Usually around Thanksgiving we reflect on our surroundings, our decisions, and what we have taken for granted in our lives that deserve recognition. Or is that just me??…
And I usually shine a light on my phenomenal inner circle of friends and on my family who has gone above and beyond these past few years. But today I wanted to give the limelight to a troupe of individuals that make one mighty fist. They are often criticized, taken for granted, and never receive the praise they deserve for what they do behind the curtain. They struggle and fight for us all going through Topical Steroid Withdrawal and many don’t even know their names.
So, ITSAN members, this is for YOU.
Firstly, this non-profit group has been the back bone to making sure we are getting the word out about Red Skin Syndrome. I have sat in on multiple conference calls; I have fought by their side on Capital Hill; I have stayed in 3 board members’ homes; I have spent HOURS conversing over messenger with these renegades who are constantly championing this cause; I have toiled with them over how to fundraise to keep their efforts going for us all. THESE PEOPLE ARE SUPERHEROS.
Without an inch of doubt, I would not be where I am today without them. ITSAN has provided us all a hub of safety during our hour of need. They take on the burden to nurture us, be there for us, and answer our hundreds of questions and private messages while getting paid PENNIES for it.
I know there are many out there who have griped or complained about ITSAN on separate occasions, mostly over money and why they are so quick to censor what is spoken about in their closed group on Facebook. If you take anything away from this letter of gratitude, please take this away — they are the one IMMENSE friend we have in this fight. Everything they do is for the betterment of the cause and to protect themselves from backlash in the medical community.
When it comes to money, many want answers and for the medical community to hear us and help us, but don’t want to put the legwork in. This is where ITASN takes over. This takes THOUSANDS of hours and emotional digging. Many of the people who are board members have been through TSW, have had children go through TSW, or ARE CURRENTLY going through TSW. How in the world do we expect people to dedicate all their energy, their time, and quite frankly their sanity to the cause for no money? It’s absurd. They, too, deserve to be compensated for all the hard work they put into raising awareness. And the money isn’t just to “line their pockets.” It takes money to be a non-profit as funny as that may sound to people. A website is NOT free. Maintaining a website is NOT free. Conferences and meet ups are NOT free. Getting hands on research is NOT free. The money donated to ITSAN is to keep this precious train chugging. I guarantee you, without ITSAN, we will all disappear in a black hole. Progress will slow to a mere putt, and then who will be left to fight for us? We need ITSAN, which is why donations are so important. Just this past month, I know they had to vote on lowering their already scrap wages to ensure ITSAN stays afloat. That is heartbreaking to me. I LEAN and COUNT on ITSAN in order to make sure my documentary efforts are credible and have merit. I am a struggling suffer, almost 3 years in, and I still give.
Literally, $5 can go SUCH A LONG way. I would be ecstatic if this next week everyone who reads this gave $5 (or more!) to ITSAN and wrote on their Facebook wall, “Because I see you” – and then gave one reason why they were thankful to ITSAN. My list would be endless.
And, I also wanted to address censorship. ITSAN has to be EXTREMELY diplomatic when it comes to disseminating information and speaking to doctors. For instance, when I first came onto the Red Skin scene, I felt compelled to speak out. I was raring to go. I started making posters, I was asking for people to help create a video – I mean, all out! Very quickly, I caught the eye of Joey VanDyke and Kathy Tullos, two heads of ITSAN. Joey made it very clear that she loved my passion, but if I was going to mention ITSAN in any videos, I needed to specifically say “I am not an ITSAN affiliate.” Check out my old videos – all of them say it at the end (MY SITE). I still am a non-affiliate. Just like the Avengers, I may not be one, but I am #TeamCaptain. So, as well, I am #TeamITSAN.
At first, I really didn’t understand the big deal. I was helping the cause, right? Why such caution? Well, they had EVERY right to do that. Looking back, my amateur knowledge and understanding of this condition was small. I had the passion but not the full possession of what was really going on. So many are ready to fire bullets for the cause and go balls to the wall screaming and pointing fingers. I get it, it’s frustrating and enraging, but we have to be careful. We need to be smart. We are already perceived as crazy by many in the medical community. We don’t need to be giving them ammo to bury us. Diplomacy, research, and accurate-stimulating questions are what we need in order to reach doctors. If we can reach enough doctors who are curious and catch on to the real, horrifying issues we’ve been facing, we have a shot at making a massive impact! It only takes one – JUST ONE – person who jumps the gun to hurt the cause. We are in such a critical place in our fight that ITSAN can not have it jeopardized. To be honest, I can’t have it jeopardized either. I have a ton riding on this documentary. It is a massive burden I am carrying by taking on ALL the roles when it comes to making a documentary. Having a go-getter impulsively speak their mind without fully comprehending their actions, even if it was well-intended, can tear down progress made. So, when speaking out for the cause, triple check facts and make sure your words are dipped in accurate research and credible knowledge.
Not only that but, in the groups, certain conversations can get out of hand. ITSAN can not have people acting as medical professionals. It is one thing to share experiences since many of us are going this alone, but to state your experience as fact can be dangerous. We are all in this together and it’s phenomenal we have this medium to help one another, but let us all remember that our experience is not the same as someone else’s. Especially when it comes to infections, I am not an expert. I tell everyone to get swabbed. I understand some of us are apprehensive to see a doctor, which is the medical communities fault, not ours, but when it comes to infections, no one should rely on the suggestion of “just soak in a garlic bath”. Though a wonderful measure and can be tried and utilized, it doesn’t take the place of making sure the sufferer isn’t risking their health by not going to the doctor to get swabbed. We all must be judicious in this journey. Our brother and sisters who are suffering deserve it, and so does ITSAN.
I have nothing but love for all those on the ITSAN board. I am grateful to their efforts and their continued diligence for us all. Let us toast to them and help them continue to fight for us. I need them – you need them – and they need us.
Love, B. R. Banos