ALS: Beliefs about the soul

Trying to function without being able to speak or eat is painful to share with others who haven’t seen me in a while. I even feel apologetic toward our corgi Isaac who stares at me while I’m using the cough assist machine to dredge up mucus. I wished I could converse with each person as they arrived at the front door.

I felt so happy that 13 members of my extended family came to my Easter birthday party, including my 1.5 year old grandnephew Luca. I picked out three beanie babies he could play with, but wished I could start speaking for each of them to initiate a game with a little black cat, a bunny, and a tiger.

I had summoned my energy to lead a focus group on what happens to our soul when we pass on. How is it we could each live a lifetime (the rest of us, ages 32-79) and never discuss what we personally believe on this subject? I love what my friend Vicky shared about the Lakota:

“The Lakota I know don't talk about dying. They talk about walking on to the Spirit World. So and so began her journey to the Spirit World last week. So and so walked on to the Spirit World yesterday.

They draw a circle, divided into 4 quadrants, each one corresponding to our stage in life. We are all in the last quadrant, meaning that we are on our journey back, no matter what we think...”

Hope dawns

On this Easter Sunday, when the wind died down a bit, we opened our new awning on the back deck where everyone sat in a circle. We heard how people view their soul. Here are four themes articulated in the group discussion:

Body and soul are separate entities.

The body is earthbound. Your life experiences enter into the soul, evolving over a lifetime. After the body gives out, the soul lives on through your impact on others.

The energy of the soul lives on.

As you influence people whose lives you have touched, the flame keeps burning.

The soul is a divine spark that is Godlike and lives on.

We might need to come back.

We work to become better people. Our souls continue to be reborn until they learn all the lessons needed, with much about loving one another. The worst things that happen to us are there to teach us. We can accept being taught at the Kindergarten, High School, College level, or beyond.

We move on, freed.

Life is eternal. We need to make peace with things constantly changing, and take things as they come.

To give people time to think, one family member recalled from The White Lotus series on HBO when a Buddhist monk said, “We are a single drop of water separated from the ocean; we will become one with the ocean again, no longer separated.” Isaac barked through the whole discussion causing me to lose patience and give up on pursuing some of the smaller threads.

Moving on to my week like none other:

In our Hyde Park Racial Equity Book Group, we are getting to know each other’s struggles to be authentic in our families of origin. I typed in chat about our wedding in our Hyde Park yard in 2004. One Black member spoke of her brother who was gay but never acknowledged in the family. Two days later, Martha recalled while planting dahlias in our yard that the Victorian tent we had for our 2004 wedding looked tall and mighty.

The ALS Support Group this week discussed how to tell the grandchildren what’s wrong with you—don’t say “I’m sick” but “my voice or legs aren’t working.” Then the discussion focused on finding the right mask for one’s BIPAP machine. People are maintaining being mobile by custom-fitting these machines to their preferences.

A Voice technology webinar included an Oklahoma chaplain who cloned her voice and inspired us with the clarity of her words.

I received a half-hour appointment funded by CCALS with Dr. Richard Bedlack of Duke University on Zoom. He pointed out four red flags with the Chinese herb protocol: these included seeing no peer-reviewed publications, never seeing the head doctor at scientific meetings, offering nothing being measured after taking the herbs using the functional rating scale, and saying everything is “perfectly safe” without citing any adverse events, although it’s been shown that herbs sometimes include high amounts of lead, mercury, arsenic that the FDA is not measuring. I will now focus instead on the recommendation I received on the call: to try a week’s regimen of three times a day nebulizer, cough assist, suction machine, and if mucus doesn’t stabilize, then I’ll try a stronger med in my nebulizer if my doctor approves.

Planting 40 dahlia tubers with Martha and my ex-husband Jamie, I felt how miraculous to be doing this, when in the fall, I questioned whether I would survive the winter. Ten more tubers are in pots in the basement, my science project to see who does best before Mother’s Day.

My healing conundrum: hope comes from my willingness to take risks and I took many this week. Hope also comes from Dr. Bedlack pointing out that my earliest symptoms (swallowing difficulties in 2019) suggest that I’m a slow progressor, and that is a good thing for predicting my future. My ALS Function survey scores show I lost only 3 points in 6 months which is half the normal progression rate.