I Don’t Want to Be a One Hit Wonder!
Click here to learn how to participate in “Face Off For Scleroderma.”
Don’t Let “Face Off For Scleroderma” Become a Macarena!
16 days ago, you helped me launch “Face Off For Scleroderma,” a campaign that was born after the Facebook Ad Team told me the image below would, “draw high negative feedback.” You can read about the whole saga here.
My story and campaign seems to resonate with many people world-wide, as evidenced by all the media attention it has received around the globe. Click here to see what I mean. In order to keep this campaign alive, please read the speech I gave live at our launch event. Then, share, take the challenge, and NOMINATE 4 people (by tagging them)- in honor of the over 400.000 people suffering from scleroderma. If you’ve already participated, please consider doing “Face Off For Scleroderma” again and nominating new people. Click here for the simple participation directions.
On August 9th, I left my home without makeup for the first time in 28 years. Read the speech I delivered to learn why I did it.
If I had known the face I’ve been desperately trying to conceal for 28 years would have done this much to elevate Scleroderma awareness, I would have gone bare and beautiful years ago! I can’t tell you how much I appreciate the love and support I’ve received since the entire Facebook Fiasco began. Those of you who have read my blog, know that I typically end each post with some amusing disclaimers. In honor of the “Face Off For Scleroderma” launch, I’m departing from my usual format, and giving you my disclaimers first.
#1- I’m not going to rehash the whole story about Facebook rejecting my face. The fact that you are here means you know what took place. Suffice it to say, my intention is not to wage a war against Facebook. Rather, I want to use what happened as a launching pad to use social media for what it was intended- spreading messages globally.
#2- I want to remind everyone that Scleroderma is a chronic autoimmune disease which impacts patients in drastically different ways. This is the message I was trying to convey when writing the original blog post that started it all: “You Won’t Believe the Story Behind These Two Faces.” The red and purple spots I have on my face and all over the rest of my body are called telangiectasia. Many scleroderma patients do not have these, but are impacted in ways far worse (multiple organ failure that can be fatal). The whole point of this campaign is to spread awareness about scleroderma, so please continue to read my blog and share it with your friends and family. There is also a link on my blog that will take you to Chanel White’s blog –The Tube Fed Wife. She is the other face in the picture that has inspired this movement. Chanel is a 23 year-old scleroderma patient facing multiple organ failure. Chanel, and many other scleroderma warriors, would trade places with me in a heartbeat. It is for them that I ask for your support in launching this campaign.
#3- I’m here to tell my personal story because I believe that in our digitalized automated world, it’s harder to get to know people, I mean really get to know them, face-to-face. As I share my life experiences and medical journey with you, it’s important to note that my story is extremely unusual, and my near-death experiences during my 218-day hospital stay was not necessarily caused by scleroderma, although my scleroderma certainly masked other symptoms and contributed to complications.
#4- I’m purposely going to try not to mention people by name, but please know that I would not be standing before you today, had it not been for the hundreds of friends,family and healthcare professionals who rallied around me to save my life in 2006. That same support system has carried me through darkness time and time again, and without them, my Facebook Fiasco story would never have been widely shared.
#5 Yes, this is where I get to add my shameless plug! If you are interested in learning more about why I was hospitalized for over 7 months, please buy my book, Does This Hospital Gown Come With Sequins? which is up now on Amazon. I will be donating a portion of all book sales to the SRF and SF.
As I mentioned, the primary focus of FACE OFF FOR SCLERODERMA is to bring awareness and funding for scleroderma. But I believe this campaign can shed light on many different issues that are universal struggles for so many of us.
One challenge that has come up a lot for me in my life is the notion that we can’t allow others to discourage us, or lead us to believe that our dream is an impossibility. When I suffered from grave medical complications in 2006, I was taken in for exploratory surgery and ended up having an emergency colectomy. The doctors told my family my chances for survival were slim, and I most definitely would not wake up for at least 48 hours, due to the heavy sedation I was under. The next morning (less than 12 hours post-op) I woke up to discover I was intubated and couldn’t speak. I banged wildly on the ICU bed rails to get the attention of the nurses, who could not understand how I could possibly be awake.
As I remained motionless in an ICU bed for months, I slowly became so deconditioned that I was essentially paralyzed from the neck down. I was told I may never walk again, and if I did, it would only be with an assisted device like a walker or cane. While in the hospital, I didn’t eat/drink for over 4 months and was informed if I did make it out, I would probably need to be on TPN (an alternative source of nourishment), for the rest of my life. During my illness, I had a tracheotomy placed in my throat to help me breathe. Doctors said that I would probably need it for the rest of my life. But here I am today with no tracheotomy, no walker, no cane, and no bag of TPN , hoping that I win the Carol’s Cookies basket from the raffle. The universal message here is: Don’t underestimate the strength of the human spirit, the power of love and support, or the notion that your life adds value to the universe and is always worth fighting for.
Another hurdle I’ve faced in life is allowing others to make me feel powerless and accuse them of stifling my voice. I was literally robbed of my voice for many months due to a tracheotomy that prevented me from speaking. After my remarkable recovery, I slowly discovered that no one can steal your voice from you, unless you let them. We don’t need to wait for someone else to speak out on our behalf. Let’s use our most powerful tool, our voice, to bring about positive change and action.
I’m sure it’s pretty obvious that I’ve struggled with my outward appearance for most of my life. You’ll notice I’m wearing my Lululemon headband and Lululemon yoga pants so I know it’s all good! That’s a shameless plug for my article, “The Lure of the Lulu” that you can all read on the Huffington Post. It’s been very hard to deal with stares, questioning eyes, and lingering glances since the age of ten. Much of how others perceive us is based on first impressions, which are heavily rooted in how we look. I know this campaign won’t change that. But, I’m hoping it will inspire people to look past first impressions and ask themselves this question, “So What?” So what if I’m meeting Lisa Goodman-Helfand for the first time and notice she has red spots all over, bony hands, and strange contracted arms?” What does that really tell me about who she is as a person, especially on the inside? Is appearance important in society? Of course it is and I’m not naïve enough to think otherwise. But let’s not let the reflection in the mirror define our self-worth, self-esteem, or what we have to offer the world. We also need to ask ourselves, “So What?” when we look in the mirror and not be so hard on ourselves. There is no such thing as perfection. I hope this campaign will inspire others to stop chasing something that doesn’t exist.
Throughout my life, I’ve tried to view my circumstances and the world with optimism. Don’t get me wrong, there have been many times where I have succumbed to negativity, depression and rage in regards to my illness and other personal obstacles I’ve faced. Yet, I’ve always tried to cling to the philosophy that there are more good people than bad, more kindness than cruelty, and more compassion than animosity. I’ve seen a lot of this lately as my story has unfolded. I was terrified to post my naked face on my blog and what a blow to then receive a response telling me this image (my face) would receive “high negative feedback.” In the over 600 shares that one article garnered, I didn’t receive a single negative comment about my face. When I wrote my second blog on the topic, following Facebook’s auto-rejection, I honestly shared how I had reacted and was expecting some nasty comments about how I was just a big crybaby. I received no such comments. The support I’ve been given has renewed my faith in humanity.
Today’s the day we lead by example. The day that we prove there is more good in the world than bad and demonstrate the importance of acceptance vs. rejection and embracing vs. shunning. I am thrilled you are here with me to launch “Face Off For Scleroderma.” Help me show the world that we can take a negative experience and turn it into something epic!
In true form, I must end my speech with a disclaimer:
I am not against technology. Even though I’m a true Gen-Exer, the last generation that didn’t grow up in a digital society, the last generation that will ever remember sitting by their radios with a tape recorder waiting for their favorite song to come on so they could record it for their mix tape, the last generation that will ever go to college and need to make Xerox copies from a bound book for their research project…..I could go on all day, but we have a campaign to launch.
So, while I embrace technology and all the wonders it has brought to us, I feel it is essential that we teach our children that devices don’t replace people, that data doesn’t tell someone’s story, and that technology is a tool to use in life, not a means to live your life. The best way to get to know someone for who they are still lies in actually talking to them face-to-face. This is the original message I intended on sending when I wrote the story about my face and the beautiful face of Chanel White. Thanks for helping me spread it around the world.