Been going through my mom’s things. Tax season doesn’t stop for
death so I had one last bit of paperwork to find. Mom wasn’t a fan
of paperwork so it took a little hunting - found it in the end
But found other things along the way. It was sometime during this
month five years ago that she first felt symptoms of MND. A weakness
in her right hand. And while going through things I came across
several reminders of her journey.
She had a small collection of things to strengthen her hand. Some
she had me get for her, some I guess she found elsewhere. They were
in the bottoms of drawers, their function long past her abilities
even for her left hand.
There were pages and post-its with her writing; slowly degrading.
She eventually learned to write with her left hand, though by then
even that hand was wasting away.
I noticed the electric toothbrush over her mirror in her bathroom.
I suspect an early attempt to address her hand weakness. It’s unused
from my glance at it. My mom was open to tech, but she grew up in
rural 1940s Ireland. She would at times need help. I can’t recall
her asking for it. Pride? Denial? Frustration? Who wants to see
their hand waste away; ask their child how to use a toothbrush?
As she fought to keep and make use of her arms the MND was destroying
muscles we couldn’t see. The muscles in her core; the muscles that
made her lungs work. This picture is part of the last stage of that.
We got a dense nutrition supplement. As the muscles that drive your
lungs die, you’re more affected by a full stomach. As more of those
muscles die, you’re more affected by a half-full stomach. Eventually
it becomes hard to eat and breathe. Each pack had six bottles and
two little cups. Which means each cup represents three to five days.
I can’t remember when it started, but this picture seems to show
she was on that regime for four to six months. And every day a
growing portion of her daily calories came from it. Early on she
complained about the taste but she made herself like it. Without
calories you can’t live and she knew that was increasingly the only
way to get them.
She knew what MND was; she was a nurse with 40 years experience.
She knew the outcome. But she fought anyway. The average life span
for someone with ALS (the form of MND she had) is 2 to 5 years. She
made it to the high end of that range with a lot of effort on her
So to kind of end on a positive note… A few years back there was
the ALS ice bucket challenge. I suspect by now that funding for
MND/ALS has dropped back down. So now would be a good time to throw
them a bit of cash if you have some. A lot of the research in terms
of a cure goes into researching our genes and how they work. Therefore
the research can actually have wider benefits, but just curing ALS
is a worthy goal.