Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Monday, August 6, 2018

Disability Humility


I realize that I came up with my original informational cards when I was in a triggered state of emotional reactivity towards recent bouts of hounding, harassment, and discrimination that I had been victim of.....  The angry, judgemental, dangerous words of my haranguers would not stop rattling around in my head until I wrote down a rebuke.  My inability to provide cognitive reasoning at the time caused me to feel powerless and angry. I regained my power by writing in succinct business-card format what I would have liked to say to those people who harassed me so that next time it happened, I could "say my piece" by handing them an info-card and NOT feel even more powerless than I already do on a daily basis.
As I revise these cards, these tools of survival, I am trying to let go of the anger and instead focus on spreading awareness of invisible illness and service dogs in a way that is easier for people to hear.   Knowing that these nicely-worded cards are being created for people who are going to mistreat me in a way that causes more emotional and physical trauma to me than they will ever understand... It is a difficult thing to do.  I need help in dealing with my resentment over being disrespected or negatively reacted to simply because my daily struggles and coping tools are so severely misunderstood.   It is a bitter bone that I have been chewing on for quite some time, and its good n’ stuck in my craw in a way that's hard to get out.  
These are things I’ve known before in a logical way but I'm just now attempting to come to emotional acceptance with.  I'm just noticing how much more incredibly difficult my day-to-day life is simply based on the way people occasionally respond emotionally or defensively to those informational cards.   I am realizing that if I want strangers/public to respond in a manner that will allow my life to be easier, then I need to word myself in a way that cow-tows and bows to other people's discomforts with my disability... Even when they are breaking the law and putting my life at risk by rudely distracting my service dog.  Even when they are actively harassing me for being disabled.
This is very difficult as it requires me to let go of a certain amount of pride as well as personal boundaries that I’ve had to establish in the past regarding how I will and will not allow myself to be treated, boundaries created as I was crawling out of emotionally abusive relationships… boundaries that I had to work damn hard to build from scratch back when I was recovering from codependency and sense of worthlessness and self hatred stemming from childhood and teenage-hood and early twenties.   Boundaries that are very difficult to give up.
It's not about who's right or who's winning the fight... Sometimes you have to give up your pride and your need to be accurate or validated or on the right side of the law or medicine, because no matter what you do, you cannot control the external factors, which means that in order to survive and not only make your life easier but also reduce risk of your actions backfiring, it is imperative that you learn to let go of being right and instead “catch more flies with honey”… allow yourself to be humble… even if they don't deserve it… YOU DO. You deserve the peace and sanity that will come by sugar-coating the words in a way that will allow them to hear the message more clearly, which will result in a much stronger wave of awareness and  compassion toward your situation (and so many others) versus someone who gets pissed off at your card or triggering verbage.
I need to look at it not as giving up my boundaries but as responding and teaching in a more Zen-like fashion... I do not need an "eye for an eye"; that only creates more trauma and blindness, which I can't afford.  Instead, picture thyself channeling the detatched "turn-the-other-cheek" high-road of Gandhi, Mother Teresa, Jesus, Buddha...  Book 2 of my life is all about applying the wisdom I have gained in Book 1 of my life.  Time to step up your game, Ronni Capper!!

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