Opening Words from Sun. January 14 by Jim Jordan

H.P. Lovecraft was right when he said, “The oldest and strongest emotion is fear.” Our capacity to process fear lies in the amygdala, an almond size mass in the brain. It is responsible for detecting fear and preparing for emergency events. For some people, their biggest fear may be death. For others, it may be public speaking. But I posit that possibly the biggest fear is caring for a loved one whose health or wellbeing is declining, is in the later stages of dementia, has been in a terrible accident, or winds up being intubated because of pneumonia.

Almost a decade ago I had the opportunity to hear Rick Raider, Exec Director of Exceptional Parenting. He delivered a powerful and thought-provoking talk and I was lucky enough to receive a transcript that I go back and reread from time to time. It was titled, “Now Fear This: The Mythology of Mission Accomplished.” In it he presented the 30 F’ing Fears that we of the disability community must heed. It dealt with complacency and accepting what should be viewed as the unacceptable. It dealt with achieving the highest quality of life possible for our children and loved ones. It dealt with striving for justice for all. We were challenged to safeguard those that are the invisible, the forgotten, and the most vulnerable in our society. BUT, it pertains to everyone who advocates for equity and equality for all. It was a call to action–30 Actions!

Today I would like to present three of those F’ing Fears.

Fear of FETAL POSITIONS. Fear finding your friend, loved one, or client in a fetal position or any position that signifies to you, and very often only to you, that something is terribly wrong. Fear finding them in a position that suggests regression, decompensation and deterioration. Fear not seeing the steps leading up to this, fear not realizing that something was changing, something was getting derailed. Fear other people, seeing the same position, and not appreciating that all is not well. Fear your own commitment, your own awareness and your own vigilance finding its way into its own fetal position and not acting. Fear feeling comfortable there.

Many times, people ask me how I know something is wrong with Aidan. They cannot tell by looking at him. I joke and say we did the Vulcan Mind Meld. But it extends beyond that and I fear most that Aidan will experience Failure to Thrive. I also fear my own inaction being caused by freezing up. I bet I am not the only one who became so overwhelmed with circumstances, that it was more comfortable to throw my hands up and just accept fate. But eventually, something always happens that changes the comfortable to uncomfortable and demands action.

Fear of FEATHER RUFFLING. When we stop ruffling feathers, we stop appreciating what feathers can do if they’re coordinated, orchestrated and synchronous. Feathers need to be spread, they need to be groomed and they need to be ready to get us off the ground. Sometimes off the ground is where we need to be; sometimes it’s the best place to see the big picture, to see the best place for a nest and the best place to dig up a worm. So, fear not wanting to ruffle feathers; especially when we can’t always flock together.

When Aidan was hospitalized this past October for 8-days, he was seen by a new doc, a pulmonologist. This pulmonologist was experienced and wise and looked at the big picture. He was also the husband of a Pediatric ICU attending doctor who has had Aidan several times. When he mentioned Aidan was a new patient, she replied “Everybody knows Jim!”

Since Aidan has vacationed more than a year of his life at Club Children’s Hospital, could I have ruffled a few feathers? Were feathers in need of being ruffled? Rearranged? Well, yes—guilty as charged. But how have I ruffled feathers? Was I a PAPA BEAR Protecting his offspring and ready to do battle? Was I an active listener, who tried to understand before engaging in productive dialog? Was I the historian, who brought to the table past outcomes and evidence? Was I a pissed off science educator who couldn’t believe that the team was not basing decisions on evidence and past trials. I must admit—all of the above at one time or another.

What is the best way to get the results sought after? How do we calm ourselves in those over the top, stressed out times when you are exhausted? When you want to be enjoying fine food and drink with friends instead of trapped in a small hospital room? I am still working on an answer to that. But I am much more aware of how I react and interact. So now, maybe Everybody knows Jim for a good reason, most of the time.

Fear of FLOW CHARTS. Fear anything that implies that people flow PERIOD! Flowcharts are great for tracking products, manufacturing goods and even decisions. When it comes to planning programs, activities and lifestyles for any individual, except army recruits, fear anything that begins with a square followed by an arrow on or near the top of the page. Flowcharts imply predictability, they imply conformity, and they imply compliance. Things only flow downhill…….fear any proposal that suggests a downward slide being the most favorable direction for another person.

I have discovered flow charts come in many forms. IEP’s, Therapy programs as dictated by insurance. Heck, any medical plan dictated by insurance. Policies, hastily put together, for a group of people. How can you lump Aidan in a group of typically developed people? I remember when as a 9th grader, the alternative state achievement tests changed. On the history test, Aidan was asked which of the following 4 choices was the answer to why the thirteen colonies decided to break away from British rule and declare sovereignty. Accommodations were made. The question was read orally, and he was to nod his head when the correct answer was read to him. I am guessing he got 25% right.

Too often the easy way for a teacher, therapist, doctor to view and develop a plan for a person declining, is to just accept that the decline is inevitable and why expend the effort? Might I suggest providing the highest quality of life that is reasonable for the resources available? My dad, as care provider for my mom when she was struggling with Alzheimer’s, experienced this at a number of residential facilities. I have experienced this with physical and occupational therapists assigned to Aidan. Individuals need an individualized plan that is developed from a person centered, bottoms up approach.

Sometimes after you have acted, you must quiet your fears with Trust. I find comfort in the song by Bill Stains, Quiet Faith of Man. The following is the chorus.

You can trust the moon to move the mighty ocean
You can trust the sun to shine upon the land
You take the little that you know, and you do the best you can.
Then you save the rest for the quiet faith of man and woman.

NOTE: The ideas and opinions in this post do not necessarily express the thoughts or opinions of the Ethical Society of St. Louis or its leadership.