Forgive Me For I Have Sinned... But Damn, I Look Good!

“Forgive me Dane for I have sinned" I muttered to myself as tugged on the door to Starbucks. While she had no training relating to the confessional, I have always thought that Dane could've made the transition with ease. That is, as long as the Yanks hadn’t drafted her for Guantánamo duties first. Her ability to read me like a cheap Conrad Black prison buy n’ sell, was alarming. Her powers of interrogation were such that on departure I typically checked my pockets to see if at least she had left my wallet intact.

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.

 "How are you Blair?"

 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."

"Amen!"

Confessional complete, I reached for my back pocket. Wallet - check...



[Comments? Like this post? Think I need another long break? Want to nominate me for an award? You can reach me personally at: blair.rasmussen@gmail.com

MIA Update

Reports of my demise of been greatly… Apologies for the long absence. I am back in the saddle. and hope to have something to you shortly. (No plans to define "shortly", as I have made that mistake too many times :-) (I can say we are talking days…) See you soon, Blair Apologies for the absence. Recovering from back surgery. I hope to be able to cobble together a blog entry for you in about a weeks time... Blair

Ain't No Cure For The Summertime Blogger Blues..

Indeed, with the weather so spectacular these days it is been exceedingly tough to bring myself to sit down in front of the keyboard.                  

Working on a piece that should be out shortly.   Sadly, the topic will touch on the recent passing of Robin Williams - and of course the revelations of his recent  Parkinson's diagnosis.

Look for something about the end of the weekend. before weekend! (Fri Aug 29th)

Blair

Hope and The Hapless Wordsmith

The
Hopeless Optimist
Hopeful Agnostic
Optimistic PessimistHapless Wordsmith

“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you're going, but you know that so long as you spread your wings, the winds will carry you.”

― C. JoyBell C.

I have been sitting on my latest blog entry for so long that I'm afraid to look at the calendar to find out exactly how long it has been.  More worrisome is that I seem more preoccupied with understanding why this has taken so long than getting the thing done and uploaded. Doubting that I can back up my claim that I don't  believe in hope?  Worried that people will think I'm some sad, depressive fellow worthy of their pity? Concerned that some readers will be turned off by my statement?.  A confessional yes to all!

I also realized that I needed to cleanse my blogging palate, as I was a tired blogger who seemed more intent on swiftly justifying my current position than discovering if there was an alternative truth to my seeming condemnation of hope (and there’s no tougher pill to swallow than the realization that there might be an alternative truth). I had been gnawing on the same empty bones for weeks.

I clearly needed to refresh. Luckily I have been a long-suffering Windows user for many years  and knew exactly what my options were:

1.  Refresh Blair without it affecting his blogging work to date.  You can refresh without losing your jokes, cartoons, and any other filler that you get from Wikipedia. Get out of the house, get physical, reconnect with a friend,

 2. Delete everything and reinstall Blair.  Choose this option if not even your mother will read your blog anymore. Shut down system completely.  Load your bikes on the car and go and enjoy the unbeatable therapeutic triple crown of mountains, cycling, and espresso. If you want to start your current blog piece afresh,  this will restore yourself  to factory settings. Why keep anything? It was a piece of rubbish.

So seriously, you don't "believe" in hope? No, in all honesty I cannot make that claim. I made the mistake of blogging about a very sensitive topic in an extremely hyperbolic state late one night. This often happens in the wee hours of the  morning when the veracity plummets and the drivel seems to run like the readership of a seriously misunderstood blogger.

With Parkinson’s, hope is at best, a dim bulb, a flickering 5 watts of low probability construct.  Like a night light, it functions as an emergency beacon; its primary  purpose is to prevent you from walking into walls at night and becoming the butt of office water cooler jokes. It is best not relied on as your primary source of illumination or inspiration.

I do believe in hope. I simply remain unconvinced that there is much utility in it for me - at least for now. I mean, I keep some in my toolbox, but I've yet to find a job where I needed to pull it out. It's like those “hex” bits (six headed screwdriver bits). When you do finally find a job that you can use it on, you realize that you can actually make do with other bits (an appropriately sized Robertson, or a slot screwdriver) just as well. What kind of self-respecting Macguyver would rely on such a “uni-purpose tool?”

I know, I know, I hear what you're saying, “He's fine now, but wait until he has a bit less to cheer about, then he'll be singin’ hope’s tune. He sure sounds like one of those Republicans, trashing Obamacare - until their Reaganesque luck runs out and they catch a neurodegenerative disease. See them sprint to hop on the bandwagon.

Honestly, I love the idea of hope - I can snuggle up to the warm and fuzzy image projected as well as anyone else. It’s just the practice of it that doesn’t appeal.  So where does that leave us, to live for today and screw tomorrow? Overindulging in hope risks not respecting Parkinson's and its proven track record of neurodegeneration. Could German philosopher Nietzsche’s remark that, “There is no greater misery than to remember happier times” be reconfigured to: “There is no greater misery than to pre-live unhappy times expected in your future". I don’t think there’s anything wrong with focusing on today because you don’t like the prospect of the tomorrow that Parkinson's is likely to present you.

The Road West Beckons...

Hope doesn’t get me out of bed in the morning. The prospect of sitting down with a quad espresso and a blank page does. The chance of enjoying the open road on two wheels with Judy, is what gets me out on the bike and keeps me active. A chance to sit on my front porch with my 4 ½-year-old buddy and chat about, well, anything  -  “Blair, you still have the zoo in your attic?”  “Absolutely  -  two of each.“  “Monkeys?”  “Hundreds - They are so noisy!” (For now, my biggest task is finding a way to explain to my neurologist that my insomnia is  unrelated to Parkinson’s - more to a troop of Capuchins :-)

Gotta run, sun is rising and the road west to the Foothills beckons. Time for another dose of CycloTherapy. Have no idea where we will end up, but that’s ok...

Long time No Post...

The dog days of summer have arrived.  My apologies for the long delay since the last posting - especially given that the topic raised in my last entry was hope.

Hope seems to be a very powerful force for some, a lesser, or even a non-factor for others. It is a complicated subject, not one that can be distilled into small soundbites.  My views are a little more complicated than "I don't believe in hope", making a thoughtful reply a bigger task than I assumed.  I hope to get a reply for this weekend. 

Cheers,
Blair

Looking For Vinny - Parkinson's For Life Without Parole Pt 2

The Phantastic Neural-Penal Translator

While I suspect that many readers might have assumed that the whole shtick with contrasting Parkinson’s and a life sentence in the Big House was just that, a shtick, it wasn’t, (at least by the end of the investigation). I was really counting on this piece to stand on its own as a hard-hitting number - like something that the CBC’s Fifth Estate would punch out. At this point, it was about as hard-hitting as a body shot from one of my elderly brothers.

Struggling, I revisited some of my earlier sources to see if there were any updates I could tap into. I checked my forum account at meetAnInmate.com. My posting: "former beauty queen seeks platonic information gathering sessions on prison life" had gotten so many replies that I cancelled the posting. I have found out that the visitors center was an open set up and not behind glass. I doubted  I would survive the pummelling for my postings stretching of the truth.

I had reviewed an excellent article: “50 Slang Words To Make You Seem Like a Tough Guy in Prison” and immediately recognized half of them from my youth. I called up a few of my siblings and tried some of the remaining words. It seemed to work effectively - they still kept their distance.

I had even listened to Johnny Cash’s Folsom Prison Blues. A few movie marathons later, including  Escape from Alcatraz, Cool Hand Luke, the Longest Yard, etc. and I had my thesis: that Prison Guards and Neurologists were in cahoots.  While my resources didn't allow an in-depth investigation, what we uncovered was certainly enough to call in the good people a The CBC's Fifth Estate.

I'll assume you're familiar with the standard (studio mandated)  opening scene where the new inmate (with the Houdini-like abilities to escape) is read the riot act by the Warden. It struck me how much the Warden/Prisoner intake dialogue resembled the Neurologist/Patient intake dialogue. So much so, that I began to think like a conspiracy theorist. And that's just, well, dangerous :-) I didn't have any particular conspiracy in mind. And that's just, well, worse.

Neural - Penal Translater

Watch as the following Warden statements are run through the Neuro - Penal Translator producing the correct  Neurologese translation to the right. And yes, I will confirm rumours that  as a result of the tremendous success this new product, we're looking at the possibility of using this technology in other applications such as a new Marital Translator, Parent - Surly Teenager Translator, Grumpy Guy With Parkinson/s - Partner Translator etc.

I see you have a history of escapes, assaults, and  you are a real shit disturber - Care to comment?	I understand you ask a lot of questions
From now on you’ll breathe when I say to breathe, you'll eat when I say to eat,  and you'll crap when I say to crap. Got it?	This is Sinemet. From now on you will take it at 5am, 9am, 1pm, 5pm, and 9 pm
No one has ever escaped from this prison	There is no cure for Parkinson's
Here at Alcatraz, I deal with prisoners cannot be reformed	Here at the Clinic  we work with neurodegenerative diseases that will not get better, they will worsen over time
Your ass is mine from now until, oh yeah… LIFE!	I will see you after six months from now till neurodegeneternity!

Yes, I'm not the only one taken aback by  the brazen statement of facts and the unapologetic presentation of an unpleasant reality.  I don't think it's a stretch to wonder whether the two of  them went to the same school - but seriously, you want me to suggest that their programs were barely differentiated? That’s pretty bold stuff. I’ll go with it.

Signs your neurologist may be moonlighting at the local penitentiary:

• They suggest “corporal punishment” as a new experimental treatment for Parkinson’s
• They begin to accessorize with Kevlar. 
• They threaten that if they get one more call from the pharmacy to refill your prescription you’ll be going to the “hole” for six weeks
• When questioning you about your exercise levels, they asked how much time you’ve been getting in the “yard” lately.
• They never turn their back on you anymore

Note: no doubt you have noticed the photo to the right. Yes, that is YOUR Neurologist Dr Degenerate! One of our alert readers sent this in to me.  I struggled briefly with my journalistic responsibilities. Extremely briefly, as if I had any, I was unaware of what they were anyways.  Do note, your neurologist has not broken any laws (at least in the photo). I do share your concern over his ability to function at a professional level at your appointments the next morning. I for one, would not feel good entrusting the counting of my toe taps to someone who has been fawning over Vinny "SmartyPants" Malone.

Vinny, aka "SmartyPants"

So you’ve met the Warden. Now it’s time to take a stroll down to cell block B where you will meet he guy who can really get things done. Let’s introduce you to Vinny in B-6. Vinny is the guy who can get you absolutely anything. Need a nail file for your (ahem…) . nails? Vinny can get one for you. Need to get a valentines card to the Warden’s wife? He can take care of that as well. Need to get a set of floor plans for the prison? Done!

Vinny’s smart, real smart. There should be no mystery why they call him “SmartyPants”. Vinny knows his game well. He knows the posted rules, and he knows the real rules. He knows his needs, his suppliers, and his market, all, very, very, well. Vinny is a master of his limited domain. In the big house, he knows what is beyond his control, what he can control, and when he can attempt to influence. You and I can learn a whole lot from Vinny.

If I was half as sharp as Vinny, I would sit down and sketch out all of the things  I can either control, or influence. Vinny, being the sharp, resourceful fellow he is, would then look for gaps and inefficiencies and would seek out the best people he can find for his team. They may have a rap sheet a mile-long, but they would be the best he could find. Are you bold enough to ask for the best?


So now you've learned a bit about prison life, you've met the Warden, Vinny, and maybe gained a little insight into why your Neurologist is incessantly yawning. Our final instalment looks at the concept of hope, why I don't believe in it - and what strategies and secret weapons I possess to help me through to the finish line.

Next: Final Instalment - The Hopeless Optimist

Looking for Vinny - Parkinson's For Life Without Parole

Usted no me Dijo el Tío es Una Leyenda Del Café?

“Quad Espresso!" the Barrista shouted, giving me a short reprieve from the interrogation I was about to undergo by Shemp, an ex-con. I leapt up, enjoying the notoriety (imagined or not) that ordering such a hi-octane drink would bring. I made eye contact with a few of the regulars, accepting their likely feigned admiration. I raised the necter to my lips, glanced off into the distance, and in my best Juan Valdez accent offered, "nuez, adecegrita, yaque domina la crema" (nutty, suitably bold as it dominates the cream) My disciples nodded in agreement, as the Barrista rolled  his eyes. Good god, They still think I'm Columbian ;)

Shemp and I had crossed paths about 12 minutes earlier outside the coffee shop. He had been panhandling, I, doing a blog entry that contrasted living with Parkinson's to a life sentence of incarceration, was looking for someone with real life correctional experience. Shemp was my man. A free lunch in return for one hour of "Life In the Big House For Dummies."

I wracked my brain for any personal anecdote that might convince him that I was just a little bit less like Howdy Doody and a shade more like Clint Eastwood. Someone once told me that everyone should have at least a minor skirmish with the law. I think the thought was that if you were just one more stupid comment away from charges, it was some indication that you were at least willing to stand up or yourself. I would suggest that the addition of the adjective "stupid"
was maybe a sign that this was a bit less about logic and more about a boiled down explanation of how we actually fill our remaining rooms in incarceration.

I thought I would test him with this one. After a few minutes of conversation, I would wait until the first pregnant pause, look at him with an expression appropriate for a "we got business to do" situation... (of course, I would first need to locate that look in my repertoire), then I would ask him "can you be trusted?" At that point, I'm guessing that he would either strangle me with his bare hands, or he would be ready to do business. I would look at him, pause, and whisper "last week, Monday - I killed a man, with kindness. At that point, depending on his reaction and demeanour, I would either bolt for the door, or really bolt for the door…

I was striding back to the table when I realized that you can take the con out of Millhaven Pen but you can't take…. The grub had arrived, and Shemp's latent penal instincts had kicked into high gear. He had assumed the Emily Post approved correctional dining position - crowding the  plate, arms protecting either flank, shanked left and right with the business end up. That’s right, Shemp ate his meal with two knives. Frankly, it scared the shit out of me just to sit at the same table as a double-shanked Shemp...

I let out a next to silent groan. I managed to coerce one of the few remaining loyal cells in my substantia nigra to help out with some movement, cracking open an eyelid. Ahh - Starbucks, fantabulous. I slowly raised my head off the table, self checking whether I had violated any coffee culture norms. Ok there. A swizzle stick - stuck to my cheek, fell to the table. Shemp,  I muttered…?

 No sign of Shemp. I checked my Starbucks receipt to see if there had been any charges on it - other than my regular quad. None. Was Shemp one big apparition? Quite possibly. I had been warned about "extremely vivid" dreams as a side effect of one of my medications. I got up to go and splash some water on my face when I noticed a napkin on the other side of the table wadded up into the tightest ball you could imagine. On the back of the napkin, was written my working title for the blog entry but not in my writing:

"Once you accept that you are not in control,

you are in control...

Family feud, Unjustly Detained, The Lost years...

Occasionally I will chat with someone contrasting life with Parkinson’s with incarceration, particularly with the concept of a life sentence without parole. Most are uncomfortable laughing at Parkinson’s to begin with, even if I take the lead - c’mon, it’s safe, follow me …. (the ice is thick enough!). I appreciate the thoughtfulness involved, but do wish I could have more belly laughs with others about it. Some disagree with the characterization of Parkinson’s as a life sentence, while others question my knowledge or first-hand experience with the penal system to make a valid case.

For your information, I am eminently qualified to make this comparison. I have watched every epis0de of Prison Break (80),  I survived as a sibling detainee in my youth,   I have toured Alcatraz, and most importantly, I, myself, have done time in the Big House.

Hell hath no fury like a sibling who will one day write a blog

Sadly, the photo to the right can be reduced to yet another tale of brotherly love gone sour, one more example of misuse of RCMP resources by one of its members, (a Sargeant no less), and ultimately, an oh-so- desperate attempt by a brother to knock me down off my favorite son pedestal. (it’s a wonder I can write with such clarity in this thin air).

Cycling through Kimberly, B.C., I was hauled off on an obscure public (in)decency law Kimberly Code 2.6.4  Subsection: Public Indecency and Spandex Cycling that read: “if over 40 years of age, thou shalt not be seen on a bicycle in spandex, unless deemed to be “somewhat hot for their age.”  I took the expedient route and plead guilty. I mean, its not like the sentence was remotely Mandellian in length. (I was out in 20 min.) It’s just that I reject any form of "Hotness profiling".  I know, I know, I could have easily fought it !




Next Week: Part Two starting with The Phantastic Neural-Penal Translator