INvisible Project 2010
By Nicole Hemmingway
Heroes of Healing Community
Good evening, and welcome to the INvisible Project, a fundraiser creating chronic pain awareness through photography. My name is Nicole Hemmenway, and on behalf of CT Pain Foundation’s founder Paul Gileno, I thank you for attending tonight.
As many of you already know, nearly seventy-five million Americans deal with some type of pain. Chronic pain is an all-encompassing problem that no knows boundaries. It affects the poor and the rich, the young and the old, male and female. No race, class or age is spared from its debilitating hold.
In a sense, pain is the invisible disease. It is intangible, subjective and personal. Each person has a different level of tolerance and a personal way of defining its quality and intensity. As a result, many people with pain face judgment and ridicule, which leaves them also feeling misunderstood, alone and unheard.
Dr. Michele Gargan said it best when she stated, “This is why the INvisible Project is so important. We need to raise awareness of and appreciation for the fact that pain is a real, measurable and treatable illness that affects millions of people. We need to reach people in pain, people not in pain, and anyone who treats a person in pain.”
By making visible the experiences and challenges associated with chronic pain, the INvisible Project validates suffering while highlighting personal strength, character and courage. It shows the depths of physical and emotional angst as it magnifies perseverance, hope and resilience. Our ultimate purpose is to educate society about the toll pain has on an individual while also empowering and inspiring those who live with pain.
When asking caregivers and pain persons what the INvisible Project represented to them, these were some of the responses.
From Florida: “I have a son who is twenty-two that suffers from EDS, and there is nothing more powerful than a picture. Sometimes all the academic presentations in the world cannot illustrate human suffering better than an artistic depiction. Thank you so much for this project.” (R.S., Florida)
From New York: “INvisible Project means hope for a better future for people in pain and for the people that care about them.” (D.B., New York)
From Georgia: “Until my symptoms were literally written in my face, heard in my voice and seen in my walk, people couldn't see that invisible beast inside me… In any given day, someone in this world will meet another who suffers from the invisible disease. This is why this project is needed: so society can understand pain.” (L.N., Georgia)
Just as Martin Luther King, Jr. once said that, “Our lives begin to end the day we become silent about things that matter,” we can no longer remain silent about this public health crisis that has destroyed families and friendships, careers and livelihoods and the joy of life. Increasing awareness about chronic pain matters—it matters to the millions of Americans suffering, it matters to their families, friends and employers, and it matters to us in this room. We know: Pain affects us all.
Although September and National Pain Awareness Month has ended, the INvisible Project is determined to keep the issue of pain in the national spotlight. Chronic pain has been invisible for far too long. With the National Institute of Health’s 2006 report stating that pain affects more Americans than diabetes, heart disease and cancer combined, now is the time for all of us to do our part. We must make visible what has been ignored, undertreated, and under-funded so those living with pain finally receive recognition, validation, and most importantly, proper medical care.
It is the hope of all involved with the INvisible Project that by sharing such powerful stories of struggle and perseverance, others living with pain realize they are not alone. While we all may not have the same diagnosis or disability, the pain and emotional heartache we feel is universal.
Each of us endures the same frustration, shame and despair … just as each one of us possesses the same internal strength and desire to find answers. Recognizing there are people who care about our wellness and well-being allows us to move forward another day. It allows us to continue to believe in the unimaginable.
I truly believe being able to positively affect another person's life is the greatest gift anyone can give. And WE, in this room, have that power. Please spend time viewing each participants' photographs and stories. Ask many questions. It is our intention that we all go home tonight with a better understanding regarding pain issues so we know what must happen in order to effectively affect change.
Again, I want to thank all of you for standing up and speaking out against the injustices the pain community faces. By being here tonight, you are helping lead the way so future Americans do not have to endure what many of us in this room have had to go through. One hundred percent of the raised proceeds will directly fund future chronic pain research as well as build new support structures, educational programs and aid in hands-on advocacy efforts.
To the medical professionals here this evening ... I humbly thank you for your unwavering support and genuine concern for our health. You have dedicated much time and energy to our healing processes, and I thank you for not viewing us as case studies or subjects; but rather, as individuals desperately searching for answers and normalcy.
I would also like to extend a big, heartfelt thank you to our sponsors—PriCara, Purdue, PainPathways Magazine and RSDSA—and the organizations and groups who are here to show support and share much-needed information about resources available to help those with pain. These wonderful groups have helped our INvisible participants along their own journeys, and are also committed to making a difference in the pain community. We thank you for your participation, endorsement and collaboration on this chronic pain photography exhibition. We know it is by coming together that our voices become louder. We know: Together, we can accomplish anything.
Finally, I want to applaud our ten brave participants: Karin Boyce, Stephen Brilliant, Denise Coleman, Wendy Foster, Bianca Henriquez, Edania Maldonado, Kelly Rouba, Ellen Smith, Marsha Tyszler and Heriberto Vidro. You are the reason we are all here to tonight, and I am in awe of you. I personally know how frightening it is to share your life story, and I admire your honesty, candidness and willingness to help others. Having been able to spend time with each of you has had a profound affect on me. Not only has it been privilege for me to learn your story with pain, but more importantly, it has been a pleasure to get to know you as the inspiring, amazing, kind individuals that you are. Thank you for being part of this project to raise awareness and appreciation for chronic pain. You are all my heroes.
I would like to end with a quote from one of our INvisible participants:
“To have a campaign that visually shows our invisible disability while striving to convey the message that it is possible to live positive and fulfilling lives is just what the pain community needs. I have high hopes that the INvisible Project will meet its goal to create chronic pain awareness, empower survivors and generate change. It is an honor to be part of the INvisible Project.”
Thank you … and please enjoy the rest of the evening.