I was not born disabled, nor have I been disfigured in any way.
But the insidious invasion of my Parkinson’s Disease
continues to dismantle one aspect or another
of my otherwise ordinary daily life.
Permanently placed on my kitchen wall are these words,
written as a reminder to myself and to those present:
“When I can . . . I need to.
When I’m unsure . . . I want to try.
When I can’t . . . I’ll rely on you.”
written to remind me that I can’t expect you to know
which of those three is true at the given moment,
unless I tell you.
The disorganized manner in which PD displays itself
with different symptoms in each individual victim
leads to confusion and questioning:
“Why doesn’t she have a tremor or shake?”
“He doesn’t shuffle the way my grandpa did
but uses a cane he doesn’t seem to need.”
The disorganized manner in which PD displays its symptoms
with differing degrees of severity each hour of each day
also leads to confusion and questioning:
“He was walking just fine this morning.”
“Earlier she couldn’t come to Bible study
but now she can be at the game.”
The disorganized manner in which PD displays its depleted dopamine levels
in a wide variety of outward and obvious movement disorders,
or in the vastly assorted inward and hidden disconnections
of organs and systems and bodily functions,
leads to further confusion and questioning:
“I thought PD was a disease of the muscles
and makes you stiff and slow and unstable.”
“You mean it affects your digestive system
and your skin and your swallowing and your sleep?”
“Does PD make your face look grumpy sometimes
even when you insist that you’re not?”
In sharp, stark, contrast to all that ongoing, unsettling, disorganization
comes the demanding, unrelentingly rigid scheduling
of medication intake enough times per day
for the diseased brain to replace as much dopamine
as possible to function as normally as possible,
timed as separately as possible from food intake
for the maximum available benefits of both.
The daily periods of feeling unwell while waiting for pills to kick in,
and the times of disruptive disfunction as the pills wear off,
can be lessened dramatically, or even avoided,
by strict coordination with the timing of meals,
but, you may have to eat at odd times
or take pills in the middle of church.
On top of all these disjointed aspects of the brain disorder known as
Parkinson’s Disease, lies the smothering blanket of fatigue,
fatigue that is not relieved by replenishing the supply
of dopamine to a brain that no longer makes it;
fatigue that is inevitable and does not discern duty or desire
no matter how essential or important the occasion;
fatigue that disrespects the very heart and soul of its victim
and disconnects that person from society.
But inside these ever-disassembling visible and invisible components
that become the manifestations of my chronic disease,
yes, inside, despite all the days and months and years of changes,
inside this deteriorating body, resides my same original self:
the me who could multi-task sun-up to sun-down,
the me with children to raise and trucks to dispatch,
the me with committees to chair and sports to support,
the me with a husband sharing in it all.
Maybe you knew the me I once was
or maybe you know only the me I am now,
and maybe you know others with diseases like mine
that present challenges to the people around them.
My family and close friends continue to kindly adapt to the variable me.
My fifty-five-year faithful spouse, five years dating, fifty married,
has become my precious, conscientious care-giver.
I once was a drummer in the band, setting the pace.
Now I’m sometimes sent to the sidelines
because that seems easiest.
But I’d like to speak up on behalf of those others
whose gifts and talents can and should be shared,
once their limitations are understood and accepted,
so, I’m making make this request to anyone who reads or hears it:
that if sometime we’re put together in whatever small way,
“Please don’t DIS my ABILITIES.”
“Maybe together we can DIScover
a way to honor and glorify our mighty Savior
who created our bodies in his own image
and who sacrificed himself for us even before our time,
so that TODAY, we, as we are NOW,
with the help of his Spirit in each of us,
may show the world the love that we share
by making some soft sweet music together.”