WesElyMD Profile picture
Husband & Dad. ICU Doc. Vanderbilt. @CIBScenter studies Covid & Long Covid, ICU Survivorship, PICS, Dementia, Delirium. Tweets my own. Still learning.

Feb 28, 2022, 16 tweets

1/🧵 Are you happy?

My brother w #DownSyndrome is teaching me tons of life lessons.

In medicine & in life, I make big decisions based on guesstimates of other’s Quality of Life #QOL.

I often GET IT WRONG!
 
What do adults w #disability teach me about TRUTH?

Can I learn?

2/🎥 How do we “calculate” someone’s #QOL?
 
#Confession: I get it all wrong when I impose MY judgment onto THEIR life.
 
Greg, my 57 y/o brother-in-law with Down Syndrome, has a better QOL than I do.

Why?

Digest this…read on…
 
#DownSyndromeLove

3/ My working definition of QOL is “the ability to give & receive love.”

REREAD THAT👆

Greg understands the Law of the Gift: Treasures GROW when we give them away.

It’s the opposite of hoarding.

Yet, giving ourselves to others can be SCARY. Greg ponders deeply these emotions.

4/ As Greg’s new “dad,” I have watched a pattern in his life.

Every day, Greg starts out afraid. He says, “Wesley, I scared.”

We talk about why & then we slow down & take life one moment at a time…

For Greg it’s very important NOT to jump ahead or skip steps.

#TheLuckyFew

5/ Yesterday, while eating waffles, Greg saw me making his lunch. I was being efficient. Greg threw a fit.

It totally messed him up because it meant I was rushing to the next thing without enjoying the present moment.

He NEEDS to absorb EVERY portion of NOW. Why?

#UpSyndrome

6/🎥 When Greg can relish exactly where he is & what he’s doing, all is right in the world.
 
Dancing to THIS song.
Eating THIS donut.
Petting THIS dog.
Looking at THIS snow.
Telling ME he loves me.
 
For Greg, this is what he wants in life. NOW matters most.
 
#DifferentNotLess

7/🎥 In contrast, what do I do?
 
While steamy waffles are on my plate, I worry about a meeting or a challenging person I’ll see in 3 hours. I review data I need for a patient’s #COVID treatment.
 
I cheat NOW of JOY.

Instead Greg finds #Hope in belief…watch👇
 
#T21 #MedLasso

8/ Back to #QualityOfLife.
 
If QOL is the ability to give and receive love, then Greg is teaching me a #MasterClass.
 
I am at the foot of Picasso‼️
 
So what about his fear at the start of each day?
 
What can I learn from him about FEAR?
 
#FindYourTribe

9/ He starts out anxious…but day after day, I watch what happens.
 
As he takes each moment for what it is, and only for that, his day unfolds with beauty & #grace.
 
He dances at the YMCA. He makes some art. He hugs a friend. He jokes with others to make them laugh.

10/ The most beautiful lesson of all comes from the pure love I witness between Greg & his sister, my wife. There’s a love of complete giving.

Reckless abandon.

They show me that I can tumble into offering myself to another and gain immeasurable riches: the law of the gift! 🎁

11/ Do you know about the “QOL Gap”?

Data show that if someone’s “expected vs actual” QOL are close, there’s a narrow QOL Gap, & they are happy. If they EXPECT something different than they get (large gap), they’re unhappy. It’s all about expectations.

bit.ly/3BRZ48w

12/ Resentment come from unmet expectations.
 
Greg & “philosopher” Michael J. Fox (severe Parkinson’s) @realmikefox teach me that happiness increases if I ⬆️ my acceptance and ⬇️ my expectations.
 
Fox: “Gratitude makes optimism sustainable. Keep striving for gratefulness.”

13/ This last point is proving helpful in #LongCOVID.
 
Using ACT – Acceptance & Commitment Therapy - we are all learning how to maintain a NARROW QOL GAP, maximize gratefulness, and boost happiness while we wait for more science & answers.
 
LINK: bit.ly/3pkJblL

14/ Greg’s ability to accept life on life’s terms is remarkable. 🔑

Acceptance is the answer to so many problems. When I’m disturbed, it’s usually because I find a person, place, thing, or situation unacceptable. I can find no serenity until I accept.

Greg models this.

15/ What’s the Gold of Greg's MasterClass?
 
Happiness is not “all or none.”

I’ll dive into the deeps of personal change & do the work to increase my capacity to give & receive love…increasing my quality of life through acceptance of what is.

Taking life on life’s terms.

16/fin
When I pick up Greg @FriendsLifeNash, as we’re driving home, he invariably gets a little quiet…thinks…and says to me, “Wesley, I had a good day today. D’ya wanna go on a honeymoon?”
 
And I realize, “Greg, you and I, in this moment…we ARE on a honeymoon!”
 
#Cherish

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