Infusing Love: Naughty or Nice – It’s a Choice

One of my co-workers often uses the phrase unconscious incompetence. It essentially means you just don’t know what you don’t know.
The recent election surprised many. I’ll stay away from the politics but I can’t help but reflect on the flippant comments made by a constitutional law professor post-election who referred to those who were expressing alarm at the election results by saying they were, “acting like a bunch of emotional hemophiliacs.” It is perhaps the best example of unconscious incompetence I’ve ever seen and I’ll admit, as a Momma Bear, it ruffled me. I wish I could meet this law professor for a cup of coffee and some heart to heart conversation. Better yet, I wish he could live a day in the life of the reality of living and surviving with a bleeding disorder.
I’d like him to meet a sweet and courageous little girl named Kinsey and her Daddy who live in the Midwest as they courageously tackle regular needle stick infusions to manage her vonWillebrand Disease. I’d like him to meet Murali, a stoic and gentle man who grew up in India without ANY treatment and spent years managing excruciating bleeds without treatment and lives today with a bum knee and pain he quietly endures. I’d like him to meet my Benny, who still struggles with needle sticks but bravely knows the alternative is the agonizing pain of a knee or hip bleed. I’d like him to meet Lori, who is a super mom who is always on top of her son’s bleeding disorder needs, but often lets her own go, causing joint damage and pain. I’d like him to meet Michael who is allergic to treatment and has an inhibitor that won’t tolerize yet he got himself through high school and college and all he wants is to be productive and have a regular job.
We’re a tough bunch. We’ve endured as much as any group and lost more than our hearts can bear, but I honestly don’t know anyone in our community who has given up fighting for the needs of our families.
Darn right we’re a bunch of hemophiliacs, vWD, and other rare bleeding disorders. We’ve dealt with cards no one should have to have dealt and we will not only endure, we’re going to prosper.
It seems to be more culturally acceptable today than ever before to make insulting or derogatory comments toward others, particularly to people we don’t really know. My husband and I struggle continually to educate and remind our kids that it is a choice to do this and not a good choice.
Perhaps in the spirit of this holiday season, we can all reach back to that place of honor, respect, and dignity. I was recently invited to San Francisco to be a part of a group accepting the Unsung Hero award at the AIDS Grove during World AIDS Day (December 1) with Jeanie White, COTT, and NHF. It was a lovely event filled with respect and honor. The AIDS Grove is a place of remembrance.
I hope you’ll join me in the coming weeks to take a few minutes of reflection and be consciously competent! Think about the adult men and their families who have given so much to endure the years of hemophilia and perhaps the dark days of the 1980’s and 1990’s. Remember inhibitor families living today who struggle, new families just being diagnosed this year with so much to learn, and families who have loved and lost.
My grandmother used to say, “You only get what you can handle.” Let’s choose to be consciously competent and listen, love, teach, and advocate this coming year. Together we can bring to an end those unconsciously incompetent comments made.
Thank you and whatever you celebrate, happy holiday season.