I’m giving a presentation ( 3 presentations in one week actually) about my work to a large group of teens at the top of April. I’ve done presentations for teens many times before, but I’ve been asked to talk about my life and career from a more personal/health perspective. I’ve been thinking about how to explain RA. How do you explain the emotional hits you take for something that’s merely physically altering? I’m pondering how I’ll mention the difference between thoughts of suicide vs. having a disease that’s known to kill you faster than others? Also, how do you balance that with being no different than the odds of an accident dropping you to your knees and the end of this life as we know it. How do you mention that you’re certain there’s life of some kind beyond this one because I’ve left my body on a few occasions when my body was going into near-death shock from pancreatic attacks (acute pancreatitis)? How do you explain that none of these defines me as a creative successful person?
Some would say that the facts point to a lack of success in my life: no kids, no marriage, no Mercedes, no property ownership. But I guarantee that my bumpy road journey will have been far more mind-boggling and interesting than most peoples. As a side note I do run my own company and have created vast amounts of great work in my career.
Perhaps I’ll simply state that I have this disease, this is what it does medically, emotionally it can be exhausting and physically it can be a show-stopper – but it’s also a freedom. Yes – I said a freedom. How? Easy. RA enables me to speak up for myself when I would let my client determine the next steps. RA allows me to make boundaries without guilt. RA allows me to say NO – I’m not going to be doing that this evening. RA reminds me to stop working and go to sleep. RA reminds me to get some exercise and that I’ll actually feel better afterwards. RA creates a bond with other RA sufferers and in fact, other disease sufferers and caretakers worldwide.
RA gives me a zillion other freedoms but I dont need to list anymore of them now.
Running naked and free: Sasha