Like a handful of others, Dane is an "unofficial" support staff member of my "Parkinsons Wake" Dream Team. This crack collection of individuals - all the cream of the crop of their respective disciplines (Neurologists, Baristas, Spiritual Vacuum Guides, Forensic Humour Detection Specialists, etc. are entrusted with the responsibility of ensuring that I continue to meet (or beat) all neurodegenerative markers set, that my decline remains in line with my d.o.b. AutoDeGenERATOR - a 1961 Dodge Dart (Slant Six) scale, and that ultimately, they leave no stone unturned so that day in/day out, I can be the best little degenerator that I can possibly be.
Unbeknownst to Dane, she has filled multiple roles on the team over the years. Unbeknownst? Yes, my support team functions entirely in a permanent state of unbeknownst. Really. None of my professionals know the others exist. The benefits are huge. It minimizes competition, which keeps payroll down, keeping me under the salary cap. There is no in-fighting (no one knows who to fight with). On top of all this, I have no stinkin’ Christmas staff party to foot the bill for.
Dane’s delivery, and its timing, had satisfied at least two requirements for an earnest answer. She had either verbally italicized the word "You" or had maintained eye contact without the "deer in the headlights" look of someone who had a distaste for private truths (and feared one was coming straight down the pipe). This was someone, who, like most, preferred the Vicks, but Dane could also handle the Buckley's if prescribed.
“Good Enough" I replied.
"That's a new one?"
"Well, only so many ways to answer that question - and frankly, I'm running out of new ones. That brings us to today's phrase. Have you heard of the ‘you look so good!’ disconnect?”
“I have a hunch, but go-ahead.”
“In a nutshell, it refers to the often significant gap between friend’s and family’s perception of your level of disability, and reality. I think this is most commonly seen in the middle years of the disease, where your condition can vacillate between normal or near normal levels of ability, to utter… Everyone is affected somewhat differently -- poor mobility is my main impairment. At those off-times, if you lined me up with evolution on the left and global warming on the right, I would be safe money for the bronze. Compounding the misperception is the fact that most of us will tend to venture out during the "safe" periods where we are unlikely to experience failure.”
“I know exactly what you’re saying. I'm guessing that meetings like this would be appealing. A set start time and a predictable finish would give you a great opportunity to nail the meds, right?”
“Right, short surgical strikes are always fun :-) There are two disconnects on the go here - yours, and mine. Yours being that when you see me skip into Starbucks, you may easily assume that that is the norm - with no ability to fathom the utterly massive gap between my best and my worst. My disconnect? The fact that I get the warm fuzzies when you remark that I look so good - but I also experience a feeling in the pit of my stomach that I'm being deceitful in some way if I don't follow up their glowing assessment of me with at least some self deprecating comment indicating that not everything is peachy in Tinseltown. This may take the form of the humorous quip, ‘You look great!’ ‘Sure I do, but just wait five minutes’ :-)"
“You know what people will say, Blair - people think you look good, and you're complaining? Just enjoy it - run with it!”
“What's the problem you say? Well, none, if you're the kind of person who wants no one to worry about you, shares little, and is fine with that scenario. Fine, if you don't mind your physiotherapist thinking you are unreliable because you missed the last two appointments, when it is really due to a medication not kicking in and you are too proud to admit the truth. And, no problem if you don’t mind friends thinking that it sounds like they are booking an appointment when they want to drop by ‘sometime in the morning’.
Without dialogue and understanding of where you are in your battle, you are leaving interpretation of situations, decisions etc. to chance. If the people around you do not understand your Parkinson's, they will not really understand you. No, your Parkinson's does not define you, but it will ascribe meaning to a lot of your decisions and behaviours.”
“Blair, your blog certainly goes a long way towards opening people up - but most people will still need a door left open if they are to join the conversation with you comfortably in person. Don't forget Parkinson's is usually not associated with laughter or jokes as you make it out to be. With most people but your closest friends, you will need to give permission to them to laugh with you or ask you. I think you'd be surprised. You and your friends are not as far apart as you think. Don't you see that you're playing the same chess game? They are likely waiting for some sort of permission from you to broach the topic - while you are waiting for some sort of signal that they are the kind of person that can handle the Buckley's. Don't forget, some may never want to touch this topic with a 10 foot pole.”
"In the end, I suppose that yes, it is myself ultimately who is the gatekeeper. Disseminator of silliness, misinformation, and humour - and maybe I don't mind people thinking that I look really good, I just need to remind them that I do, and often have to, "cleanup really really well":-)
“So what is your conclusion in the blog entry going to be?”
"What blog entry?”
“Don't test me Blair - Remember, you're the one who sinned and you haven't told me how yet”.
"Damn, you've got good ears :-) “Dane, when we meet up for our interro-- um, I mean, um, interesting chats, I don’t feel any sympathy for my condition. We talk in practical, matter-of-fact terms, We have a dialogue going.Those kinds of conversations have a lot of value for me - as I think they would for anyone. Establishing or maintaining at least a minimal dialogue with someone who has Parkinson's is very useful indeed. Too often "talking and sharing" about a topic such as Parkinson's is encouraged as a way to unload, to vent, or to simply feel better without any other purpose. Though there's nothing wrong with a good vent, I see dialogue in this situation as a means to exchange the motivations and reasons behind actions and behaviour that may be otherwise misunderstood."
Confessional complete, I reached for my back pocket. Wallet - check...
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