I’ve pondered about how I was going to write this blog post. Usually words just hit me and I write, typo’s and all. But this, this was different. I wanted the right words. The perfect words. Ultimately I decided I need to speak the words and not just write them.
When I get passionate about anything, I let go and the words flow. The stories come fast and furious and if I’m talking, my hands start to swirl all around, or if I’m writing, the words come too fast for my hands to keep up. This time it was different but not for me as the story teller. It was for the people I met, the stories that I heard, and the lives that inevitably touched my heart. This story is about Scleroderma.
By definition, Scleroderma is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. Scleroderma is a rare disease for which there is no cure.
A week ago, I was able to attend a conference in Chicago for the Scleroderma Foundation through the company I work for. We had a booth which had two main attractions, one being face painting and the other, a make and take table. I was asked to make 600 signs for this table – 100 ready-made signs for people to grab and go, and 500 plain blocks with pre-cut vinyl words so people could make at the booth. The activity needed to be easy enough for anyone to make as some patients had limited dexterity in their fingers. So we made a few to test prior to the event and they all worked great!
And then they didn’t. We got to Chicago during one of the hottest seasons as temperatures rose above 100 degrees. What we didn’t realize nor plan for is that our boxes lay baking in the Fed Ex dock for over 24 hours which ultimately affected the pre-cut vinyl. When we finally got to the exhibit hall, we soon realized that our vinyl wasn’t working and nothing would stick as easily as it should. I remember the panic rising and the stress coming on because this product I made was essentially useless. We were on day 1 of a 3 day conference and I had 100 signs ready to go and FIVE HUNDRED that wouldn’t work and there was nothing I could do about it.
WHERE DO YOU GO FROM HERE?
That first day, the exhibit hours were only open for 4 hours, so we mainly handed out the ready made signs. If anyone wanted to attempt to make a sign back at their room they could, with a disclaimer to pop the vinyl sticker in the fridge for 20-30 minutes to see if it would unstick. I felt like crap because I truly didn’t know if that would help but Google said it should, so we tried it.
We took some back to the room that night and had a “sign making” party until midnight so that we would have some ready to hand out the next day. I remember calling Sam freaking out because of what was going on and how I was letting this group of people down.
I want you to understand for one minute how I felt. What I learned up until this point about this disease was that it caused skin tightening to the point of sometimes needing multiple surgeries. Some had lost fingers. Some could not use their hands at all. And what I gave them to make, at this point in time, was hard even for me. I was disappointed and frustrated, and then just like that it all changed the second day
WHAT I LEARNED.
I woke up in angst that morning (I also lost my voice! – I mean why not), but when I got to the exhibit floor readying myself for who-knows-what the day would bring. It all changed. I was flooded with smiling patients which I’ll now call friends. I was OVERCOME with people loving the blocks (flaws and all). Over and over, people flooded our booth gushing over the amazing signs we had for them with the lovely messages AND our awesome face painter! Lots of folks took blocks back to their friends and family. Some took them back to their support groups or patients. Some cried with me because we literally got their motto exactly right. One woman with VERY limited finger dexterity said “Nope I’m gonna make it myself” and she did. She was amazing!
These were fighters. These were warriors. The stories I heard had me in tears. Not just for what they have gone through, nor the road they still have to travel, but how they’ve adjusted their whole lives. They didn’t let Scleroderma rule their lives, they adjusted to live with the disease without letting it defeat them.
At the end of the day they were all thankful for what they have and they can look at the road ahead and still see promise. I was in awe, truly and utterly inspired by their stories they shared, the battles they’ve overcome, and the triumphs and milestones they beat on a daily basis. I could not have been more humbled or touched by this group. And they loved the signs, flaws and all!
THE LAST DAY!
We took 600 signs to the conference with us and came back with 20. One girl walked in the last day and said to me as I saw her at the entrance, “I’m thanking God you all are still here so I can get a sign everyone is carrying around.” I called Sammy that night on a very different note. Still crying, yeah well maybe bawling is more like it, but this time it was for a different reason entirely.
Scleroderma strikes without warning and today we are still trying to find a cure. The picture you see above is of me and my friend Natalie. She has had 20 surgeries in her hands and she said, “Yeah I’m doing great!” then she looked at me and said “…and guess what else… I won’t ever need a face lift!!”.
Turns out I never let anyone down but instead they lifted me up. Out of all of the people who visited us in those three days, 100% of them were grateful for the gifts they received, as I’m grateful for mine.
To those of you who read my blog I always say I hope my story resonates with you. Today I hope their stories resonate with you instead. Please check out the Scleroderma Foundation page at: