport!). 

I was never huge into sports; what I remember most about childhood is curling up somewhere to read, sitting on the floor in 3 feet in front of the TV, or going swimming when we were at Grandma’s house. One summer I took tennis lessons—those were not great. Another year I played volleyball at school; wow does that hurt!! I also tried playing basketball in middle school, but not only did my team not win any games, we actually scored only one basket the whole season. 

Surprisingly, I actually had great experiences at the dentist as a kid; I don’t know how, but I never had any problems with dental anesthesia until later in high school.

I do remember needing custom orthotics fairly early on for pronating ankles, but aside from clumsiness I don’t remember too many injuries or chronic joint pain before puberty. Around 12 I started getting major sprains and then the kneecap dislocations started up and it was downhill from there. This is a common pattern with hEDS: it’s more common in women, and many women who have it notice a marked increase in hyper mobility symptoms and problems at puberty and some even notice the monthly cycle of problems, so presumably female hormones have an impact on joint laxity (which we already know from pregnancy!).

I did start having postural tachycardia in high school, where I would get faint or dizzy if I stood up “too fast”. I’m sure this contributed to my disinterest in sports—to this day I really hate standing upright!

I wonder what my life would be like if I had known about hEDS as a kid. Would it have spurred me to work harder at PT, and to try to maintain as much muscle strength as I could? Would I have made different choices in life? Or would I have shown the “Grant family stubborn streak” and not done any of that?

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