“Quiet people have the loudest minds” – Stephen Hawking
Lyrics from “Spinning Away” by Brian Eno & John Cale:
“Up on a hill, as the day dissolves, with my pencil turning moments into line…I have no idea exactly what I’ve drawn. Some kind of change, some kind of spinning away, with every single line moving further out in time”
“In spite of illness, in spite even of the archenemy sorrow, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.”
“If you’re any kind of artist, you make a miraculous journey, and you come back and make some statements in shapes and colors of where you were.”
This quote was the last thing I posted on my previous blog in November 2015. I hope that’s what I’ve been doing the past few years.
The only way I can wrap my head around years of serious illness and isolation is to somehow hope it was worth something.
Years passed in a blur. It’s one of those awful paradoxes where each minute of the day spent awake seems to last forever (in pain or a state of insomnia) but then suddenly I realized it was a new month. A new year. And I was still stuck in that chronic-illness-suspended-time-place. Stagnant.
I try to not think of all this wasted time. It’s not fair to call it “wasted” at all. It was hardly a choice. You try to be content in small moments, try to appreciate & acknowledge small achievements, but at the end of the day it is not the life you imagined or wanted for yourself. It is not a life you would wish on anyone at all.
Unfortunately I have no miraculous recovery story to share. I have multiple chronic illnesses (chronic means long term, means I will likely cope with them in some way the rest of my life). I was misdiagnosed, undiagnosed and mistreated for years and my immune and nervous system spiraled out of control until I reached a point where I could barely function on a daily basis.
If you’re at all curious, I have dysautonomia, lyme disease (as well as bartonella and babesia co-infections), and I was also exposed to toxic mold. At the advice of my doctor, I left my home (the source of the toxic black mold) with only the clothes on my back. I lost all of my belongings, all of my artwork, e v e r y t h i n g. I was essentially bedridden for 2-3 years, with extremely diminished brainpower/mental ability on top of physical symptoms. I was not myself. I could not be creative, I could not create art, I was stuck, unmoving, lifeless.
I am healing, I am not healed. I can now stand for more than a few minutes without fainting. I can smell commonly-used chemicals like perfume, detergent, or smoke and am no longer sent into anaphylactic shock like what used to happen every time I left my house. I have a chest port and still have to administer hours of IV medications daily, and there are other things I need to do on a minute-to-minute basis to stay in this improved state. My mental ability has improved. I can think again. I can read again. I can be creative again!
So like I said before, I have no miraculous recovery story to share where I tell you I am completely healthy and returned to how I was “before”. But if you saw me a few years ago, you would still agree that this is still a major improvement. And I am still hoping to reclaim even more of my life in the years to come, slowly but surely…
I am sharing all of this as a conscious decision to be more open and candid with anyone who likes my artwork or has found my website because of it’s illness-related keywords/tags. I want to share more parts of myself with you than just the pretty finished products I create! I could only have created them by going through this journey. I have a point of view that other artists don’t, and I hope it shows.
So I suppose Romare Beardon’s quote is fitting. I have made a “miraculous” (or at least an out-of-the-ordinary) journey and I have come back to make some statements in shapes and colors of where I have been! Thank you for stumbling across this and for following along with me…
PS- if you’re looking for more information about dysautonomia, lyme, mold, or chronic/invisible illness I have accumulated a ton of information and useful links/websites. I’d be happy to share them with you- leave a comment below or contact me here. [I want my blog to be more focused on art and how illness has influenced it and my creative process and less about my specific symptoms, health tips or a bunch of overwhelming information that can be found elsewhere. But I’d be happy to share advice/info privately if you need it!]