Visible Heroes 2016
- randyordonio
- Sep 11
- 5 min read
Invisible Diseases Day of Visibility June 6, 2016
MEET OUR 2016 VISIBLE HEROES
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 hold 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 2016 Visible Hero Award recipients…
MONICA ZAVALA
Invisible Diseases Visible Hero 2016, MONICA ZAVALA
Monica is an extremely hard working mother and advocate who has battled serious ME/CFS for many years now. She is an example of following your heart, thinking locally, and ending up with a global impact! Monica began a small support group in her home in Silicon Valley. She had a deep pasison tohelp others who had nobody else to talk to or relate to. Due to her enormous heart and enormous efforts, Monica helped to expand the group to so many people, that they were spilling out the door. She brought the support group to be held at the famous Palo Alto Medical Foundation hospital, where world leaders in neuro-immune Invisible Diseases speak and connect with an enormous number of Bay Area Invisible Diseases survivors and caregivers. Because of Monica, countless people have found hope where there was none, and friends where there were none.
Please take a moment to see her interview video (below) and read her proclamation here:
"Have you ever been on a bad carnival ride that you couldn't get off of?
That ill feeling that overtakes your entire body, leaving you with no control to stop the misery. As you look around amidst the chaos everyone around you is smiling, laughing and carrying on. This ride from hell affects millions around the world and is known as CFS.
Looking back, I believe I had CFS even as a juvenile. As I got older, the disease became more pronounced, more disabling. I was housebound for many years and bedridden for part of that time. My young children had to accept the unfortunate limitations that their mother had to offer. I thank the few family members that were there for me, specifically, my loving mother, my life saver. Her support and care for me and my children has been the biggest blessing in my life.
I believe that one of the most valuable things in coping with any chronic condition is knowing that you are not alone, knowing that others can relate. As I worsened, I needed to connect with other CFS patients and put my limited energy into starting a support group.
In 2005, our first meeting was held, right out of my mother's living room. Today, CFSBayArea has over 100 online members. I credit and thank a few unnamed people for their assistance in helping me keep our group going. Our small, yet invaluable, in-person meetings are still held monthly in Mountain View, CA.
Although my condition has improved, I am far from healthy. The struggles of invisible illnesses such as CFS are very real. I assure you, that weakness and exhaustion are just the tip of the iceberg. Severe patients are often sicker than those with HIV. We do not lounge in bed with a remote, eating Bon-Bon's and napping. The pain, lack of strength, ill feeling and relentless fatigue, amongst many other symptoms, can be utterly consuming.
Patients- You are some of the strongest folks I've ever met. Smart, passionate and valuable. You are not alone.
Caregivers- Be kind to yourselves for the job is not an easy one. You are somebody's blessing and for that, we thank you.
Advocates and Researchers- Our silence would be deafening without you in the front line. Your effort and passion keep us hopeful.
Franky & Randy- I admire you both so much. Amidst your own struggles, you give us your precious energy, time and compassion. Thank you for all that you do and for your work with InvisibleDiseases.com xoxo.
Thank you for this amazing award. Although I feel it undeserved, I humbly and graciously accept it, dedicating it to my late friend, Amberlin Wu. Hope is like a bird that senses the dawn and carefully starts to sing while it is still dark. – Anonymous
To find out more information about our support group, please contact me at cfsbayarea@yahoo.com."
-Monica Zavala (Our Visible Hero!)
CFSBayArea
See Monica and her friend, Amberlin Wu, being interviewed by Dr Franky Dolan here:
CATHI MITCHELL
Invisible Diseases Visible Hero 2016, CATHI MITCHELL
This woman is an incredible example of how to survive, for decades! Turning "lemons into lemonade" is her motto; on a regular basis, she fights hard to endure what most people can never even imagine going through. Her entire life has been a battle against illness, and she has triumphed every day, with a strong faith, open mind and endless heart. Her positivity is like an ironclad; the greatest weapon in the war against immeasurable suffering. Where some people might become bitter and distant, she has rissen above to shine like a brilliant hopeful star among the darkest skies. Cathi is a true beacon of strength and inspiration to people everywhere.
Please take a moment to read her proclamation here:
"I've been sickly most of my life and have been passing out since I was 14 years old.
It never seemed like the doctors really ever knew what was really wrong. It took getting to the point where I was passing out 20 times a day, couldn't keep any food down, had severe joint pain, migraines and a host of other symptoms that a cardiologist finally diagnosed me with an autonomic nervous system disfunction 30 years later, at the age of 44. It still was not until 6 years later that I was diagnosed with Ehlers Danlos, a connective Tissue Disorder.
I make every effort to raise awareness about these and other invisible illnesses so that no one else has to wait as long as I did to have to be diagnosed. Awareness and education is the key.
My heart is overjoyed at the amount of people that I have been able to help to get properly diagnosed, just from them reading my social media posts, or awareness efforts, or when I get to educate doctors and nurses during my ER visits and hospital stays. Going to the hospital is a LEMON. Using it as an opportunity to raise awareness......LEMONADE!!"
-Cathi Mitchell (Our Visible Hero!)
ANNA MINA EMUNA
Invisible Diseases Visible Hero 2016, ANNA MINA EMUNA
Anna comes from an amazing family who fought unimaginable repression, and now she survives with Myalgic Encephalomyelitis (M.E.). Despite her own suffering, she works endlessly to raise awareness and compassion for those with Invisible Diseases. She helps others to never give up!
Please take a moment to see her video (below) and read her proclamation here:
"Myalgic Encephalomyelitis is the name I would come to learn over 33 years of fighting this invisible disease, which has no beginning, and no end.
Today there continues to be little recognition for the millions of survivors, and fighters who live with this battle every day, month, and year, decade after decade.
For those of us who endure this struggle of an unforgiving, relentless, frustrating, untreated, disregarded, disrespected and ignored suffering for millions housebound and hidden. We are the forgotten.
Let it be known, we with Myalgic Encephalomyelitis, are never giving up, and one day our plight will have new meaning.
We will have 'OUR DAY'. "
-Anna Mina Emuna (Our Visible Hero!)
See her speaking so eloquently on video here:
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