Some of My Most Absurd Rare Disease Mishaps
Last updated: September 2023
Although hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that can come with mine.
Having just turned 48, it's been a long and sometimes bumpy ride with hemophilia. Cruisin' with a bruisin.
But that's my life, and life with a medical condition is just, well, life for me.
3 of my most memorable rare disease episodes
I give you full permission to laugh along as I reflect on a few of my most memorable hemophilia episodes. There's more to chronicle, so leave a comment if you'd like to read more sometime down the road.
And, who knows, maybe a comedic look at my absurd mishaps will give you a more joyous lens from which to look back on your own rare disease hiccups?
1. The Bowling Alley (Summer 1998)
For a long time, bowling was looked down on as a sport. When e-gaming became a thing, there was suddenly respect for the caveman strength needed to sling a boulder around. Never mind the precision required.
But I didn't even receive my wound in the heat of competition on a bowling lane. This would be called "The Bowling Lane" if I did.
No ordinary hug
I arrived to meet my friends at the bowling alley, and as I approached my friends who were waiting for me inside, one of them came charging toward me. Back then, cellphone technology had not reached 20-somethings. If someone was late, you waited and wondered. You wandered to a skill crane machine.
Delighted I'd arrived, one of my friends hugged me. But this was no ordinary hug! They grabbed me under the ribs and lifted me off the ground. "Down, Cleatus!" I gasped. Actually, erase the visual of Cleatus. My friend was diminutive in stature, which made her superhuman strength a surprise.
A late surprise
I didn't mind. In fact, I was actually flattered! I bowled the night away without incident – until I got home. When I used the bathroom, my urine looked like cranberry juice! Yikes!
With hemophilia, you learn something new all the time. A gifted hugger my entire life, I never suspected that my greeting of choice could be a damaging blow outside of a professional wrestling ring.
2. Number Two (Summer 2018)
This one earned its name for soon-to-be-obvious reasons. I'll handle the subject with the utmost class and sensitivity.
Around the same time that I upped my daily blueberry intake by 2000 percent, I noticed a darkening in my stool. Just as I was once unaware of the full power a hug possesses, I also didn't know the special poo-tential of blueberries. Still, after I chilled on the blueberries and things didn't return to normal, I visited my primary care physician. Lab work was ordered and, since I wasn't in any type of significant discomfort, my primary figured the blueberries were the culprit.
Change of plans
Later that evening, as my partner Gwenn and I were getting ready for guests to come over, the phone rang. It was my hematologist. After I hung up, I said to Gwenn, "You might want to tell our friends not to come over." Did I mention that it was also Friday the 13th?
::CUE THE THUNDER AND LIGHTNING::
The labs revealed that I'd lost an estimated 5 pints of blood over 5 days. Even Jason Voorhees would have a problem incurring that level of blood-letting.
A silver lining
But there is a silver lining in the clouds! By this time, I was treating myself. The time freed up at home instead of visits to the hemophilia treatment center led to some browsing on my little-used Twitter account. Randomly, one of the tweets I fired off during my recovery went viral!
::CUE THE CONFETTI::
As a health educator, I loved that a random internal bleed led to a random opportunity to educate strangers about the medical conditions I live – and thrive! – with. Big belated thanks to Jeffrey Wright; he was one of the first big accounts to share my tweet, which really got things going.
3. The Garage (Winter 1981)
Just after kindergarten, my family moved across town to be closer to the elementary school that would host me and my big brother. I was delighted to discover that 2 of my buddies from school lived on the same street. One lived 2 doors down; the other lived directly across the street. I had hemophilia. They had red hair. Collectively, we were a rare breed.
This does not end well...
One day, our activity of choice was climbing on top of a shed to jump off. I loved that. So much fun. Oh, wait, we're doing what now? One of my friends raised the stakes by using the shed to climb on top of the taller garage, just a couple of feet higher. After they each jumped multiple times, they saw I was in a guarded perch position.
"Your turn, Shawn!"
"You can do it, it's easy!"
I succumbed to the peer pressure. SPLAT.
This happened in my friend's backyard. They scrambled to get my parents, who were horrified to learn what we were doing. I'm sure the distance looked higher than it actually was from the kneeling position they were in to get a look at my damaged ankle and knee.
To add insult to injury, our first grade Christmas school play happened soon after, and I had to use crutches because of that jump. I'd effectively Tiny Tim'd myself.
A day I will never forget
Of course, this was all new territory for everyone. For me, my parents and my 2 buddies. From then on, they never pressured me to do anything I didn't feel comfortable doing.
That day was worth the 2 weeks on crutches because I learned so much about my condition and the importance of trusting my intuition. It's also the day my playmates became my best friends for the rest of our elementary years. (And I did more than my fair share of running to get one of their parents over the course of those years!)
Got a mishap that tickles you? Share it in the comments below.
How often do you run out of spoons?