Close enough to the same time for the past three years to now be called a season – the legs swell, starting at the ankles, feet, calves – at first only a little, only enough so that you hope it might go away this time, pass me by because somewhere we did something right – but again it is here, and I only know enough about it now to be afraid. The swelling, the flesh stretches, dries, cracks, then a thin, yellowish clear (or clearish-yellow) fluid begins to seep out of almost the entire calf, behind the knees, at the ankles under the bone. It runs in rivulets down my legs or soaks like water through my pants. It’s enough to drive me insane, if I wasn’t able to sometimes laugh, if I didn’t have something of a morbid humor & fascination that I can sometimes dredge out of the frustration and pain. Hell, through all the crap it helps to figure out ways to smile, even if it’s by swearing at my legs and threatening to disown them. (Do they do leg transplants yet, or should I start building my little skate-kart now? I’ve got some wicked sharp knives and a low tolerance for this shit anymore, ye hear that, you traitorous bastards?) The first two years I went with the words of the dermatologists – “Moisturize like crazy.” – but while that helped the dry skin & itching (as long as I kept them wrapped in a couple rolls of gauze then ace bandages so it wasn’t simply immediately caked on the inside of my pants or skirt – GODS, I miss wearing my skirts!) – while it helped with the dry skin, the second the rolls of saturated gauze were removed, my legs poofed up again and now – now, the skin was soft. Instead of only the dry flakes of skin falling off, my fingernails found no decent barrier between the outer layer of flesh stretched thin and regardless of how lightly I scratched, they cut, gouged past the only protection, digging into the white, soft flesh with no resistance. Down atrocity legs ran rivers of blood. When I changed the dressing, I would soak through paper towel after paper towel to the point where they were dripping. Towards the end of last years season I finally realized that I could have some twisted fun “painting” with the blood, quickly setting a towel on my leg then taking it off. A couple pictures are below – though those certainly aren’t my best work. I try to keep my spirits up. I try to remember that there is more to me than this. I try to learn. I try not to scratch, but that’s nearly impossible. (And of course you wouldn’t be thinking “Why doesn’t he just not scratch?” – would you? No, of course you wouldn’t be so completely idiotic or dim-witted as to have that cross your mind – but then again this automatically posts to Facebook & Twitter, so just in case…) Imagine a huge, unbearably itchy mosquito bite right in the middle of your back, the place you can’t reach. Now slap some Poison Ivy on it. That’s close. Now some poison Oak. Getting there. Now imagine the insane relief when that spot is scratched. Get the picture?
That’s what it is like on both of my legs, with slightly less over much of the rest of my body, mostly my shoulders & arms, chest & lower & upper back. One small place starts itching and it expands. I can usually only stop when the relief turns to pain, or close to it. There are times when I almost weep, times when I literally can’t stop to make it out the door to an appointment. I feel like I should be stronger than this, that I should be able to use my mind to control it, to at least be able to… I don;t know. Stop.
It feels like the itching is coming from deep inside, inside the bones. I have learned to keep my fingernails trimmed close, that sometimes rubbing violently with a rough terry-cloth towel will help. I try.
I learn. I sometimes scream in frustration. My dry, powdered skin coats almost every surface. The larger pieces fall to the floor. The legs are an entity all their own, thick, moist scabs & chunks of flesh. I can pick those up with my fingers. Alice wears my flesh. I wipe almost all the surfaces down daily, sometimes twice, vacuum every couple of days. I’ll be damned if my home is dirty. A clean home helps keep my spirits as up as possible -(and you know, all those visitors I get.) When dealing with this, my strength, my spirit, and my passion for life is all I have to keep me going – through it all, these are the gifts I have been given. Still however, at times these wane, and I don’t know what I would do without Val & John, my nurse & doctor. Our relationship goes far past patient-caregiver. They are my friends. The friends I have been needing since that call in 1985 but never had until them – and they know me well enough for me to trust that they are true. When all of the strength I have just doesn’t seem to be enough, I know that they will be there, and I know that they will understand. It seems as if they see something special in me – as if they see who I’ve always felt myself to be. Of course, there have been and are others, a few people who have come into my life and remained deep in my heart, but those have usually been lovers, whose heart I remain in, but whose life I couldn’t… Just the other day John looked at me, straight in the eye, and told me that he is grateful that I’m a part of his life. It’s because of him, because of Val, because I have so much left to do in this overwhelmingly beautiful world that I’m going to keep fighting. I am going to keep fighting and beat this. There is someone that I am becoming, and I would love to know who that person is. These are words. Words that needed to be said, so that they can finally be released, discarded, taken out of my head. You now know a small amount of what my immediate life is like, where kSea has gone. I’m busy doing whatever I can to kick the crap out of this. I’ll be back, but different, and with one hell of a passion, one hell of a vengeance. You don’t go through shit like this without having it affect you in some way – learning, growing, becoming more appreciative of the smallest things. You see more, love more, and have an uncontrollable urge to smack life into the dull and mundane – (or maybe those are still the side effects of the Hep-C drugs…) One last thing, please, I can’t ask you with enough importance to me – if you choose to comment on this or any other post, do so here on my blog. Some comments I receive are beautiful, mean a lot to me – and I want to keep what you say regardless of what it is. I still have comments from years ago that lift my heart when I read them – but if you comment on Facebook, they will soon be lost forever. I would hate to have that happen. If you have an inkling to call, text, or email, my phone number & email address are everywhere. Please. Really. In order to get or reply to messages on FB I need to use my computer battery, and these days fuel for the generator to charge it is very tight – and I have been tending to stay away from cafe’s since I’m supposed to keep my legs up – and yeah, the whole top of my mouth is gone too. That post is coming soon…
And now, picture time!
Though I wish I would have taken many for my own morbid & grotesque entertainment (my hands were usually covered in blood), here are a few photos that I have, mostly in order – beginning with my first staph infection on my calf, then the next staph infection which sent me to the emergency room at Love Parade a couple years ago – and on. The second year of swelling when it was clearing up, at BM ’08, and some rather unexciting ones from the past week or so – oh, and of course, a couple of the paper towels.