I am Kali. I answer to a lot of other names, but that one will do for now. For the record, it’s actually a nickname drawn from my real, given, birth-name – I didn’t just make it up because it would be cool to be named after the Hindu goddess of death and destruction (granted, it is cool, I just didn’t make it up! I do find it kind of amusing to be connected to a goddess whose name means ‘dark colored, black’ when I am one of the whitest people I’ve ever met)
It is hard sometimes to explain why we do things, but that is what I’m attempting today. I am starting this new journal because now, I have answers.
To what, you ask? To the mystery symptoms.
I have Ehlers-Danlos Syndrome, classical type (c-EDS). It’s a genetic condition; I suppose you could say I have had it since conception. All my life, I have been told that I must be clumsy because of how often and how badly I have managed to injure myself. It would be more accurate to say that things that would do no harm to a ‘normal’ person can be devastating to me. Because of the collagen flaw that EDS causes, my connective tissues are very fragile.
Allow me to illustrate what this means. Your ligaments are all connective tissue; they hold your joints together. Imagine that your average person’s ligaments are like rope – they’re pretty hard to tear, and they’re good for securing things into place. Mine would be more like rubber bands – easily stretched out of where they ought to be, pretty lousy at holding the bones together securely, and oh yeah…they snap a lot easier.
So, all of my life, I have easily and frequently sprained, dislocated, subluxated (that’s a partial dislocation), and hyper-extended all of my joints. I was born with unusually tight joints, so my joints are in relatively good condition for a person of my age with EDS.
Sadly, that does not in the end mean much. I am still, at 25, disabled. I walk with crutches or a cane, because my hip and back trouble me if I do not. I am in chronic, severe, unending pain. Between the pain and the medications to manage it, I am nearly always fatigued.
My diagnosis is recent. On January 30, 2009, I finally received a definitive diagnosis. I had suspected EDS for several months at that point; I had been told I probably had it by a rheumatologist, and told that I definitely didn’t by a geneticist (but I kind of ignored that since he didn’t pay any attention to anything I said).
This is year 1 for me. Not of being sick/disabled – I have had joint problems since I was in my teens, and abruptly became very ill in August 2007 (from which I have never recovered – we suspect that I developed fibromyalgia at that point). But year 1 of knowing why.
There is a lot to talk about. The reality of having a diagnosis that means that it’s all downhill from here. My wait for a service dog. Trying to keep life meaningful when so much is taken away from you. Disabilities rights and accessibility issues. Law school, where I am in my second year and trying desperately to finish my degree. The future. Love.
So welcome. It’s a bumpy ride, but there’s room for you to join me.
But first, a few ground rules.
1) Don’t say that there’s a reason for this. No. There is no reason for a person to have this kind of suffering. This is not a point I’m willing to argue. Just don’t.
2) If you do know who I ‘really’ am, kindly stick to calling me Kali or Brilly or BMBB – something drawn from the name of this journal. I do not want my ‘real’ life to find this journal, so I am trying to keep it very separate. Respect that.
3) Play nicely in the comments. Don’t start flamewars. If I ask people to stop dogpiling someone, no matter how much you think they deserve another comment, restrain yourself. You are welcome, nay encouraged!, to disagree with each other, but do it politely. I will remove comments I think are inappropriate, and if I need to, I’m sure I can figure out how to ban people. In general, you’ll get two warnings, but if it’s something particularly egregious, you might not.
4) Like Aretha says, R-E-S-P-E-C-T. I’m not asking for much – no name calling, no insults, no personal attacks. Got it?
Right, now if I could just figure out how to get this car in gear…