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Imagine you’re all alone, stranded on a remote island, and
surrounded by miles and miles of uncharted ocean. Here’s my question:
How much time would you let pass before giving up hope of ever being rescued?
One year? How about five years? Or are you an “I’ll never give up hope” type …
kind of like me?
To me, living with a disease such as ALS is akin
to being stranded on a remote island. And even though my rescuers are still a
long way off - - because the medical experts still don’t know the cause of
ALS or have a cure - - I’m patiently waiting and hoping.
My sense of hope gives me the strength and courage to carry
on, and sometimes I find hope in the unlikeliest places.
Clearing out
A few months ago, my husband and I began a spring-cleaning
project that focused on clearing out clothes that we agreed we’d never wear
again. That included a combination of the “gently worn and no longer fitting,”
plus items from back when we made the permanent move from Iowa to southern
Arizona.
We seriously misjudged the Arizona weather, which ranges
from hot to living-on-the-sun hot. Along with that, we overestimated the dress
code of our community, which is T-shirts, shorts, and tennis shoes (they seem
to be acceptable attire just about anywhere, day or night). So, the too-warm
and the too-fancy garments ended up in the dark depths of our closets.
Keep it or throw it?
While my husband emptied his closet of button-down shirts
and silk ties, I sat on a folding chair and sorted through my fancy belts,
fuzzy warm scarves, and sweaters that kept me warm during Iowa’s subzero
winters. Having already been through two decluttering projects, one involving
a cornucopia
of socks and the other facing my “someday-itis,”
I’ve learned that success lies in making quick, simple decisions. No lingering
or bartering allowed.
I was busy filling my second donation bag and working
through a bottom drawer of the dresser when I discovered a carefully folded,
long-sleeve top and matching skirt that brought back instant memories. I
remember wearing the stylish ensemble in Iowa while attending festive
work-related events in the evening. I always felt good wearing it and loved how
the skirt gracefully swirled when I walked across a room.
As my fingers caressed the fabric, I conjured up the magic
questions of the day: “Will I ever wear this again?” and “Why am I keeping
this?”
Immediately, a voice in my mind answered, “I saved this to
wear when my ALS finally
and miraculously went away.”
Oof … I certainly didn’t see that one coming!
The words surprised me so much that I slumped back into the chair
and took a long pause to think.
ALS islands
That’s the thing about ALS. It forces us to confront our
dreams. Was I in denial about my ALS? No, I’m a realist. I know my ALS is here
to stay. But I’ll admit to hanging onto my feelings of hope that someday I’ll
be rescued through the discovery of improved treatments or even a
cure. I think we all do.
Even though every ALS patient lives on their own ALS island,
we volunteer for clinical trials, participate in ALS fundraising events,
and reach out to each other, sharing emotional support.
We share and hold onto hope. And that’s OK.
H.O.P.E.
What did I do with that stylish top and skirt? I thanked
them for the happy memories and carefully placed them into the donation bag. I
wanted someone else to enjoy wearing them as much as I had.
Imagining the swirling and twirling made me smile.
And that gave me hope. If my clothes can be rescued, then so
can I. Meanwhile, I’ll follow Teddy Roosevelt’s advice, “Do what you can, with
what you have, where you are."
Let’s continue to help each other learn how to live well
while we live with ALS.
____________________________
FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS
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posts HERE
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| Dagmar Munn ALS Wellness Blog |
H-ave
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Macchiaco
A version of this post first appeared as my
column on the ALS News Today website.
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