Erin Fromkes:  Lyme Disease — An Artist and Her Sparkle

After being chronically ill for the past two decades, the now frail artist has recently been diagnosed with the cause-positive Lyme band findings, coupled with Multi-Systemic Infectious Disease Syndrome (MSIDS). These invisible illnesses, as they’re often referred, are debilitating in many ways. Fromkes channels her talents through art making and is emerging onto the scene as an artistic voice for a global community experiencing similar afflictions. A worldwide project launched by the artist in 2012, “Hope Hands for a Cause” is going into its 3rd year of participation. This ambitious fighter and advocate aims to open a dialogue about the experiences of invisible illness through her art, providing interpretation and a better understanding for viewers with the ultimate goal of expanding global understanding and compassion for those suffering through it.

When my mystery illness began exactly, I cannot say

I can remember being in and out of our elementary school nurse’s office frequently —Mrs. Yarn, the sweet elderly lady with pink vintage glasses and curly hair. I paid more visits to her than the average child. I was often unwell and sent home to rest. In between the bits of ill, a magical childhood filled with fireflies and illustrious imagination unfolded. Secret hideaways were revealed and seasons were spent coloring in my festively decorated art nook, as my mind, like any child’s, danced with dreams of exploring the world and voyages of limitless possibility.

Fast forward to middle school. As the only player in the band with an oversized sparkling brass French Horn (that’s half my size mind you), I stood out, as did this exotic horn. I was immersed in a sea of long haired flute players and clarinets. One day the horn was passed around the band class in jest, for others to toot. This innocuous and innocent event was really a germ-sharing party, which resulted in my first severe bout of mono. What later manifested were two battles with chicken pox, another bout in high school with mono and a time span that included severe flus, fevers, cold sweats and head pain piercing enough to cause hospitalization. All of these were likely to be caused by more than simple viruses.

College brought the typical cycle of parties, good times, friends, and intense studying. Everything was squeezed in between falling ill, often with viruses which sadly, I had become far too accustomed to fighting, including a third bout of mono and then a fourth. Despite all the adversity, future plans of a career in the arts brimming with fancy gallery openings, elite social engagements and the quest for true love hung in the foreground. I imagined all of these opportunities would lie ahead.

The thing about life is that you just don’t know how things are going to turn out

Who knew these early experiences with illness would evolve into months, and then years of time, eventually to the point of consuming my life? The countless doctors and office visits that would double - then triple? “Needles and blood tests and IV’s—oh my!” MRI’s and cat scans were soon to become a normal part of my routine. I spent so much time tossed within an endless system of networks and traveling across states to see a specialist… all the while with my body crawling with invisible meanies and strange puzzling symptoms and none of the doctors knowing why. There were herniations, degenerative discs, months of physical therapy, trips to the ER, acupuncture, excruciating immobilizing pain and spinal surgery! What a spiral! Good days became a thing of the past, leaving only distant memories of social outings, riding bikes and summers at the beach. I was left with the cold reality of strange, relentless exhaustion that would weight itself and cling to every fiber of my being—the unwelcomed visitors draining my life. Still, the search for answers remained.

Hopes and dreams are scaled back when life unfolds in such a way, so much so that now my time and focus consist of merely surviving the days and keeping positive. I am truly blessed to be surrounded by love and to have the help and support of my wonderful parents. Together we continue to try and make lemonade. My saint of a mother, unpredictably, has parted from her own house and marriage to become my live in nurse, housekeeper, caretaker, medical secretary, professional juicer, driver, salad maker and personal shopper. My sweet, patient father has become a tea maker, art assistant, wheelchair pusher, vegetable washer, grocery shopper and cook. This is a relationship that is skewed and has been adapted to help carry out the basic essentials that any young adult should be able to handle with ease on her own.

Excerpt of a daily “strive for” list

… make wheatgrass, push to eat three healthy organic gluten free meals, take all of your proper medications at the right times, sort your pills for the week, soak vegetables for green juice, call your doctor’s office (several times) to make sure they faxed results to your other specialist, find time for basic yoga and practice your Emotional Freedom Techniques (EFT) tapping, breathe, go outside—if you can today—and get some sunshine, feed the cats, respond to emails, make art, make tea, walk up the block...

I have always been an artist, but now I make art that is more personal

My creative voice comes from a combination of personal experiences mixed with imagination. I have figured out a way to exchange the physical to art-form and to give the malady a face. Internalized feelings that have manifested over time are unleashed into my works. This art therapy aids in my healing process.

One style of my work is short-lived because I use my leftover supplements to create them. I call them Medicine portraits. They are a series of temporary pieces, captured through a sequence of photographs. Created using pills, pill powders, teas, liquids and tinctures, these familiar, far too often consumed substances serve as my mediums. Delicately poured out in small quantities, manipulated powders and liquids become strange figures and ghostly portrait… here one moment gone the next.

Other, more permanent works aim to capture moments of time and emotion. These pieces represent fragments of my life, and when placed concurrently together, tell my story. Paint is the substance I use to color myself out of this pained labyrinth. As such, everything gets enveloped in color and is smattered with collaged bits. Vibrant energetic works, wearable quirky head pieces and heavily splattered outfits illustrate my passion and love for art, and also depict two contrasting worlds… the one within which I am trapped and the healthy energetic physical realm in which I dream to return. I forgot to mention the digital Bed art that I have been making recently… UGH!

Art sharing

I got into the Instagram craze in its infant stage, so there were not many of us out there at the time. As time marched on, several other young people, who did not look sick, were beginning to bravely post their daily battle pictures. I was instantly inspired and enamored with what I saw.

How can this be? I had never seen others in real time that were just like me! Unknowingly, I had stumbled across a small group of people that would eventually blossom into a tight-knit group of thousands and that this soon-to-be future world would allow me to communicate at any given hour of the day for support, with mirror images of myself.

The realization that I was no longer alone in this fight has helped me to become a more proactive artist as well. I feel a certain responsibility to use my creative voice to bring “invisible illness” to the forefront, because there is such urgency to this. Underfunded illness research and the lack thereof result in treatments that often impair human lives. Therefore I use art as my weapon of choice to express the frustrations with this.

Social media outlets such as Instagram and Facebook have been invaluable tools. What a rare gift it is to be an artist this day and age… the power that lies within this is such a blessing. I am bedridden and housebound most of the time, but through technology, I am able to create art from under the covers using a tablet. Now I can connect and share all of my creations by posting them in a matter of seconds. These posts are gateways to an outside world, giving me an instant audience! I have a mix of followers, many of whom are in the same boat as I. As such, it is very gratifying to have a compatriot look at my work and experience that “me too moment”—“the ah ha” I get in understanding where this piece is coming from and the response to it… totally priceless and comforting, too.

The good stuff

It is easy to lose sight of the good stuff—the fun activities. Keeping busy with art projects really keeps me looking forward to the future. I plan to continue to sprinkle color, light, glitter, love and joy into this gaping, pained pit of exhaustion. I will not relent pushing forward into the light. My mission in process is to create a website of my artworks where Spoonies—people that live with chronic illness—can visit my online gallery of works that might speak to them, to share visible hope, as well as include future art challenges that will encourage art as therapy and give chronically ill “creatives” something to look forward to. With a present focus on healing and art making, future dreams to develop a chronically ill artist community and healing art center sparkle on my mind’s horizon.


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Excerpts from the Laura Dern Feb/Mar 2015 Issue:

Costa Rica — Vice President Ana Helena Chacón Echeverría

China — School for Everyone

Richard Pryor — MS on Fire (The ARCHIVE Files)

Lyme Disease — An Artist and Her Sparkle

Laura Dern — WILD & Enlightened

Mammogram — The breast things in life...

Nick Vujicic — Excerpts from Love Without Limits

Articles in the Laura Dern Issue; Ashley Fiolek — Happiest Riding!; Humor — Come Back as a Kitty Cat; Geri Jewell — Real Connections; China — School for Everyone; CC Brown — Annual Mammogram Scam; Long Haul Paul — NO Car for Me; Lyme Disease — An Artist and Her Sparkle; Costa Rica — Vice President Ana Helena Chacón Echeverría; Richard Pryor — MS on Fire (The ARCHIVE Files); Special Olympics — Preparing #LA2015; Recipes — Sweet Treats; Laura Dern — WILD & Enlightened; Cornell — Section 503, New Rules; Nick Vujicic — Excerpts from Love Without Limits; ABILITY's Crossword Puzzle; Events and Conferences... subscribe

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Amara Erin Fromkes:  Lyme Disease — An Artist and Her Sparkle