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. Erin 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 germsharing 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.
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Erin Fromkes is a mixed media artist, grower of sprouts, glitter princess, and badass who paints everything. She fights EBV, CMV, HHV6, DDD, (ME/CFS) with a twist of Lyme disease & co-infections.
- Multi-Systemic Infectious Disease Syndrome – (MSIDS)
- Epstein–Barr virus (EBV) Cytomegalovirus (CMV)
- Human Herpesvirus 6 (HHV-6)
- Myalgic Encephalomyelitis (ME) also called Chronic Fatigue Syndrome (CFS)
- Degenerative Disc Disease (DDD)
- Positive Lyme Bands & co-infections
- Co-infections include: Q-Fever (Coxiella Burnetii) & Babesia Microti