Tag Archives: experience

The Meticulous Choreography of Improvisation

13 Jul

I found this on thautcast.com: “What I Can Do Is Pretend To Be You”. It’s an Aspergian’s reflections on a life focused on passing, focused on perfecting “the character” others want us to portray. My first three-plus decades felt like this. I remember having to do an improv scene in the mandatory high school theater class and I just couldn’t grasp how to make improv work. Now I know that nearly every moment of my life was strictly scripted, with rationed moments of improvisation to perpetuate the illusion of flexibility and the words and looks that suggested that I was just a freak and not fitting in on purpose, and not possibly because of anything organic, formed in me before words and judgments and comparisons.

I struggled with that for years, as I tend to fixate on the things I can’t do, or can’t do well (training from my youth, when things were forever paraded about with labels regarding shortcomings, comparisons to other people, and my intelligence).

I fixate, I hyper focus, for the sake of pursuing mastery and approval.

I should say, I fixated. I hyper focused.

I’m so much happier now, being myself.

The approval I seek is my own, and I’ve learned to be flexible in my criteria and the word and concept of perfection aren’t in my vocabulary except as a scar that serves as a reminder to buckle up or watch where you are going as next time a scar might not even have the opportunity to form over the wound.

I wish I had this piece, from Larkin Taylor-Parker, on a sandwich board to wear around people who refused to look at me and instead focused on what they felt I wasn’t willing to be, for those who saw just the failure and the gaffes and not the effort and considerable choreography applied to each moment, to pass even just a little…

Click the link to hop on over to thautcast. I’d like to hear your thoughts on this piece and the concept of “passing”.

On Autistic Passing: “What I Can Do Is Pretend to Be You” | thAutcast.com.

Happy Friday,

B

The Sun Will Come Out Tomorrow.

9 Aug

Hello!

Here I am!  No really, I’m here!  Stop rubbing your eyes. This is not a mirage. I am actually updating my blog with a brand spankin’ new entry.

So, how has everyone been?

We are coming up on the end of the summer, or at least the end of summer vacation for those of us with kids.  In our little nook of Florida, school actually started today for some counties, and starts for ours next Monday.

My last blog entry involved trying to raise funds to send Alex to a special Aspie camp in Ohio.  An extra huge Thank You to those generous folks who contributed!   Unfortunately, we had made plans based on my first few weeks of methotrexate therapy, when I was feeling alive and awake for the first time in years.  I swear, I though the one or two days of fatigue would be manageable.

But things changed as we upped my dosage.

And the fatigue started to spread as some of the joint pain started to dissipate.

And it spread over me like molasses, gripping my feet then slowly weighing the rest of me down.

I started to imagine the methotrexate pills as Liliputian military lashing Gulliver to the ground.

And at first the ties on my body and brain would loosen after a few days.  I’d have 2 days of exhaustion, sleeping around the clock.  I have not slept so deep since before I carried Alex in my belly, and certainly not in the 7 years since. I am his guardian, his advocate.  I am hypersensitive to sound and smell.  I am always alert, just in case. Because I know it would take nothing short of a car alarm blaring an inch from our bed to wake the baldman up.  So I am in bed, muscles tense, dreams shut out, senses alert.

But methotrexate sinks me into this strange isolation tank as I start to nod off and for two out of seven days the world carries on as I dream vividly, and soak my clothes and the bed sheets with pouring sweat, and wake only in the evening, to recharge with pedialyte and whatever I think I may be able to keep down before resuming this odd sleep, and the handful of medications that keep me alive.

Then I was having a couple of days of fatigue, but not sleep-coma fatigue- more like sleeping away the morning, waking up around noon, and then actually functioning for a couple of hours.

Then we upped the dosage, twice, and each additional little pill sucked more life from me, even though the labs showed that it was also cooling the inflammation in my body and my markers dropped to within normal ranges.  I have a good doctor though, who sees his patients fully, and his thought was that as I wasn’t feeling better then we must continue looking for answers and testing treatments, as numbers mean nothing when you feel like crap.

I slept 3 days of every 7, then 3.5 of every 7, until finally, today, I realized that I had slept 5 out of seven days, and felt like I could sleep the next 24-48 and still be exhausted.  My body started hurting from lack of use instead of swollen and misshapen joints.   My muscles hurt as though I was running a marathon everyday, as my meds made me contract every one and hold the tension, even while sleeping.  Everything felt so pulled that just taking a single step, or sitting up at the edge of the bed, threatened to break me.

I weighed the pros, and the cons, and realized that I had traded an existence that had been modified to fit around the pain and fatigue of rheumatoid arthritis for one that was built around the pain and fatigue of the treatments for rheumatoid arthritis.

I had panic rising up in my chest last night, that I don’t want it anymore.  The idea of Thursday coming up fast and the idea of taking those pills again filled me with dread, I am feeling so cornered, so trapped.

So I called the doctor.

And I am stopping methotrexate now. I will not take my dose this week for the first time since the beginning of May.  I will continue to take the Plaquenil and the tiny doses of Prednisone.  In the beginning of September I will have my next labs and appointment with my Rheumatologist and we will work from there.

For me, this treatment was worse than the pain and stiffness, and the fevers inched higher on the meds than they did off of them.  It didn’t matter anymore that my joints felt better than back in May, because I can’t use them if I am sleeping this much…  This experience for me has been like getting the flu every week- I’m either coming down with it, in the thick of it, or getting over it.  The getting over it and coming down with it parts keep getting smaller, so that I feel like I have a five minute stopover and my next flight is from another concourse.  And Alex needs me.  And not just during those little glimpses of OK.

So I am done.  Another medication that I had a crap reaction to.   I’m allergic to most of the meds they use to treat inflammation, at least the ones with a mellow side effect profile. I’m giving my body one week to sleep the rest of the toxic soup away and then I’m going to do some hard planning. Time for balance.

Oh broken body, please accept something without protest.

But it can’t do that, as what kind of battle strategy would that be.  Auto-immune disease is a bitch.  It feels strange accepting and caring for a busted up body that keeps trying to derail all progress.

I must be stealthy and ninja like. I must be ruthless, ferocious.

Game on, body. GAME ON.

Xo

Bek

Expectations

23 Feb

Wink wink nudge

Originally uploaded by CleverIndie

The more I read on various message boards about customer service – from both sides of the transaction- the more I realize that the primary role of customer service is not actually the service role, but a very different one that begins the moment the customer walks through the door (brick and mortar or virtual).

Customer satisfaction and good customer service are usually a direct result of setting customer expectations and then meeting those expectations.

In my old career of providing customer service for large corporations, I discovered that the dissatisfied customers were the ones who had unreasonable expectations that could not be met or those who had reasonable expectations that had not been met. From first contact to last, all interactions with the customer are building expectation.

Companies begin building expectation by choosing a specific location for their storefront. The build expectation through their logo design, their reception area, even the ease of navigating their phone system when you call to ask a question- before the customer and company ever exchange paper, the expectations are being set.

Some expectations are assumed, they are ingrained in our culture- whether that culture is our specific location in the world, our language, or the type of business we engage in. But beyond the cultural expectations, everything else should be set by the company, and expressed effectively.

When this doesn’t happen, people get mad. People share their anger with their friends, neighbors, co-workers, and with the blooming of the internet and it’s blogs and message boards, masses of strangers and near-strangers. The sharing of information has made company reputation somewhat precarious. There is the old scenario of someone having a bad meal at a restaurant and telling a friend, who then tells a friend, who tells a friend… Today that one person may mention the terrible meal on their blog, and instantly that information is open to everyone- that one person they told, could be 30 people in that first day – who tell 30 more people…Or it could be tens of thousands of people, who remember the negative review while making small talk with tens of thousands of their friends. Bad news is viral.
There is the argument that any publicity is good publicity, but still bad news is viral.

You want people to take the chance with your company, with your product, with you, as a small business you may be less likely to afford to lose potential customers based on one person’s negative experience.

What uses more energy? Putting out fires or preventing them?

Preventing the fires (from negative customer experience to bad press) is difficult, it’s a multifaceted, never-ending process, but once the process of identifying, setting, and meeting expectations is put into place, the results can be quite spectacular.

My first suggestion is to start a small notebook to brainstorm.

Be mindful of your start to finish experience when engaging as a customer with similar businesses. In my case, I took note of my experiences with companies such as Amazon.com and my experiences purchasing goods from sellers on ebay and on Etsy…it doesn’t have to be the same type of goods…Actually, I find that an assortment of experiences work best- a broader range of expectations and goods, and in these difficult financial times, it’s something you can study without breaking the bank, while purchasing necessities for your family and business.

If you take an experience from start (realizing you need to buy a specific widget to having the widget in your hands) to finish and really dissect the experience- from why you chose to buy the widget from that particular place to what you expected from the experience before it even began, and how any expectations changed and why during the experience, and how your expectations were met and not met and how things could have been done differently to have met all of your expectations.

Many people consider customer service to be an entity, something that comes into play only after a negative product or service experience. The more time I spend on both sides of all transactions, I realize that the most important responsibility of customer service runs throughout the customer experience. In a time of job cuts, and corporate customer service having a negative association (people almost expect bad customer service from most companies these days, regardless of their actual experience with the specific company), we really do need to examine why customer service has earned this association, and ultimately I keep coming back to the concept of expectations.

The best way to understand the areas you need to address, as far as setting, expressing, and meeting them in your own business, is to take a very close, and very focused look at your experiences as a consumer, and as a provider of goods and/or services in regards to expectations throughout the customer experience.

In the coming weeks I will be taking a closer look at my experiences with expectations, I would love to hear some of yours as well…

Best wishes!
Bek

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