Meet our Visible Heroes for 2017
Every chronic illness survivor is a hero. Each year, a few of those survivors reach their spirits so high that they touch the stars. They take their lives and push into their own destiny. Pressing the boundaries of what illness labels us as, these survivors help others to survive, and they are catapulted into a new stratosphere of human capabilities. They are the rare, the few, and the amazing. They become this world’s heroes.
After a long heavy search for the Invisible Diseases heroes, this year’s brightest lights have been selected. It is an honor to introduce this lineup to the world. Without further ado, in randomly selected order, here are our 2017 Visible Hero Award recipients...
Here we have an artist who rivals the likes of historic greats who painted in bed and through their pain.
Erin B “E.B.” Fromkes
Erin B. "E.B" Fromkes
E.B. Fromkes uses her artistic voice to share unseen experiences and focuses on abilities found in disability. Many of her works relate to her living with CFS/ME, MSIDS, Lyme and co-infections. This mixed media artist and health activist creates paintings about her life and uses her condition as both material and subject matter. Adorning personal items, with leftover pills and decorating medical equipment to give them an edge, makes the journey more optimistic and helps spread awareness. One of her aspirations is to paint her way out of the darkness and make a life in Art throughout the process of recovery. Fromkes states, "I feel a certain responsibility as an artist to bring ‘invisible illness’ to the forefront."
Named by Professional Artist Magazine as having, "The Most Inspirational Art Studio in the Country," Fromkes lives and paints in West Palm Beach. She earned her Bachelor of Science degree, majoring in Art, from the State University of New York at New Paltz. Her works have been shown in numerous juried art shows throughout South Florida and can also be found in private collections. Proceeding 1st place in the Juried 2014 "Fashion ARTillery " at Armory Art Center, she collaborated in a project called "Melange" Where Art Meets Fashion @Continuum WPB. All looks that walked the runway did so for brave warriors fighting unseen battles. In 2016, Erin won the “Hector Ubertali / MUSE Award” which recognizes a Visual Artist, "whose life and work emulates excellence and contributes to the advancement of quality of life in Palm Beach County."
Currently, Fromkes is working on painting a quilt entitled, "Battle Tested.” She has been featured in various Magazines and is having a Solo Show at The Cornell Art Museum later this year.
See and support her work here:
Instagram @e.b.fromkes @thewarriorprincessbattle
Muse Award clip: https://youtu.be/G_wIJzMJLi8
Melange clip: https://youtu.be/lT10apRV2so
WPB magazine article: https://www.wpbmagazine.com/artist-erin-fromkes/
Ability magazine article: https://abilitymagazine.com/Erin-Fromkes.html
Next up, we have another incomparable artist, who creates stunning artworks amidst her great suffering.
Elizabeth D’Angelo - Love Warrior Visionary, painter of magic, healer of hearts, and spreader of hope - channels her creativity by maintaining an openness to play. While fighting an illness that has bound her almost entirely to her bed and bedroom for the last seven years, she transcends all boundaries by painting what she sees in flashes of insight. These flashes come in the form of playful curiosity. She says, “I am an adventurer with my heart. Where I can’t go with my legs, I go with my brush.”
She was at the precipice of world travel - planning trips to teach and make art in Uganda, Chile, Ireland and Bali, when her body started to shut down. She moved to Florida to heal and found herself becoming ever increasingly more ill.
“I am planning a Love Warrior Revolution. As a love warrior, I promote the fostering of courage to look at our fears and cradle them in love. My deepest fear is to stay here, trapped in this bedroom, but my God given purpose is clear: Teach Love - as far and wide as I can reach. So, I plan to baby step my way out of this illness one moment at a time - with courage, curiosity, humor, honesty, hope, wisdom, creativity, awareness and perseverance. Once I am freed, I plan to travel to you, connect with you and light your heart ablaze. Get ready!"
See and support her work here:
Now, a couple, who have made some of their greatest achievements together; though they are each undoubtably fierce forces on their own.
Dustin Wood & Kyli Wolfson
Dustin and Kyli have been through immeasurable suffering, including multiple surgeries, hospitalizations, feeding tubes, fainting spells and much more. They both have Ehlers Danlos Syndrome. Growing up with a complex chronic illness wasn't easy for either of them, but they eventually both made their way to Jacksonville, Florida, where they met at an EDS/POTS related get-together. They decided early on that they would devote much of their lives to helping others who live with Invisible Diseases. Their passion for helping others comes directly from the fact that they both have struggled so immensely; and unfortunately, from a lack of understanding from people, including medical professionals who are not familiar with their condition.
Their inspiring story of finding love through illness, has been featured on multiple media platforms. Their love for each other reminds them that great things come out of difficult circumstances. The couple is committed to spreading awareness about Ehlers Danlos Syndrome and educating the public on the misconceptions about the disease.
They give a strong voice to those with Ehlers Danlos Syndrome and other chronic illnesses, offering a direct support system for people who are sick and feeling loss. They believe that being chronically ill is exhausting, both physically and emotionally; but when we come together as a group, as a family, we are capable of more than we can imagine. That's why The Day of Visibility is such a significant day to the couple, and they are so very honored to be a part of it.
Dustin is a stand-up comedian and uses his life situations to make for some seriously funny laughs! What a great time these two must have among their difficulties. Their story has been featured on Cosmopolitan magazine. They have also been featured on Daily Mail, one of the UK’s premier online magazine and news outlets, as well as countless blogs and articles. This is an unstoppable couple who help to heal the world together.
See and support their work here:
Dustin Wood’s standup video at the famous Improv: https://www.youtube.com/watch?v=xLkqGoLDlSs
And now for an amazing spirit who conquered debilitating illness and helps others through artistic enlightening therapy work.
Alexandra Morris is a therapist, teacher and artist.
She fell ill with ME/CFS, Lyme Disease and Fibromyalgia at the age of 14, but was not formally diagnosed until age 21. Alexandra was forced to drop out of UCLA twice due to her debilitating neuro-immune conditions and it took her a total of seven years to complete her Bachelor’s Degree. Alexandra became bedridden for three years during her early twenties and was hardly able to sit up, walk or stand. She experienced limb paralysis, mild seizures, fainting, vertigo, debilitating physical pain, brain inflammation, and difficulty eating and breathing. She progressively lost neurological control of her body. At her worst, she was unable to brush her own hair. Alexandra slowly improved over the course of a decade. Art and spirituality became her saving grace through intense suffering. Alexandra began to write poetry, draw, paint, explore mixed media, record music and start art journaling as a means for emotional survival. She began to raise awareness about these invisible diseases through her artwork and writing to the general population as a means of social activism.
Through a seventeen-year experience of chronic illness, Alexandra has finally experienced improvement in her health. With deep gratitude and humility, she has decided to dedicate her life to exploring how the arts can be used therapeutically in individual and group settings. She is currently getting her Masters in Counseling Psychology with an Emphasis in Expressive Arts Therapy at the California Institute of Integral Studies. She is on the journey to becoming a Marriage Family Therapist and a registered art therapist. Currently, she's a therapy trainee at Marin Head Start and is integrating expressive arts into the pre-existing curriculum. She has lead expressive art groups with epilepsy patients, traumatic brain injury survivors and children. She's worked in the United States, Central America, the Pacific Islands and the Caribbean with children using the healing arts.
Furthermore, Alexandra has a private practice called Healing Light Therapy, in which she utilizes life coaching, meridian tapping, energy work and clinical hypnotherapy with her clients. Alexandra specializes in coaching individuals suffering from chronic health conditions.
See and support her work here:
For the finale of the show, we have a UK beauty queen who uses her challenges to raise awareness and hope through television and public events.
Kelly was crowned as Miss United Kingdom, and all seemed fabulous for this beauty queen. But what the public did not know was that she lived with unseen suffering behind it all. Back and forth to medical professionals, she was desperately looking for help with her mounting chronic ailments. She was diagnosed with ME/CFS, Fibromyalgia and the common accompanying nervous system and immune system ailments. She battled such harsh fatigue, along with aches and pains. This led to Kelly developing serious anxiety disorders. She went through bouts of OCD (obsessive compulsive disorder) and even agoraphobia. She was living a hell that most people could not understand.
Kelly decided to take her health and her life back into her own hands. She made the decision to go public with her suffering, in hopes of showing that these chronic Invisible Diseases can hit anyone, no matter how their lives seem to be on the outside. She was definitely living with invisible disease, and she was ready to help others who suffered from the same thing. As her health fluctuated, she pushed hard through the pain, to get back into the world and do something amazing with her life.
“I would do charity runs in my high heels!” Kelly says. “ I would visit schools and do various talks, at youth clubs even. I just did everything and anything I could.” A lifelong dream of hers came true when she was asked to be the UK Ambassador for The Dream Foundation Uganda, a non profit government organization that provides an orphanage and school for children who have lost, or are losing parents to HIV/AIDS. She also wanted to raise awareness for Invisible Diseases because she says she was sick of having to explain to people why she couldn't get out of bed and why she was constantly exhausted. “No one had heard of my chronic or autoimmune disease before, and to be honest, I don't think they cared. As they couldn't see my illness, it was easily forgotten or ignored. So I grew so tired and frustrated by this.” So she started contacting media outlets, telling her story on Channel 4, a major network in the United Kingdom, and for the Daily Mail, The Sun and other international networks. “Sometimes I succeed, sometimes I don't. It’s the people who have no way of speaking up or telling their story that I do this for!” -Kelly Waite
See and support her work here:
Kelly Waite IMDB page: http://www.imdb.com/name/nm8816392/
What makes a disease invisible? There are two main criteria:
1. Individual suffering is unseen by others
2. There are no standard tests, treatments or cures
Imagine living your life in total pain and fatigue. Imagine then having no solid answers from medical professionals. Then imagine yourself fighting for your life, with only your prayers and anything you can muster up to dream for a future again. This is the reality for millions of people diagnosed with ME/CFS (aka chronic fatigue syndrome), Fibromyalgia, Lyme Disease, Dysautonomias, Lupus, among other neuro-immune diseases. It is chronic, and we need to help each other though it.
I sit here with my partner, Randy Ordonio, who has been my daily hero. For without him, I would not be alive to tell these stories. Today, we honor ourselves, as we honor each other.
Dear friends, hold tightly to your dreams, and never ever ever give up. We promise, if we stick together and help each other through this, we will survive. We will win. We will all be heroes!
With heroic love,
Dr Franky Dolan and Randy Ordonio
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