Sharing ‘Me’ – The Fine Line

(Inspired by a FaceBook post written by Kathleen Kiddo on November 25, 2018)

 

It’s something I face every day, living out my life, to the best of my ability, partnered with a progressively degenerative brain disease – Parkinson’s  (PD).

I often wonder if I’ve said too much, shared too much, shown too much, expected too much: of myself, of my life, of my limitations, of my potential, broadcast in too much detail, my struggles, my victories, and my milestones… then again, why wonder?

Cuz sure enough there’s going to be a day when I wish I’d said or did something, versus holding back.

Yes, I’m living with PD however, I’m still me, in fact there are times when I see a better me, a more understanding me, a more aware me and most definitely, a more expressive me, stimulated by all that my senses can absorb.

Yet, there’s a fine line between the ‘me’ you see and the ‘me’ that’s behind the scenes – in a constant mental state of negotiation and compromise in order to remain in tune and confident that I’m on track to achieve my intended daily goals, some of which are the simplest of everyday tasks.

When I’m out in public, away from the isolation of my lair and the restrictive means of my PD symptoms, I’m usually sporting my ‘A Game’ persona.. all cylinders are firing in perfect timing and the engine of this vehicle is ready to rumble…. in reality, all my tools for coping with my PD are walking in step, accompanying an alert and confident me…eating well, sleeping well, meds on schedule, staying active and remaining social… it’s difficult to achieve, yet personally rewarding when all the ’checks’ are in the yes column.

Now that’s not good ‘press’ for my PD, in fact, I’d probably not be a good PR person if required to promote an awareness of the relentless progression of Parkinson’s Disease. You see, as mentioned in the previous paragraph, when out in public, I’m usually sporting my ‘A Game’. “I’m on” !… and that’s the person that most of my daily contacts will ever see.

When I’m ‘out there’, I have a greater sense of control of my body, my movement, my speech, my thoughts, my ability to act responsibly … not your stereotypical person with Parkinson’s.

These times, when I’m ‘out there’ in the public eye, trying to fundraise.. or volunteering or presenting a topic for discussion….or just running errands like anyone else, are not really presenting a convincing specimen in my attempt to gain understanding and empathy for my ‘cause’.

 Yet, that’s when I’m able, to walk, talk, drive, and not lose my feeling of independence or require any support. Now there’s nothing wrong with that, I’m not embarrassed or ashamed in any way of the advancement that my PD has taken.  It’s just how I’ve chosen to use my ‘on’ time…when all is in sync. 

I’m more concerned that when I’m away from my ‘environment’, that a symptom may progress to a stage requiring more attention or a new symptom may surface.

I’ve noticed recently, that I’m experiencing very noticeable gaps between my ‘on and off times’.. reminding me of my body’s dependence on my ‘routine’.

I’m very fortunate that my adherence to my routine has allowed me to live well with my Parkinson’s.

When I say, ‘live well’, I mean that I make the best of my ‘on’ time (when my meds are working to suppress my symptoms ) and maximize the efficient use of my available time.

So, I make the best of my ‘on’ time, like I am right now. 45 minutes ago, my meds had not kicked in and a couple of my symptoms, rigidity and slowness of movement (bradykinesia) had taken control of my left hand, arm, and leg. I only needed the effective use of my left-hand typing, however, that wasn’t going to happen cuz my left hand was in a clenched fist /claw formation and about 2 keystrokes behind the pace of my right hand, so all of my paragraphs consisted of oodles of typing errors…so I waited and did other things around the house.

I’m learning to compromise and implement task workarounds. 

When I post something that I’m experiencing in my life, it’s after I’ve written, rewritten it, checked each word for the correct spelling and ensured no letters are missing or no spaces are between letters – all due to the fact that my 2 hands are not in sync… the finished product looks ‘normal’… thank you, edit function.

The same goes for the music I’m composing … my ideas are circling in my head, waiting to be released ..spontaneous compositions are rare for me though, cuz my left hand is a couple notes or strums behind my right hand… so, if after numerous ‘takes’, I’m unable to produce what my mind has created, I will resort to a workaround and use my right hand to play all the tracks I want, raising or dropping an octave.  

This is best done while I’m ‘on’… thankfully my brain is on board for my workarounds and doesn’t rebel or shut down in some kind of a neurological ‘work to rule’.

The same goes for my physical activity…when I’m ‘on’ I’m frickin’ ON baby!!  …however, as of late, the ‘on’ time has a shorter duration and on occasion, is less frequent… a concern for me…wondering what’s next.

I’m also noticing a significant difference in my physical capability between when I’m ‘on’ and when I’m ‘off’.  There will be times when I can have the energy and capability to cut my lawn and my mother in laws lawn in one afternoon and yet the next day have little energy, drive or capability to focus on raking a single bag of leaves….

What I shared above are just a few examples of what it’s like to live in a constant negotiation and compromise mode. This is the constant effort that many people face, living with Parkinson’s.

When People with Parkinson’s (PwP) share a moment of their day in a ‘this is what I did’, versus ‘this is why I was unable to do it’ post or memory, we are sharing a personal good news story or as Kathleen Kiddo phrased it, a small miracle. For we’ve achieved a personal accomplishment that may have been a previous challenge. At times, our ‘will’ and determination has aided us through improvisation and found an alternative solution to achieve our goal, while our PD would prefer that we give up. 

So, if you don’t know PwP or are unaware of what effort it takes for them to be present and in the moment, and only judge on what you see, you’d be gravely mistaken.

  For the record, as you read what I’ve written, let me be clear, I don’t want to give you the wrong impression. I’m not living under the rainbow of happiness as I look at my future. I’ve got Parkinson’s, it’s progressing and it sucks…ok, sneak a peek at my hands and look for a tremor if you need a second opinion – sorry unless I’m stressed my hands are pretty steady…I won’t let PD define me… 

So if we ‘look good’ in an activity, or broadcast an accomplishment or even share the completion of an everyday task, it’s probably because it was just what I referred to earlier, at a personal level, a small miracle. 

Living with Parkinson’s isn’t so much what you see as it is what you may never see….