Monday, May 26, 2014

National Scleroderma Awareness Month

“Don't be too timid and squeamish about your actions. All life is an experiment. The more experiments you make the better.” -Ralph Waldo Emerson

It has been 8 months since I last wrote on this blog. About a month ago I took part in a 28 Day Blogging Challenge on my personal website, which was a ton of fun but got "cut" short thanks to my fingertip amputation (pun intended). But, with National Scleroderma Awareness month (June) just around the corner, I've decided it's time to return here and embark on a new journey/experiment.

The last 8 months have taken their toll on me both physically and emotionally but I have learned a lot and have a new respect and understanding for what it means to live with this terrible disease. I have lost the tip of a finger (which is still healing-very slowly), experienced endless nights of chronic pain, and have learned to adapt to living with limited use of my dominant right hand. I have had dark days and nights. I have been angry at God and myself. I have been depressed and at times suicidal. (I would never actually go through with it because I'm too scared I would fail and it would all hurt- Lupe laughs at me when I tell him this- though it's no laughing matter.) (#truth) But it is the belief and knowledge that all this pain HAS to serve a greater purpose, that I serve a greater purpose that keeps me going.

I have a talent and an ability and a desire to write. It is this writing/blogging/sharing that enables me to withstand the pain and the sadness. I have a story to tell and that story is not over.

So, with that in mind and because I have finally decided to challenge the status quo, I am embarking on a social (media) experiment. This could fail miserably. It could blow up in my face and I will probably piss off a lot of people. OR I could make people angry and still make a statement- after all isn't that what most great thinkers and leaders did (MLK/Jesus/Chavez)? Regardless of who it may offend, I feel it has to be done.

Over the next month I will create memes/pictures asking for "likes." Each pic/meme will address a scleroderma related symptom or issue we patients face on a daily basis. (ie. How many likes can I get for a missing finger tip?) Does this seem morbid? Yes. Does it seem cynical? Perhaps. But I want to raise awareness. I want to talk about and share those things that others can't or don't want to talk about. This idea was spurned by all the "I'm cancer free- how many likes can I get?" photos and memes that plague my Facebook feed everyday. Am I proud of those cancer patients and kids that beat cancer? Of course! I admire anyone that struggles with ANY illness and is able to overcome the challenges that come with it. But does it kind of make me angry that cancer patients are the only ones that seem to get any attention or credit? DAMN RIGHT.

When someone gets diagnosed with cancer, they wear it like a badge of honor -especially if it's at a stage where they can beat it. When someone gets diagnosed with an auto-immune disease they hide it even from their loved ones at times and don't talk about it. I think that's wrong and I want to change the stigma that comes with having these diseases. I want just as many people wearing teal as pink. I want thousands of people to walk with me like they walk for breast cancer.

I will NEVER "beat" scleroderma. And that is the truth. So how many "likes" can I get for simply living with and managing my disease?

That is what I wonder. That is my experiment. How far will these memes/pics go? How many likes will I get over the course of one month? Will any photo go viral? Who will notice? Who will care?

Some photos will make you uncomfortable. They're meant to. Some facts will shock you. That's ok too. Because in the end, this is my truth. My story. And I am not ashamed of it. Too often we hide our chronic illness and pain, fearing it makes us weak in the eyes of others, when the truth is it only makes us stronger.

My goal is not to belittle cancer patients and their struggle. I want to simply bring awareness to an illness that is just as damaging, painful and threatening as any cancer out there, and perhaps even more so because the pills we take to manage the disease can cause cancer (double whammy!). So, with that said- that is my only disclaimer and my only "non-apology" for if I offend you or someone you know.

It's time to stop acting like these diseases don't matter because it only affects a small population of people. It's time to stop being ashamed of our pain and our disabilities. It's time to raise awareness, raise eyebrows and raise up.

Look forward to the first meme/photo coming June 1st!