Thankfull...

Last night at our counseling appt., my current health situation came up. In that conversation, we started talking about my past health issues (lupus) and how things were handled then. It really brought back some memories, some not so hot, others amazing. I realize how fortunate I was to have had the people in my life that I did at that time.

I was diagnosed with Lupus about 12 years ago (gosh has it really been that long?). When I was diagnosed, I lived on my own in another city with no real contact with my family other than my grandparents (who are godsends) and a cousin who ended up betraying me soon after. Granted, I was then and am still a very independent person - not needing very much emotional support, but those times were dark for me. There were several people who stood with me then, but two stand out in particular.

The night I found out, I headed down to Norman to see Scott and Jan. Being the “Iron-Guts-Kelly” type that I am, I pretended all was well. No big deal! My doc told me that I would probably not see my 26th birthday, that lupus would eventually kill me one way or the other and that there was no cure etc etc… He has the bedside manners of a toad. Granted, at the time of my diagnosis, there really WASN’T a whole lot you could do other than lifestyle changes and going on meds. And that only delayed the inevitable. My head was completely screwed with the prospect of not living to get to see things I wanted to see, and do things I wanted to do. I was torn between ignoring the doc and going on as I had been, or making changes to try and slow things down, get out of the flare and hopefully go into a VERY long remission. I was leaning to the former until I got to Scott and Jan’s little apartment.

When I walked in, I was kind of nervous (and frankly – embarrassed) about everything. I hate people treating me weird for any reason, and I DEFINTELY didn’t want them to think of me differently or see me as some sort of victim. Their good character showed when they started joking with me and making me feel far less morbid. We discussed everything, and they helped me get through that initial shock. Being there, with them, I felt like things were going to be ok. Nothing to fear anymore.

I can remember how much fun I had at their house. We always had great times – whether we were listening to 80s music and singing along drunk and laughing, or deciding which desert best represented each person (I am the divine chocolate covered espresso bean per Scott, Jan was the American Favorite Chocolate Chip Cookie, and Scott was the Irish Coffee… of course LOL). I don’t remember who else was there for the desert conversation… though I am pretty sure there WAS someone else there. I believe they were apple pie? A la mode? LOL Here I am just giggling remembering that.

On a more somber note… I made Scott the executor of my “estate” (hahaha I didn’t own anything of value save for some old records that no one but me cared about anyhow). I suppose it would seem an odd choice to those outside our little world, but it made sense then as it does now. I remember how serious things got during that conversation and how I first felt my mortality. Very weird to feel that at age 21. Anyhow, one of the things Scott said he would do for me is stand watch. I was very moved by this. More than he ever knew. IT wasn’t something I asked for – he just said plain and simple that he would be doing it and that was that. It was strangely comforting to know that he would make sure nothing happened to me that was unseemly, and that he would stay near until I was put into the ground.

Something that seems rather morbid and well... gross to some is that I promised him my hand. Yes – my actual hand... well the bones that is. I wanted to have a harp made with the bones of my hand as the support for the front of the harp. It was the best gift I could think to give his morbid self. Scott is into that sort of thing. One of the running jokes was that he would keep the harp with him at events, and set it outside at night so that when I came to haunt – I could play the harp and he would know I was there giving a good spook. The jokes evolved from that and we were all practically crying with laughter. Thing is… I still would do it. I still want him to have my hand to make the harp.

My friendship with Scott has degraded over the years... no doubt to misunderstanding and pride and god knows what else, but I cant ever forget the support that he and Jan were … (though Jan who isn’t a volatile person like Scott and I is still one of the people I love most in the world and would do anything for and would practically do back flips to see again). Last night my councilor said that it was a real gift in life to have not one person, but two people to carry me through. With out them, I am sure I would not have had the will to get myself out of that flare.

On my 26th birthday, I didn’t do anything big or spectacular. It was quiet. But in my head I was giving the middle finger to my asshat doc and thanking GOD for Scott and Jan.