The Kintsukuroi Life ~ Part 1

I grew up with three brothers. For as long as I can remember, I was always the child that had the weird injuries or illnesses. It’s not as if the boys were immune to getting injured or sick, but all their problems were the kind you’d expects, even into adulthood: chicken pox and measles, knocking out a tooth falling from a tree, road rash from crashing after trying to jump their bikes off a homemade ramp, black eyes from boxing in the basement, a broken arm from trying some cool snowboard trick they saw in a video, herniated disc from carrying a 200 lb rucksack (while serving in the military), bruised tailbone from a bad landing after skydiving, twisted ankle from falling off a ladder painting. And then there was me:

• My brother (7) and I (4) decided we were going to be super helpful one day by closing the garage door because dad had just had surgery and mom was busy taking care of both dad and our baby brother. Our driveway started at street level and sloped down to the garage that was fully below ground level. We decided that I would get on my brother’s shoulders and he would stand on the cooler so that I would be high enough to grab the handle. When the cooler shot forward from below my brother’s feet, he fell straight down, and I was thrown up the driveway. I landed on my tush and slid all the way down the driveway to where my brother was. Both of my cheeks had the most amazing road rash and through trial and error my mother discovered that the best way to bandage it all up was with a diaper.
• One beautiful morning at the beginning of summer vacation, I stretched my arms and happened to notice a bump the size of a pingpong ball on my elbow. A fatty lipoma had grown on my elbow overnight.
• On a vacation to Yellowstone National Park a few years after the Yellowstone fires, I slipped while playing on a huge old tree (the trunk seemed as wide as a sidewalk) that had fallen after the fires and I landed my right butt-cheek squarely on the stub of a broken branch! My mother pulled massive 3 inch splinters out of my tush for over an hour and I spent the rest of our two week vacation wearing huge gauze bandages taped over the huge hole in my cheek. They were so big they stuck out the bottom of my shorts and the cute boy in the cabin next to ours stopped talking to me after he saw them.
• When I was in middle school I broke my left ankle right before summer vacation and our class trip to 6-Flags. In my last week of healing that break I somehow managed to break my right foot. I spent the entire summer vacation elevating my feet and using crutches.
• In the June between my sophomore and junior years of high school, half of my vision was suddenly grey. It was my first migraine and it lasted for 6 months.
• While horseback riding after my first year of college, I was thrown and landed badly. I broke three vertebrae in my lower back and tore the muscles on one side of my back from my hip to my shoulder blade.

This is just a small sampling of the plethora of injuries from my youth that highlight my clumsiness and I didn’t even have to get into the random illnesses and infections I had in between them.

As an adult the trend hasn’t changed: my brothers remain mostly healthy and have no diseases while I have been diagnosed with a handful of rare and difficult to treat diseases. I once took the time to research the incidence of each of my diseases in the population and I calculated the likelihood of all of these appearing together in one person on this planet:

I am 1 of 1.2 people on Earth with all of these diseases.

That’s a fairly interesting tidbit. It’s not as though I didn’t know that I’m special. I don’t know how many doctors I have confused with all my diagnoses (you know you’re special when they have to look up the words you tell them). I don’t know how many times I’ve been told I’m the most difficult patient they’ve ever had. I’m weird to them but for me this is normal.

Normal is being at a 10 on the pain scale all the time and having a limited amount of energy to expend in a single day. Normal is being acutely aware of changes in my skin, looking for redness or hotspots, recognizing different rashes and what they will cause systemwide, and using the right cream on the right rash or sore. It is perfectly normal to be obsessed with watching out for signs of clots so that I can be ahead of the game and be ready to address whatever might possibly lie ahead. It is even normal to stump doctor after doctor as far as finding a treatment that works is concerned. My normal is knowing that I could have a stroke today and die, or choosing to have a leg amputated because I decided it was a lost cause and being perfectly happy with my decision. It’s not my normal to hide my disabilities or pretend they don’t exist. My normal is finding humor and happiness despite all the diseases wreaking havoc in my body:

The day my Frankenfoot left me was the day I had my leg amputated. That same day  was also the day I became… a Flamingo! Consequently, both my spirit animal and patronus also changed to flamingos. Imagine that!

If I had a magic wand that could take away all this pain and all these diseases, I wouldn’t use it. I wouldn’t go back either. There are days that are utter hell for me, but I still wouldn’t change a thing. The bad days help me to appreciate all the good things in my life and all the amazing people God has surrounded me with that support me. The good days aren’t just good, they’re spectacular. This is my life and I am who I want to be.

[Stay tuned for Part 2]