A quick sketch of my chest port in honor of Lyme Disease Awareness month!
My Lyme diagnosis came almost 10 years after I was bit by multiple ticks while hiking.
What do I wish I knew then?
- Many people do not get the bull’s-eye rash, and you can absolutely have Lyme without presenting a rash (contrary to what my Dr told me at the time.) I could’ve saved myself from years of pain and cognitive dysfunction if I had been treated immediately after my bites.
- Routine blood tests for Lyme are not reliable and could prove deadly (link)
- Also, be sure to research Lyme CO-INFECTIONS, these can be even more harmful than Lyme itself- I also have Babesia and Bartonella.
- 80% of ticks in Europe carry Bartonella and if you happen to be in NY over 40% of ticks in the Hudson Valley are positive for Lyme AND Babesia (and these rates are increasing all the time).
- Also, because this is a picture of a port, I’d like to warn anyone with a PICC line to be aware of the symptoms of blood clots. I had a picc for ONE week and developed DVTs (aka blood clots) almost immediately, but doctors thought my symptoms were from an allergic reaction. It wasn’t, and I almost died. Ports require major surgery with anesthesia but can safely last for years and there is way less risk of infection and clots. (I’ve had my port for almost 4 years now with absolutely no issues, one of the best medical decisions I ever made! It has also allowed me to treat my dysautonomia with a liter of saline everyday since no other medications helped!)
- Lyme almost always appears alongside other chronic illnesses like dysautonomia/POTS. I believe this is because our immune systems are compromised and therefore we are more susceptible to infections like Lyme and co-infections.
- Lyme is commonly misdiagnosed as Chronic Fatigue Syndrome, Dementia, Arthritis, or Fibromyalgia.
- Bartonella (which greatly affects your brain) is commonly misdiagnosed as an emotional or mental disorder such as depression, anxiety, or even Bipolar Disorder and then you are often prescribed psychopharmaceuticals, which do not help since they can only mask the Bartonella symptoms for so long before it’s obvious they aren’t alleviating symptoms…and then of course you’re even worse off because the root cause has been ignored and once you’re labeled with a psychological condition it is nearly impossible to get doctors to believe you have a serious health issue and not be brushed aside and treated as if it’s “all in your head”!
- Babesia is known as a “blood parasite”- it is almost impossible to eradicate because to do so, you’d have to kill yourself (literally- since it is in your blood cells). (link)
- If you think you might have Lyme, you really have to be your own advocate, don’t let a misguided doctor brush you aside or misdiagnose you like I dealt with for a decade!
- Interested in why Lyme or Chronic Lyme has become a “controversial” topic? This article (link) sums it up nicely
Feel free to comment with any questions!
PS- It’s also Ehlers-Danlos Syndrome (EDS) Awareness month (shout out to the zebras!)
Another painting in progress with a little bit of lime green in honor of Lyme awareness (and it shows my hand which frequently experiences severe joint pain that sometimes prevents me from painting at all).
“Found Dancing, Push the Sky Away”
Watercolor on paper (5×8 inches on paper)
This is one of my favorite pieces that I’ve made this year! The composition just appeared naturally and effortlessly from a spontaneous under-painting. The flow of shapes and colors just makes me happy to sit and stare at.
(In progress photos– under-painting and peek of color swatch/notes during the painting process)
*This painting is available, contact me if you’re interested in purchasing!
I painted/designed the cover for this beautiful book full of empathy, fierce women, and a touch of magic realism…
Have you ever read a fiction book with a chronically ill main character? (Probably not, right?) Any young woman with an invisible illness/disability will see herself in this book, and anyone else will gain some much-needed insight into the lives of women who are “still sick”.
I’m sure I’m not the only one who’s been asked that question, too- “You’re still sick?” goes hand-in-hand with “but you don’t look sick!” and “get well soon!” after you’ve just said you have a c h r o n i c illness. Yup. Thank you [sarcasm].
I went many years trying to hide my illness. I didn’t want to appear like I was complaining or exaggerating (which I think is very common particularly for young sick women who are often dismissed as “faking” symptoms), and I didn’t want it to define me. I wanted people to remember me for my work, my art, not as “the sick girl”.
But I did myself a disservice by doing this. Illness is a part of me. It has shifted my priorities and dictated my time. I would spend however long my body allowed me to “act normal” and then I would go home and collapse. I would have to recover from doing normal things. I had to schedule my time so wisely.
No one knew in my college classes that being there that day meant I would not be able to cook dinner that night. That the energy I expended on learning and working those couple of hours would mean I’d spend the next day holed up in a dark bedroom waiting for a migraine or some other unbearable pain to lessen. I had to plan my days around tasks like showering (if I did that before class I might faint while standing waiting for the bus, so I’d try to shower the night before, etc etc etc…. endless planning of things most people don’t even think about. #spoontheory)
Looking back, I wish I had shared more with my friends, family, professors, etc. Perhaps if they were open to learning about chronic illness, I could’ve helped spread some empathy. They would’ve been a little more understanding of the next person they met. Perhaps they would consider that just because someone doesn’t LOOK sick, doesn’t mean they aren’t. They would know that despite what popular movies and books portray, illness does not end in only death or miracles. Sometimes you get sick and just stay sick and that is your new reality.
I no longer want to hide my illness. Years of misdiagnosis meant years of extreme suffering. But I am finally beginning to heal and want to share all parts of myself and my art, not just the pretty end products! There is so much more to come!!
Thanks for reading,
Left: “Discordant” watercolor 5x7inches.
Dripping, flowing jewel-toned notes of music. Experimenting with new layering techniques. Loving this bright color palette of olive green, red violet/magenta, and deep golden yellow.
Top Right: “Place Undreamt” watercolor 8×10 inches.
Shapes in constant motion, forming abstract dreamy landscapes and blooming colors.
Bottom Right: “In Your Brain?” watercolor & ink 8×10 inches.
Inspired by turning music into art.
Some details and before/afters of paintings I’m currently working on.
“Quiet people have the loudest minds” – Stephen Hawking
Shapes inspired by ocean plants. Muted, pastel colors composed in an organic puzzle of shapes joined and fit together.
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”
“Lush Melodic” Jenna Decker 2018
(watercolor on paper, 8.5 x 12 inches)
Another music-into-art work. Shapes and colors composed to visually represent music. I think there’s an interesting sense of motion in this piece, moving from the detailed layers at the bottom (which could translate to individual notes in a piece of music) to the free-flowing shapes at the top (which represents more of the emotional component and over-all feeling of a certain song).
Leave a reply below or contact me here if you wish to purchase this piece.
“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.”
(under-painting & details)
Title: Layers of Sound
Size: 8.5 x 12 inches
Medium: watercolor on paper
© Jenna Decker 2018
Swirling candy-colored shapes, slightly psychedelic, a groovy painting! Something totally new for me. Inspired by turning music into art. I loved painting this and getting lost in the layers of color, movement, and sound.
Contact me if you wish to purchase this painting.
“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!]
Website and blog are still a work-in-progress, so be sure to follow and keep an eye out for new developments!
My old blog was jennadecker.wordpress.com, if you followed me there I hope you’ve found your way here and will continue to follow my work! Thank you for understanding the years of hiatus. I’m slowly climbing out of the chronic-illness-abyss and looking forward to sharing more now!
Thanks for joining me on this new journey.