Control

In the early 1990’s, I worked for a man who had a degenerative neuro-muscular disease. The disease eventually progressed to the point that at the time I met him, ( I think he was in his late 50’s?) he was using a manual wheelchair with a large “breathing machine” attached to it, because not only did most of his large muscles fail to work, but even the muscles that help the diaphragm pull air in and push air out of the lungs were barely there. The machine did this for him… pushing air into his lungs because he couldn’t take a breath on his own.

I became one of many personal-care attendants who helped him with every single aspect of daily living. We also were expected to follow house rules and *try* not to tread on the daily lives of other family members who were living there. Imagine having a loved one who requires nearly constant care, essentially having 2-3 strangers in and out of your home all day, every day.

This man and I became great friends. I would suspect that everyone who worked for him would echo this sentiment. He had a wicked sense of humor, an amazing intellect, and an ability to laugh at himself when it became obvious he was taking himself to seriously. He had a “New England” manner of speaking and a dry, dry sense of humor… often difficult to grasp because he had this big, distracting contraption coming out of his nose and over his head helping him to breathe in between his comments.

I worked for him for about 2 years, and toward the end of this stint he and a former worker concocted some whacked-out idea that we should just load up him, his equipment, and a couple more workers, and take off on a 10-day road trip to Yellowstone National Park. I was invited to be one of the attendants on this trip, and reluctantly accepted.

Have you ever noticed that when you feel that certain aspects of your life are out of your control, it becomes of the utmost importance to CONTROL WHAT YOU CAN? We used to poke fun at our friend for the manner in which he insisted that we use *this* coffeemug rather that *that*. Routine tasks had to be completed within a very specific timeline, there were lots and lots of rules.

When we packed for this Yellowstone trip, we were commanded to pack *TWO* of
every single piece of equipment that he required. Okay, we understood the need to an extent, but let me tell you that every item that went into the van, every checkup that went on under the van’s hood, and every detail; lodging, mileage, gas consumption, sightseeing stops, meal-times, etc. were overseen with utmost precision by our friend.

Hell, if you couldn’t even decide when to take a breath, wouldn’t you try to control everything else that you could? Anyway, the trip was a blast. We had an unbelievably good time, despite the fact that we were all crazy enough to load up a man who was essentially on life support into an old Econoline Ford Van and set off on a trip that would send us all through the National Forest, staying at different motels the whole way.

Accessibility and comfort varied greatly at these places, despite the careful checking that our friend had put into all of it, but we managed to work our way around just about every conceivable pitfall, including excessive snoring (wasn’t me) a very strange and vocal dream…(might have been me) an unexpected eruption at Old Faithful geyser, a van break-down in Montana, some bears, a pissed-off biker who didn’t understand why “we” moved his Harley out of the way of the van lift that he had thoughtlessly parked under, making it impossible for us or our friend to leave the scenic overlook we were visiting and yes, of course, the inevitable equipment malfunction of the breathing machine.

My memory of this is very clear in some ways, and cloudy in others, but as I recall we had just had some sort of mountainous adventure that entailed our friend, his wheelchair, breathing machine and backup battery to ride willy-nilly in the back of a pickup truck with the strongest (and certainly the most enthusiastic) of us three attendants. It was a successful maneuver, an excellent adventure, and afterward we had returned to the van and were headed down to some lodge for hot chocolate.

Suddenly something snapped on the tubing of the breathing machine, rendering it ineffective. Attendant #1 pulled the van over to the side of the road and began applying deep pressure to our friend's diaphragm to maintain some airflow. I and the other attendant proceeded to rip apart every bit of equipment in the back of the van to find the replacement hose or valve or whatever it was that had malfunctioned, and to replace it. This entire scene took maybe 30-45 seconds, but was scary as hell… you bet we were SOOO glad to have had the right equipment with us, because there was no way we’d have made it anywhere where appropriate help would have been available. Even an ambulance would not have been equipped, as a regular oxygen mask doesn’t have the force necessary to force air into lungs that are clamped down under such a weakened diaphragm.

The rest of the trip was eventful, but uneventful, thank goodness. What an experience. I moved on to another job and stopped working for this friend in the fall of that year. I often saw him around town and said hello, but I knew that ultimately I was replaced by new people who had so much to do with helping him to function and enjoy his life.

He died a couple of years later. Appropriately, it was another attendant who called me to tell me, and subsequently I called several former attendants myself to pass along the news. Many of us gathered and reflected on the life of our friend and what a strange and rewarding experience it had been to work for him and to be part of his and his families’ lives for whatever length of time each of us had.

Speculation on his “cause of death” abounded during this time and for a long time after. Of course his disease was the cause of his death. But there were questions as to whether or not he chose when to exit. My friend and I, (and many of the other attendants, I assume) had our share of deep and philosophical conversations while assisting him with washing his face or exercising his limbs before bed, or helping him dress in the morning. I recall talks about disability issues, about terminal illness, about end-of-life decisions.
And about death.

I am glad not to know how it all fell into place at the end. I am glad I wasn’t working for him on a day-to-day basis when it did happen. Despite of and because of the trials of his particular long-term illness and subsequent disability, he had lasting impact on many, many people. I told him once that if he had not gotten this illness and needed the extent of care that he did, that I would never have gotten to spend some great times with him, and I really would have missed out. What an odd thing to be grateful for, and he grinned when I told him that.

He probably said something sarcastic after that. He was an activist and advocate for people with disabilities, although it certainly wasn’t his first choice as a career… but circumstances sort of mitigated it. He liked to tell the old joke that some people believe that people who use wheelchairs want the whole damn world to be flat. He said that actually it would be nicer if everything was slightly downhill.

I hope that when his life did end that it was peaceful.
And I hope that he had as much control of it as he wanted.



Kansas Health Ethics Advance Directive Forms:
http://www.kansashealthethics.org/index.php?topic=advdirect

Tour of Duty

I forgot to mention that I outlined my re-negotiation plan to Fester in the form of a letter, with bullet points and everything. I was very enthusiastic about my plan, feeling that I had accurately identified all of the potential arguments and had effectively addressed them. I think I even clapped my hands after I handed the letter to him.

He read the letter, grinned, and said yes, sounds good… but he also added that he felt like my enthusiasm made me seem like an Army recruiter, ready to sign him up for another tour of duty.

I replied that indeed, I was, but would not send him to the front lines this time, that he’d be like a senator’s son, with a cush office job.

Fluffy Rain

I am so good at denial. I practice and practice and I am truly an expert. Yesterday there was some strange white stuff floating down from the sky. It was wet and cold. I decided it was fluffy rain.
This is not right, we just had the equinox, for heaven’s sake.
Day of balance and all that good stuff.

The Vernal Equinox
As the newly reborn sun races across the sky, the days become longer, the air warmer and, once again, life begins to return to the land. Twice a year, day and night become equal in length.To the elders of the Olde Way, these times, equinoxes, were markers in which seeds would be planted and then harvested. The first of these, the Spring or Vernal Equinox occurs on or about March 21st.The ancient goddess, Eostre, a Saxon deity who marked not only the passage of time but also symbolized new life and fertility.

The only new life and fertility happening in my world right now is within the science experiment I like to call my “refrigerator”.

Best excuse ever not to participate in a booty call:

“I can’t, I’m still too attached to you.” (from Fester on St. Patrick’s day after I propositioned him in his car. Hey, I was a bit tipsy, I admit it...and when you're wearing a tiara, you tend to just ask for what you want.)

Other excuses noted by friends:

“I know you enough to know that I can be honest with you and that you’re cool enough to understand that I’m itchy.” (hmmm. She said he had poison ivy or something.)

One friend sent me all of the following…
My apartment is a mess
I have to work in the morning
I'm on my period
I am hung up on my ex
My apartment is a mess
I have to work in the morning
I'm too drunk to drive over there

She’s good, hmmm???

And another friend states:
“There IS no good excuse for turning down a booty call.
Right on, sista.

Welcome to the O.C., bitch...

It's been a lovely 3 day interlude of snot, snoring, sleeping, snuggling (with the beagle, of course... who else?) and watching 27 mindless hours of The O.C. on DVD.

Yes, my life is a bundle of fun. St. Patrick's day was a blur of sparkly greenness... it was a blast to hang out with the chicks and smile and dance our way down Mass. St. It did kinda suck being the fat queen, but hey... The whole get-up was so ridiculous that my smashing figure just enhanced it, I am sure. I'll be posting a pic on the refrigerator, just to ensure those winter/non-smoking pounds will continue to drop off. (I've actually begun the downward trudge on the scale, thank GOD.) It's amazing how a certain weight can sound so terrible on the way up, and be so welcomed on the way down!!

I got a snootful of pollen or something on St. Pat's Day which triggered a horrific head and chest cold, which made for the exciting weekend in bed with Seth, Ryan, Marissa, and Summer. Those crazy kids.

I've had some great conversations with my friend who is in KC doing the rehabby thing... she's doing great... her attitude is right on, and I hope for great things to come. In the meanwhile, I've received confirmation from several sources that I made the right decision in cutting loose the other friend. Things were being said that were even more negative than what I was hearing personally. But isn't that the way it always is. Sometimes unhappy people just suck in way too much energy, without giving any back.

I've thought a lot about the exchange of energy between people recently. I feel like I have gathered so much positive energy from friends old and new over the past few months of trauma. In doing so, I hoped that I'd have it in me to give energy, also. I don't want to be someone who takes it all in and doesn't give back. And oh my, have I struggled. It was really hard to find any reserve to deal with my best friend, and frankly just didn't have any left for the not so great friend. I think that Lulu http://www.runlulurun.blogspot.com/ is right, though... the answers are within us, if we just listen to our instincts... and I knew instinctively where my tiny bit of energy was best spent.

On to the week ahead... (I think I need a GODDESS recharge!!!)

Letting go and hanging on

Some friends are worth letting go of. I have this one “friend” who I've known for years... He's been here and there and everywhere. He's always about himself, and rarely about anyone else. He's living mentally in some glam rock world of 1983 involving cast and crew who leave me bewildered and confused, as I was never there. Austin, Ecstasy, 1982? Or whatever? Umm. Ok. Wasn't there, didn't do that. Not to mention the fact that he’s endlessly critical in the stupidest ways… Vagina Monologues, other friends, and any other venue that he’s not part of. So I’ve decided that any “friend” who leaves me feeling worse about myself instead of better, I’m cutting loose.

Some friends are worth hanging on to no matter what. I almost lost one last week, and thankfully thought better of it and decided to ride out her crisis with her. She’s now in REHAB, and I am so damn proud of her and happy for her. I know we all have our little demons, but recently her demons were havin’ a little party that I knew I had to keep my demons away from, lest they suddenly decide to jump in, too.

And some friends make you wanna put on a sparkly green dress, a tiara, and get jiggy with it in the St. Patrick’s Day Parade. I think I’ll stick with those friends for now.

On Pain, Pads, and Pickles

Lately I've been a much nicer person at work. This does not, however, change the fact that I turned in several different client's paperwork to the county funding agency with the EXACT SAME birthdate on each of them. It reminds me of the little poem...

There was a little girl
Who had a little curl
Right in the middle of her forehead.
And when she was good
She was very good.
And when she was bad,
She was horrid.

I seem to be swingin' both ways between good and horrid most of the time. Hopefully the crimson tide will come swishing along soon and smooth things out. Yesterday I read a craft article in BUST magazine www.bust.com that featured an embroidered tampon holder with "BLOODY HELL" stitched on. Love that.

And in regard to that lovely time of the month that each woman lives through for 20 or 30 years. During the Vagina Monologues, there was a lot of talk about how we wanted to get our periods as young girls... couldn't wait!! As I recall, it was disturbing to know other girls who got it first, and who developed earlier, etc. I was very happy to be "normal" and to get that little gift. The excitement of THAT wore off quick, and then it became an excellent excuse for not doing things.... especially with male teachers. The word "period" went a long way with them in making them a bit pale and agreeable to whatever "break" I was suggesting for myself. (Although not nearly as pale as Mr. Schwartz in 5th grade when I asked him what a "hard-on" was. That was fun.)

A friend of mine has a 13 year old who "started" this fall. That Monday she announced at school that she would, unfortunately, be unable to complete her math assignment because she was having her period. Shit, I wish I had thought of THAT when I was young.

So the point of all of this is that I guess maybe it's a big deal to be DONE with it, too. I was sitting in my book club the other evening, and we were discussing a nice southern novel dealing with integration and racism. For some reason, one of my comments inspired one of my fellow book-club attendees to ask my age. Like a deer in the headlights, I thought: "Oh, I am the youngest woman here." Well, at 35, that's soon to be more of a rarity... better dig it while I can. I don't know many of the women at this book club well, as we meet monthly and often I skip it, and I was invited to join by my boss, and she knows them better than I do. One woman who attends regularly is always so sweet in the meetings. She is sometimes shocked and dismayed by events in the books. She seems so... wholesome. Anyway, in the middle of this discussion about racism, she whipped out from under her chair a big bag of Super Kotex and Super Tampax. And announced proudly and gleefully that I could now have them, as she did not need them any longer. Super!

(Who knew that you could download your very own Kotex Fits. Period. Advertisement for your desktop!! Neato. http://www.kotex.com/na/funspot/downloads )

And speaking of my boss... My sloppy paperwork of late has caught up with me and she proposed a paperwork initiative today in our staff meeting. She was very very serious about it. She reviewed it thoroughly... it had some long title, but the upshot (that one's for you, Beth.) was that we need to turn things in on time, and she probably needs to look over what we turn in to attempt to minimize stupid mistakes like handing in forms with the same birth date over and over again on them. Okly dokly. She sent us each an electronic copy of the dates to remember and the protocol. With this title:
Barb's Improvised Goal Promoting Accuracy in Notation, Improving Needed Timeliness, Honing Excellence and Securing Success.

Not everyone in my office "got it".

BIGPAININTHEASS.

You gotta love having a boss who works to support you in doing a better job, is available if needed, and if all else fails, will just poke fun of the situation. She has a rather twisted sense of humor, and the rest of her immediate family either reflects it or has caused it, I'm not sure which.

Today I sat at my desk having PMS, eating Girl Scout Damn Cookies and drinking pickle juice. Who wants chocolate and salt?? I do!
My poor, poor co-worker Beth is still kvetching because I might have possibly used her scissors to dig the last Vlasic Zesty Dill out of the jar earlier today. She made me wash the scissors, with soap, and she claims they still smell like pickles. Wait 'til she smells her scissors on Monday.