Wednesday, June 30, 2010

Read the Fine Print

With my nose completely shut due to allergies, out of desperation the other day I took an OTC antihistamine. It was Italian day at lunch and I had grown weary of not tasting any of my food, so ignoring the instruction panel I ripped open the package where the headline read "Daytime Safe Formula" and took the tiny white tablet without even a glance at the label. Big mistake.

Exactly twenty minutes later, with my eyelids heavier than concrete and ravioli dripping from my chin,  I lifted my weary, sleepy head out of my plate, and with all the effort I could muster, focused a magnifying glass on the small print on the side of the box and read to my dismay: "Warning: May cause drowsiness.

"Whaaat?" I said to myself, "this is supposed to be 'Daytime Safe'!  Safe for what - outpatient surgery? I felt like I had been shot with an elephant dart full of thorazine, and in tiny 4-point helvetica type they whisper "may cause drowsiness?"  Whatever that stuff was, in my view it would have been much more honest to reverse the whole thing, and label it a "Guaranteed to Put You To Sleep Medicine" with a smaller mention of "May also help control your allergies."  

Regardless of the intent, the combination of the misleading package headline and the small print on the instructions ended up costing me a half day of cogent thinking, as I sleep-walked through the remainder of the day. 

It could have been worse. Some of the newer drugs advertised on television really scare me. Have you seen any of these commercials? Thanks to recent regulations,  when a drug manufacturer advertises on TV they can't hide the fine print like they do on packaging, because the FDA makes them actually say all the ugly stuff on TV.

For example, there's a new weight-loss drug by Glaxo Smith Kline promoted on TV  called "Alli." On the shelf in the drug store, you might be drawn to it. The box is cute, with rainbow colored lettering, all very easy to read and "safe-looking." The TV commercial has skinny people frolicking in a field, wearing all white.

But on TV, they are mandated to say all the fine print that you wouldn't normally read, and it's pretty hilarious, if not frightening. 

"Side effects to Alli include gas with oily spotting, loose stools, more frequent stools, and stools that are hard to control." 

I don't know about you, but no matter how much weight I lose, I've always found it difficult to look svelte when the gas I pass leaves an oily spot.  And I'm thinking the last thing I'm wearing when I take Alli is white pants.

I'm serious. This is not hyperbole. Here are a couple more:

Requip - a dopamine drug to counteract tremors: "side effects include an unusual urge to gamble and increased sexual urges and behaviours." 

So it's either the shakes, or I turn into Hunter S. Thompson? That doesn't sound like a good deal to me.

Accutane - an acne medication: "side effects include crying spells, rectal bleeding, and bone fractures." 

Now I may not remember all the details of my adolescence, but I'm pretty sure at age 14 that I probably would have learned to live with that pimple on my nose, if it meant walking my clean, acne-free face around high school with a broken leg in a cast.  And yes, I admit it,  macho-boy not withstanding, I would definitely be in tears, crying my eyes out,  if I put the cream on my face and my butt started bleeding!  Who wouldn't at age 14?

Reading the fine print is even more important for us fighting this disease, because research has shown that with our immune systems in overdrive, or out of whack, our bodies often react quicker, or more strongly, to published doses.

We also sometimes react to other people, or other circumstances, differently, or more strongly as well. That's because our Central Nervous System is under attack, and our "senses" are often attenuated.

Yesterday a woman at the gym had her personal aerobics CD blaring from her iPod, not using her ear buds as is the policy, so I was forced to listen to what for me was like nails on a chalkboard. It wasn't the oldies music so much that I minded, but the invasion into my brain of the super-animated Richard Simmon's voice, urging me to "Come on!" a dozen times per minute. 

When I asked her to use her earphones "please!" she surprised me by saying "there's just two of us here, it's not that loud." 

I couldn't believe it. My ears were ringing, and she thinks it's "not that loud?" Right then my wife arrived and I thought I'd get reinforcements. As she got on the treadmill I asked her if the noise bothered her, and to my surprise and dismay she said, "no, not really. It's not that loud."

Not that loud? To me it felt like Richard Simmons himself had taken up residency in my gym shorts, and had placed a megaphone an inch from my face screaming.  At that moment I saw myself in the wall to wall mirror, with my eyes dilating, my brow furrowing, and the anger starting to rise.

These were the "side effects" of the disease I battle, the "fine print" about my health that most people didn't see or discover until something like the Richard Simmons episode ignited them, or revealed them. 

Sometimes I can feel my heartbeat increase, and blood pressure rise.  Other times I can feel the weight of a dark cloud. If I'm fortunate enough to be near a mirror, one sign that many of my doctors have confirmed is pupil dilation.

My wife has gotten used to these "side effects" and often snaps me out of them with focused little comments like "your eyes are dilating again" or "you look like every orifice in your body is about ready to burst." 

That last one usually does the trick, because I can actually picture the scene. It always starts with me frolicking in a field, wearing all white.

Saturday, June 12, 2010

How Not to Become Invisible

It was worse than just being ignored. 
The problem was this arrogant nurse was trying to make me feel invisible - As if I didn't exist - And that I just couldn't permit. 

It happened at the clinic. This nurse was a freelance RN hired exclusively by another patient to do her infusions at my Doctor's office, and from day one this RN made it clear that she was above the rest of the staff and patients, using silence as the weapon of choice. Regardless of whether my greeting to her was "Good morning!" or a simple "How are you, today?", for four full weeks she did not respond or say a word, until yesterday. That's when she got my dander up. 

As I was seated in the infusion recliner, right at the critical point when my Nurse Gwen was trying to enter my vein for infusion, the RN decided to stand next to me as if I wasn't even there, and speak over my head to Gwen with a negative comment. 

"Took me four sticks the other day," she said, disparagingly; which is just about the last thing you want to hear when there is a needle poised over your hand. Of course, it both shocked and distracted Gwen, so as she paused, I decided to fill the space with my voice. My intention was to both rebuke the RN's rude behaviour, as well as illustrate the fact of my existence in the room to her. It was as if I was repeating Oliver North's lawyer, Brendan Sullivan's famous line, "Hey, what am I, a potted plant?"

Shocked and corrected, for the first time in a month she actually looked at me, saw the dilation of my retinas, mumbled an apology, and shrunk back to her corner saying something about her understanding my point.

For those of us who have physical challenges and sometimes obvious disabilities, it's easy for some people to devalue us...
  • to misinterpret our lack of stamina as a lack of stature; 
  • to view our weakness in posture as a weakness in character; 
  • or to actually take it as far as this RN, and instead of looking at us, or engaging with us, to look past us, over us, or even through us, as if we didn't even exist.

In the original "Invisible Man" series of films produced in the 1930's, the character played by Claude Rains visibly disappears after drinking some concoction, which at first seems advantageous, but over time proves problematic. After enjoying a few fleeting benefits of invisibility, most of the film is about Rains' struggles to be noticed and taken seriously,  through his actions, deeds. or when a voice comes out of "nowhere." 

Have you encountered people in your circle who patronize you? I call that an attempt to make me invisible, and whether it comes in the form of denial by loved ones, or just plain arrogant behaviour by people in public, I've learned that the only way to counteract invisibility in their minds is with strong actions that make me clearly visible to them - sometimes even including a very loud "voice out of nowhere." 

Let me list a few of the ways I change things up from day to day, to make sure that despite my challenges and disabilities,  I'm not invisible to those around me: 

I Change the Tone and Timber of My Voice - Whenever I feel people aren't listening to me, I'll lower my voice to a whisper, or raise it above neutral. The former requires people to shut up and lean into me to hear, the latter snaps them out of their stupor. The main thing is, I speak at a volume differently than normal.   Because I've lived all over the world, I'll also occasionally change my accent. I can speak Southern Californian English as well as the Queen's English, but often if I add my Spanish accent it gets the person's full attention. 

I Change the Style and Substance of My Clothes. The fact that my body feels like a dirty washrag doesn't mean I have to dress like one. I've found that the more I dress "up," the less people look "down" at me. A TV producer once told me that the goal of every one of her celebrity clients was to "fill the room" when they entered it, and I've adopted that axiom. So even when going casual, I'll usually pick an embroidered, "True Religion" shirt like "Dog the Bounty Hunter" wears, rather than just a plain white one. It's hard to be invisible when you look like a walking billboard.

I Change Mode and Method of My Communications. If some people usually get emails from me, I'll change it up and call them by phone. If others only receive written letters from me, I'll send them an instant message. In public places with bored workers like Bank Tellers or Fast Food Servers, I'll place my order in a rhyme or a song, just to snap them out of it. By changing the wrapping of my words, I get better reception for my words.

I Change the Scent and Strength of My Cologne. This is right out of Schindler's List, and it is a really simple rule - if they can smell you, they won't forget you, and you are not invisible. I make sure I buy the highest strength cologne, usually brands from France or Germany, or the Bond line from London, which have more scented oil so that my fragrance lingers in the room after I leave.

I Change the Substance and Source of My Credentials.  Because I have had over 20 jobs in my life, in a variety of industries, I can "be" a lot of different people depending on the need of the moment. I've shared earlier how on airline flights I sometimes mention that I am a pilot. Sometimes when I can't get service out of certain government functionaries I show them my press pass, because to this day I still am a reporter. One of the best credentials I use when I don't get good service is to mention that I am simply "a regular customer" who will be writing a letter to the President of the organization about my experience with you - and how this story is told "depends upon you, right now. So, let's start with the spelling of your last name." Even if they still treat me with contempt, I guarantee you I am no longer invisible to them. Ever again.

After my infusion that day, long after the rude RN and her only patient left the clinic, Gwen and I were the only two remaining, so I said to her, "Hope I didn't cause you any stress with my comments earlier." 

Gwen replied, "After 4 weeks of not talking, I was in complete agreement with you. I was glad you said what you did." 

"Yeah," I said, heading to the exit and elevator, "sometimes you just need to speak up, even if it is a "voice out of nowhere." 

Gwen gave me one of her super-warm smiles, and I left the office happy. 

As the elevator door opened, with my head down, I almost ran into a woman exiting, who I had seen in that building a few times before, but I didn't know her name. I was just about to say "Oh, excuse me," when she exclaimed, "Wow, nice shirt!" 

"Thanks," I replied, "Nice of you to notice." 

"Hard not to!" she said, sincerely, with a smile.

"Mission accomplished" I said to myself, and Claude Rains, if he was listening.