It is the Guilt That Will Kill You....

Feb. 25, 2014





        

This sign/poster speaks the truth.  Anyone who loves a Parkie, knows it takes more than a village, it takes the whole tribe.  But, that is where a Parkie becomes riddled with guilt. I am only in stage II and am 49 yrs old, so I can really only speak for Young Onset Parkies when I say....it is the guilt that could kill you.

Before my formal diagnosis, I went through a traumatic divorce which plagued me with guilt as a mother.  Every day, every difficulty my children had, every time they even faltered, the pangs of guilt stabbed my heart like a knife.  At times, I felt it unbearable.  It is only recently that I was able to shed this weight, as I saw my two sons as successful, happy young adults, with so much drive and determination.......what was there to feel guilty about?  It obviously did not hinder them as growing into successful adults.  So, bam!, guilt gone.  Well, only partially.

Parkinson's progresses at different rates, per individual.  You will find that by the time you are successfully diagnosed, your world has already changed....you have already had to depend on someone.  For me, the fatigue was the worst, and most prominent symptom.  I had suffered through unusual fatigue several years prior to my tremor.  And it is usually not until a tremor is present, and sends out red flags, that a diagnosis of Parkinson's is even pondered. And yet, I suffered, and I don't use that term loosely, from daily chronic fatigue.  It became so prevalent an aspect of my life, that my grown children still recollect funny things they did or "got into", when Mom was asleep.

From the moment I woke up, in those early years, the fatigue was all consuming of my day.  I would have great difficulty waking up, and upon doing so, would be overwhelmed by the daily routine of life.  Getting ready, getting the kids up and on to their bus, followed by a 30 minute drive to work.  It was not at all unusual to find myself actually nodding off on that drive.  I would open the windows wide, crank up the radio....anything to help me stay awake until I was out from behind the wheel.  By 2:00 in the afternoon, I would feel like a zombie, going through the motions at work.  After work, I had to face that drive again...windows wide open and radio cranked.  I would walk into the house, greet my sons, and lay down for a 2 hour nap.  Awaken to make dinner, followed by another nap, and then once everyone was in bed, I would finally crash for at least 7 hours, until the whole schedule repeated itself the following day.  That was the first time, as I look back, that I took on the guilt factor.

By the time I was diagnosed four years later, the guilt was just embedded in my being.  I don't know if that was due to my Catholic upbringing, or my history of health issues.  But Parkinson's made me feel guilty, just by admitting I had it.  You see, even I know what is ahead for me.  Progressive, not curable.  I will likely end up in a wheel chair, incontinent, drooling, and difficulty communicating.  I will be totally dependent on, most likely, a nurse.  But realistically, I am looking at that hopefully in 20-30 years.  But, this could be the fate of any of us right?  But for a Parkie, it is not a chance, it is a definitive future.  So, I feel guilty about my circumstance, daily.  How long before I become a burden?  

Above all, I feel most guilty about the things my wonderful caregiver is already having to give up.  My daily schedule includes nothing between 7am-12:00 noon.  It becomes very difficult to plan anything.  Most of my outings wear me down after about 2 hours.  Will he tire of this reality?            ."pang"...guilt.

Funny, it is currently March 4th.  I began this blog post on Feb. 25th.  Ugh!!!  "pang!"....guilt.  I have struggled with this particular post.  It is the first one that I did not complete in one initial sitting.  And the more focus I put on the topic, guilt, the more things are jumbled in my brain...mix together...all the things I feel guilty about...all the things I can't do....all the things I won't be able to do....it is all tossing around in my mind, making this a particularly difficult post to write.

But..then again...it is the guilt of leaving a post on my blog, incomplete, that has made me finally sit down, and complete it.  Perhaps the guilt is there for a purpose.  The guilt keeps me going.  The guilt keeps the narcissistic me, at bay.  Wow....an awe moment!  What started out to be such a negative thing in my life, feelings of guilt, is what may in fact, be the single trait that keeps me focused on possibility, not finality.