Unbeknownst to me, that tiny but deceptively bright light would bring out an exhibitionism I didn't know was sitting in my psyche.
What I
should have known is that the tape wouldn't stick to my
velvety skin.
When I say 'velvety skin', I'm not being arrogant. It's a medical descriptor, a term that was used as part of a list of symptoms compiled to diagnose EDS before the criteria changed and became based on a genetic analysis and identification of certain genes.
Alongside 'velvety skin' in the older list of symptoms/criteria, were:
- Easy scarring
- Easy bruising
- Poor healing
- Wounds reopen or widen after stitches are removed
- Frequent subluxations
- Frequent dislocations
- Hypermobile (extra bendy)joints
- Widespread musculoskeletal pain (pain in your meat and joints)
There are others, and you can read all about Ehlers-Danlos Syndrome by clicking here if you want to. For now, let's focus on the Teflon skin, neon tape and that UV...
If the tape had stuck successfully, I would have covered my arms to show my elbows - they've made people gasp and look away since I was in primary school - and made the sort of shapes on pathologically bendy bodies can make.
As it was, my skin is as if made of Teflon and getting things to stick to it has become increasingly problematic over the last 16 or 17 years. Maybe that's because I never needed to stick anything to myself before 2006..?
At the age of 31 in 2006, my left ankle dislocated and I feel, injuring my pelvis. Misdiagnosis and a host of issues with my local NHS Trust mean it is still problematic and can be completely debilitating. My pelvis is one area of my body that has ruled my life and life-choices completely, down to if I can even breathe deeply, for very long time. My muscles from my ribs down wasted drastically after spending nearly a decade in bed.
Unable to get appropriate treatment in my area, it took 14 years for me to get to a point where I could start very basic and gentle exercises to try and regain muscle.
Any muscle.
Any muscle at all.
For the first ten minutes,
we're golden. Everything
stays where it should.
But then it starts peeling,
pulling at my fragile and
improperly made skin.
Indescribable
I won't try to describe to you the amount and level of pain I have endured in order to do even these simple 'workouts'.
Fortunately, cycling had been one form of physical activity I had been able to participate in prior to the pelvic injury, and I'd managed to get my body to a level of fitness that surprised one well-known and respected EDS specialist called Professor Pope.
In one of our consultations after I had been bedbound for four months, I stood, stripped to my underwear under his expert gaze, happily shocked when he finally spoke.
"You're fit. Very fit. I mean, fit for a normal body, never mind an EDS body."
I lost all that fit with the ten years or so I'd spend largely in bed in agony, but I have found ways that work (as much as any sore of movement will ever work in my degenerating form) and I thank my body for letting me move at all, and for remembering how to rebuild muscle of a sort after everything it has been, and is going, through.
One medication that is imperative in getting my pelvis through life is a painkilling patch that is seriously strong and the subject of much controversy in the US. Trying to keep those stuck to my skin is a battle and I end up with layers of plasters stuck and stuck and stuck on top of each other, and the little powerful rectangle.
For the first ten minutes, we're golden. Everything stays where it should. But then it starts unpeeling, pulling at my fragile and improperly made skin. Then, it starts flapping and catching on things.
Guess that is a metaphor for the rest of my life too...
This Teflon Trait was one of great frustration in an Immunology clinic where they wanted to test my system to see how it reacts to things.
After ten minutes of trying to stop the numbered tape buckling up from my skin as it does in the shots on this page, the nurse ran his fingertips up and down my inner-forearm, a frown creasing his forehead.
"No. Nope. You've clearly not put any oils or creams on. I don't understand it. I haven't seen anything like this in 20 years in this clinic."
I shrugged and we agreed that it must be the EDS - although any EDS patient in a large part of Wales will pass through this very same clinic, so I cannot be the only velvety mutant experiencing this problem there too. Surely other Bendies are also Teflon?
Patches, plasters, Immunology allergy testing tape...There was no way the neon stuff was going to stay stuck, was there? That was clear as soon as I tried a strip on my shin. Once the tiny light went on, though, that was it.
The black vest and pants went on, I tried my best to do something interesting on my legs and got down on the floor. Despite the failed experiment, I decided to use the pictures because they're part of the process that we're sharing with you. Hopefully, as we progress, you'll see us improve - and enjoy watching us learning lesson with each shoot.
Lesson learned here?
Use paint.
Use lots of paint.
Not tape.
As for my second selfie shoot?
If nothing else, I'm enjoying the time with my UV light and, when the mood strikes...
...I can't wait for day to give way to the dark
of night.
