PLEASE Don’t DIS My ABILITIES

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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.”

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With the guidance and power of the Holy Spirit, some people I have known for a long time, and others I had not ever heard of before, have connected with me because of this exposure and we have been enabled to make some soft sweet music together.  I am so blessed to have a tiny part in proclaiming God's wondrous love and care for people in whatever life situations surround them right now.  I challenge all of you readers to ask God for someone to join with you today in showing His love, whether it be in a quiet soft way or in a jubilant lively way!  You might be surprised by His choice for your connection.today.

Sincerely,

Patricia Ann Siebersma Haveman

[email protected]

Guide

Patricia, thanks so much for sharing this part of your story!