Wednesday, October 19, 2022

Adapting



Have you ever stumbled on a wooded path in autumn?  The brightly colored leaves begin to obscure the well-worn trail, and the abundant acorns act like mini-rollers underfoot, making conditions ripe for an awkward misstep.

I went down today; tumbled right off the path.  The fall came as a complete surprise.  I was using my new, high-tech walking stick.  I was walking slowly with Delta leading the way along a path we have traversed almost daily for more than 20 years. My left foot caught the edge of a small twig poking up from the leaves, and I stumbled without the reflexes to autocorrect.

I fell in slow motion.  As I rolled downhill into the underbrush, I actually had plenty of time to hear Peggy gasp behind me.  

Ordinarily we can chuckle about these gaffs.  Today, it scared us, because the fall came out of the blue.  The good news is that I landed fine, even though I launched off the trail in an uncontrolled free-fall.  

Once Peggy got me righted, our hike continued without further surprises, but the mood had changed.  The sunset seemed more solemn.

Life with ALS brings constant change.  Like parenthood in its earliest stages, ALS presents new challenges almost daily.  Just when you have almost mastered the last skill or adaptation, there is a new one at your threshold.

This past month has brought a whirlwind of adaptation to the Plews-Ogan household.

I no longer carry anything that requires the strength of two arms. (The lamb stew careening across the kitchen floor ended that, much to Delta's delight.) I need to rest between activities that require effort, like watering the garden.  I routinely use a walking stick outside, and I pace myself throughout the day.  It's best if I type in bursts of 20-30 minutes.  And, we have started major home renovations to create a handicapped accessible bathroom and bedroom on the first floor.

Gratefully, the Hummingbird Fund also presents new challenges and opportunities:  

  • We will soon award our first grant to expand access for modular ramps to families facing this necessary transition for wheelchair access.  
  • We are entering exciting partnerships with local, regional, and national ALS organizations to advance research and advocacy.  
  • This blog, Offering Kindness, and the Fund's social media accounts have brought many newly diagnosed folks and their families to us for advice and council on integrating ALS into their lives.
As Peggy and I endeavor to integrate ALS into our own lives, we continue to be buoyed and inspired by the love of family, friends, and the ALS community.

I'll leave you with this choral work by RenĂ© Clausen performed recently by our church choir.  The choir at St. Paul's Memorial Episcopal Church continues to be at the center of our community of love.

Set Me As A Seal

(by René Clausen, from Song of Solomon}

Set me as a seal upon your heart

As a seal upon your arm

For love is strong as death.

Many waters cannot quench love

Neither can the floods drown it.

Set me as a seal upon your heart

As a seal upon your arm

For love is strong as death.

Listen to St. Paul's Memorial Church Choir

(minutes 25-28)