Yesterday was my birthday. Yes, another year older, another milestone reached. It was the big 4-0 this time, and it got me to thinking. Why is forty such a big deal? Is it because, decades ago, it was considered middle age - you know, back when it was rare for people to live past their 80's. Was it because that, by forty x goals should have been made, and you should be settling into y kind of life? Someone, please educate me on why this is a milestone.
I know one reason why I wasn't keen on turning forty. People love to say "oh you are over the hill now!" No. With the Ehlers-Danlos Syndrome, I hit that point at thirty. In the past year, I've lost three EDS friends. One was just in her twenties. The other two were in their sixties. In 2016, the EDS friends I lost were all in their fifties and sixties. We don't seem to live much past that. Too many things go wrong. Too many things fail. The weeks leading up to my fortieth were the first time I really sat down and thought about what the end-game of this disorder looks like. I've been so busy fighting it that what is coming down the pipeline has been a distant shadow, even when watching those with EDS who are older than me go through it all. Denial can be a pretty thing until it smacks you in the face a few times.
My twenties and thirties were pretty awesome times. I travelled a bit, did storm chasing for three years in Colorado, did respite work for some pretty amazing kids, moved a lot, got back on my feet after disaster, married, bought a house, started growing our own food, learned to quilt and sew better, wrote and published two novels and more. The last few years, though, not much of anything has happened. Gardening has become much harder, though I still try every year. More adaptations need to be made to the beds, but the resources (those who can do the labor to install said adaptations) are few. I'm in Physical therapy just about as much as I'm out, due to injuries from trying to do gardening and sewing. I haven't been able to get to the gym to do water therapy, as it wipes me out too much afterward. I cannot get to the point where it doesn't. It's all this little annoying stuff which screams of the decline EDS can cause. I didn't want to turn forty because I know there is going to be much more of this. I need to be prepared to fight it as I've fought everything else Ehlers-Danlos and its comorbidities does.
So, forty was met quietly. No big parties, no hoopla. Just a couple of meals out and two little shopping trips. It was also met with me staring down what's coming and vowing to not let it break me. The new state laws regarding my pain management could easily do just that, mere months into this decade, but I pray not. I was just freed from two very toxic medications and do not want to go back down that road when we have something which is giving me some quality of life back. I'm staring down the injuries, staring down the predictions, and trying to turn the opposite direction. I'm gearing up to fight as I have been fighting. I'm gearing up for more and hoping the forties end up knocking the other decades out of the water.
#EhlersDanlos, #ZebraWarrior, #forty, #FightingEDS