It has been a while...That seems like the proper thing to start with here. And frankly, I wish I had been keeping up on this...That's what time seems to do here: remind you that you're not keeping up, and that it is only running out.
I am listening to Chris's "Rain King" (played with his band, Cruise Elroy; link HERE)...All of his vocals, his melodies even when written before he was hit with Lyme, ring with this genuine tone, this brutal honesty, even when the song is actually meant to be light and funny. That is life, a kind-of-funny exploration of the dark. And, we only get one. One life. Geezus.
We have had our struggles with Lyme but also all the personal trauma from the outside-- friends, family, colleagues, passers-by....People....Groups...Tribes. Stuff we have both touched on often in these letters....But day after day, year after year, we find ourselves still in utter disbelief at the lack of caring or understanding...Even in the new articles we find each day on a new species of tick or the new areas they are finding infected specimen in...all still greatly understate the severity of this disease and all the pain that follows with it...
More and more, I share the news that is unfolding and don't get me wrong, I AM GLAD there are more stories and reports, even though it is due to our lack of prior attention to it that has allowed this to spread and evolve even...I have so much hope that awareness will continue to grow until we see this for what it is, but I hate that we have to wait. Wait and suffer. Wait, suffer, and consistently feel like we are crazy or guilty. Years in, it starts to look and feel that way to others and thus ourselves. What is crazy is our delusions that this ISN'T an issue. That seems to be the trajectory of so many issues these days.
We are too busy fighting over who's group is better, or who to gain control over or over power. I am once again, finding myself on my own side with Chris (and at times, Chris states he feels entirely alone; there are things only he can know and feel that I cannot)...And no that doesn't mean shutting up and not participating, but rather means being more vocal and participating in the things we find matter for ourselves and humanity. Lyme Disease does not care about your age, or race, or gender, any social status...It feeds on human beings. On individuals. Thousands and thousands of individuals. I am not here to praise ourselves; there is so much I have done wrong, that I could have saved us time and stress on. We both have that on our heads and hearts. The big difference I am finding is I am learning and willing to look at things objectively and rationally. And this is hard for me; I am incredibly emotion-driven. I have a lot learning to do still; we are self-blamers, ridden with guilt all the time. I think to some degree we are all obsessed with self-loathing and blame...You should see how this happens with Lyme sufferers.
When society ignores it. even publishing these articles that say "Oh, don't worry you can fix this easily"....It is causing further separation between the sick and the rest of the world. We are ignoring biology-- this is something spreading and just because it hasn't effected you personally yet, doesn't mean it can't. Anyone suffering with a disease can identify, but having a disease without a huge mainstream-scare voice (like cancer or AIDS or even heart disease), just makes it more painful. They feel not only the pain of the disease itself but the pain of being essentially rejected or dejected from society. We are social animals; evolved monkeys...But we are very social primates, as they are. Social death is a real death sentence for so many people.
There is so much ignorance and yet so much hope I am hearing from so many voices out there. I hope the latter out-weighs it. I hope that we start to see through the corruption and blindness.
Meanwhile, we are still pushing through and making music and art. I am prouder than ever in these times to be learning so much and thinking for myself more. Chris is that type of artist who encourages everyone to explore, think, and appreciate what incredible things we are capable of. It is funny, how he gets so real sometimes that one might call him too "dark", but he just likes to seek truth. It's why I feel like I can talk to him about anything, in a world of constant surface-chatter. He isn't afraid of being wrong, he is ready and willing to discuss. We talk and go back and forth so often and each of us ends up learning something when we are done (this can be done over dinner or coffee...ha ha)...This is one of the things I appreciate him most for as my friend and partner. And really, it is why I call him my partner. Not for any cute-sounding reason, but because that is exactly what he is. My best friend and my partner: in work, in love, and in life. We are two individuals making up a duo that just wants to explore what we are capable of and grow together.
Lyme tries to hurt such things, but even in Lyme taking from us, we have also taken and gained from it. As lovers of science and philosophy, it has catapulted us into all different fields of study. Chris's exploration of philosophy has deepened and my passion in herbalism has grown. (So much so that I hope to be starting my studies/courses to become a certified herbalist very soon).
With that, I want to keep our words out there with this blog-- Our story and our thoughts. I hope in some way it is meaningful or helpful. If you are suffering, stay true to yourself. You know how you feel, your body, your mind. If you are alone, we feel your pain as well. And we are here to listen.