The Chaos of Youth

I spent the holidays with a wonderful assortment of my real family members. By “real” I certainly don’t mean blood kin. Having been adopted at two months of age, I’ve only ever had one blood line: my amazing daughter and her five utterly outstanding children. They couldn’t be here for Christmas, but two of my daughter’s cousins (on her mother’s side) brought their spouses and children, so the house was filled with the spirit of the holidays and the chaos of youth. A wise friend once told me that “family is where you find it.”

Now my niece and nephew are very special to me. They always have been. When my late, ex-wife and I divorced (amicably) many years ago, both her family and the church my family had belonged to for four generations turned my daughter and I out like suspected terrorists. I exited as graciously as I could, chalked it up to my failure to measure up, and noted all the relieved faces of my “brothers and sisters in Christ” as I backed away. My daughter simply refused to let them off that easily, and relentlessly holds up a mirror to their “family values.” She left that denomination, but not their lives. Her cousins were far too important to walk away from, so she just didn’t.

As it turns out, the two oldest cousins apparently tossed the memo about me being off the Christmas card list, because they never let me go. I was kept in the loop about moves, jobs, marriages, etc., I got frequent phone calls through the years, and they visited me (with or without my daughter) whenever they could. You’d be hard pressed to find two more beautiful hearts. Sadly, their parents, grandparents, and church disapproved of their various life choices, so they were shown the door too. They left, and got on with their lives. Their life choices became part of my real family, and I sometimes feel twinges of guilt for the sheer joy they all bring to me . . . joy that they would undoubtedly share with their blood kin if they weren’t being judged and shunned in the name of God.

The “Cousins’ Dinners” my daughter started many years ago have been an amazing thing to watch. When the two next-oldest kids became mobile, their first flight of freedom wasn’t to the mall or the video arcade. They joined the cousins’ dinner club. They were toddlers when I left town, but one of their first solo cross country trips was to my house in Florida. I was stunned when I heard that they wanted to come, and overjoyed when their parents let them. It was my daughter’s doing of course, and her insidious weapon is a simple one: unconditional love.

There’s one last cousin in that family, and I’ve enjoyed watching him bloom on Facebook. Perhaps he’ll join the revolution too, and hopefully when he leaves home, he too will leave bigotry behind and grow into an adult unafraid to love and be loved. Regardless, there will be a small and relentless group of rebels who will never shun him nor let him fade away.

The older I get, the more chaotic Life, the Universe and Everything seems to me. I find that I must slow down and focus on one thing at a time, always leaving time for a siesta. But my young family strides through the chaos with great vigor, infecting everyone they meet with the hope that humanity can learn and grow, that we can discover the best within ourselves and within others. I don’t know about the rest of you, but that’s what my Christmas was about this year. Am I a lucky old bastard, or what?

First Contact

I was getting some onboard inservice last Thursday up in Stuart, FL. My new Hake Seaward 26RK sailboat "splashed" this week, and as soon as the last few bugs get ironed out, delivery will be scheduled. We would have taken it out, but the 25 knot breezes suggested that perhaps my first time should be delayed a bit!

While we were tied up, the wind and swell increased, and a Coast Guard Zodiak pulled up to our dock. They had been called when a 20+' fishing boat broke loose in the harbor. With nearly a dozen hands on deck, they arrived in plenty of time to watch it drift by, dragging its anchor/mooring bouy, and then smash into several docks and pilings as it went by, missing my boat and several others by inches. I think they thought it amusing as the 70+-year-old owner struggled to get to it by oared rubber dingy while they stood watching.

It was my first experience with the CG, and I was ashamed for every one of my tax dollars those particular young men represented. The need wasn't high profile and/or media/video worthy enough, I guess; rather it simply called for a little human decency, and there was none of that on deck. I hope I don't ever have to depend on that crew if I'm ever in a jam, but another Florida boater suggested that if I was in trouble, it might be better to call in saying I had drugs on board, or that I thought I might be a terrorist. Let's hope it never comes to that!

NO REST

My cousin’s name is Lazarus
We shared the family tomb
I guess he must have passed away
‘Cause I woke to find him in my room

I heard the voice that called him out
The Master he adored
And though I too awakened
The summons left me there and floored

My life was cold and loveless
And it killed me years ago
So I was not surprised to find
That Laz was raised, and I, well, no

I drifted back to endless rest
In a place that brooked no pain
Until, again, a voice broke through
And this time, lo, it called my name

But the voice was not the Master’s
Who had beckoned Laz come out
The tone and timber weren’t the same
And my sense of horror left no doubt

The voice I heard was female
And its softness made me quake
I think I soiled my grave clothes
When it firmly beckoned me awake

Of all the earthly terrors
That might call me from my sleep
This siren’s song unnerved me most
As it urged me leave my cold dark keep

I’m cowering in the corner now
Knee deep in dust and bone
And praying that the huntress there
Has not the strength to roll the stone

For if the light should enter
And if I saw her face
I fear that I, like cousin Laz
Would rise and lumber from this place

They say Hell hath no fury
Like a woman once denied
But when she calls you from the grave
There’s simply no place left to hide

So eat, drink, and be merry
For tomorrow you may die
But may the Lord have mercy
Should a woman cast her searching eye

For there is no rest in this life
And the Jordan’s deep and wide
So until the lady lets you go
I guess your visa’s been denied

QUEING UP

I went to the market the other day. It’s got a great reputation for fresh fish, meat, and produce. I wanted fish. But this blog’s not about fish. I selected Red Snapper, asked the tall guy with the sharp knife to fillet it for me, and headed for the check out register. Since the fish was my only purchase, I rolled my wheelchair into the “10 Items or Less” express lane...right behind a woman who was buying lots of groceries. She had so many items, the obviously intimidated checker was hard pressed to fit all the bags into one shopping cart. But this blog isn’t about obnoxious people who bully their way into the express lane at the grocery store.

I paid for my fillets, rolled out of the market, and discovered that the obnoxious woman was parked in one of only four handicapped spaces, loading her “10 items or less” into a minivan. She had no discernible limp, gave no evidence of using a prosthesis, and did not appear to be the least bit winded. But this blog isn’t about lazy and obnoxious people who use handicap parking when they don’t need it.

I recently received two e-mail letters about handicap accessible public bathroom facilities. Both letters were primarily concerned with having to wait on line, and one was rather adamant about not wanting non-disabled persons to use the wide public toilet units which have been modified under ADA guidelines for easier use by disabled Americans. This is American culture at its worst, part of our obsession with being first. We want what we want...and we want it now. If we have to cut someone else off or bend the rules to get it now, so be it.

I find this mentality particularly unbecoming in the disabled community where equal rights sometimes get confused with a misguided sense of entitlement. Unlike the parking spaces outside, it’s not illegal for non-disabled folk to park in the wide bathroom stalls. Nor should it be. And being disabled doesn’t entitle one to go to the front of every line...whether it’s the line to use the restroom or the line at the grocery store. We want “equal access,” the right to come and go where everyone else comes and goes; fine, but what makes us think that not having to wait in line is somehow part and parcel of that “equality?” That’s what this blog is about.

My grandfather used to say: “The world doesn’t owe you a living.” What is it that gets into our heads when we start to think that we are owed, that we are entitled to this or that because, well, just because? Why did that woman at the market think that it was OK to park in a handicapped space and march into the express checkout lane as if she owned it? I don’t know. But I suspect it has a lot to do with laziness and impatience. We have become a lazy, impatient society, and even a cursory glance around the globe reveals that (1) we don't make much anymore, and (2) it costs far more to produce much less that breaks down far more often in America. (My TV repair guy recently confided to me that one electronics company has scaled it’s “planned obsolescence” down from an expected 7-year product life to one of only a 2-years.)

And if the average American is getting better at convincing him/herself that he/she need not be bothered following the steps from A to Z, then pity the poor cripples. Our lives are so hard, we seem to have twice as many steps to accomplish before we can ever reach Z. If we don’t deserve to cut in line, then who does? Nobody does! Unless there’s medical triage going on, we need to develop some pride and some dignity and some patience. We in America don’t have a clue what lines are all about. Try getting toilet paper in some Eastern European countries.

The funny thing is, lines can delightful. One afternoon, a few years back, I drove into New York City and parked my wheelchair in the ticket line at the Shubert Theatre, hoping to buy two tickets to see Bebe Neuwirth and Marilu Henner in the play Chicago. The sun was shining, the other folks in line were friendly, and the door man told me a great story about President Clinton’s visit to the historic theater. I’m very glad I was able to bide my time with some measure of patience and dignity, as I ended up with a Valentines Day gift of February tickets to a Tony Award winning Broadway show that was sold out well into May. Good luck or karma?

I moved to the Florida Keys to slow down and enjoy my “golden years.“ The older I get, the more my little Irish grandfather’s admonition about not being owed by the world makes sense, but I do spent more time thinking about what we owe one another. (My grandfather also taught me the “golden rule.”)

HOLE TRUTH

Crooked conversation is the art form of our age
And it’s not just politicians anymore
You can’t get an honest answer
And there are no simple facts
And straight forward isn’t either, that’s for sure
You can ask your family doctor
You can call on Madam Rue
You can dial the Psychic Hotline if you choose
You can notify Dear Abbey
You can make the preacher stew
But truth is just a game you’re going to lose

Spin doctored information is the only kind we get
Custom tailored to somebody else’s needs
It’s not the facts that falter
Black and white are still the same
But rumor seldom recognizes deeds
Whatever are we thinking
When we trade the truth for lies?
Was there ever once they really served us well?
We can trace each grand disaster
To the first small damning lie
As we blithely talk our way straight into Hell

ONE LITTLE CHANGE

Like most Americans, it often seems to me as if our government is out of control, not because there’s too much or too little of it, but because the people we elect to represent us lose focus. Some scientists say that the human brain is capable of handling 5 to 7 problems at a time. After that, things begin to fall through the cracks. So it’s little wonder that with all the big things going on, it’s the little things (sometimes easily fixable things) that escape attention. Here’s a perfect example.

There’s a very nice lady in my community named Patty, and if you could look up “salt of the earth ” in the dictionary, you’d likely see her picture. Patty holds down a fulltime job, does volunteer work with the elderly in her community, serves on the local auxiliary color guard, and still finds time to join others at the local VFW post in gathering, packaging, and shipping much needed (and much appreciated) care packages to our troops serving overseas. Once again, it’s the little things that can make a huge difference to our service personnel in the Middle East… like lip balm, just for one example!

It turns out that all over America, good folks like Patty are pitching in, with their time, their talents, their money, and their love, so I assumed that the easiest part of this kind of wonderful grassroots charity would be getting the stuff to our troops. But I was wrong. Patty told me that the last time she and her friends assembled a care package and took it to our local Post Office, the bill came to over $350. Ouch!

I read an article in recent years about how much money the United States Postal Service spends on “advertising.” I don’t recall that number, but I think it’s safe to say that it was staggering. And, at that time at least, a large portion of the advertising budget was spent entertaining large, corporate bulk mail users; you know, the multi-million dollar corporations who get all the tax breaks....and all the big discounts on postage.

I say we take a vote on whether non-profit organizations like the VFW should get FREE shipping when they send care packages to our troops!

To vote NO, do nothing at all.

To vote YES, pass this on to everyone you know. (Who knows? It might lead to one little change!)

WIND and PASSION

Being disabled means learning how to adapt, and for over 30 years, as a C6/C7 quadriplegic, I’ve always managed to find a way to do most of the things I wanted to do. I am 58 years old now, and four years ago I was run down in the street by little elderly woman in her white Toyota Corolla. My titanium wheelchair saved my life, but my pelvis is forever shattered, my balance will never be as good as it once was, and my stamina refuses to fully recover. In short, my ability to adapt isn’t as good as it once was, and my spirit’s been flailing accordingly, so what on earth makes me think that I can go back to my childhood passion: sailing?

When I was about eight years old, my mother’s favorite song was called “Red Sails in The Sunset.” She was so inspired by this song, she told my father that she wanted a sailboat with a red sail. Shortly thereafter, an 8 foot plywood pram appeared alongside our dock, complete with a gaff-rigged red sail. (My mother almost always got what she wanted.) As memory serves, she may have actually sailed it two or three times before the novelty wore off. My interest, however, was just winding up, and I asked my dad if I could learn to sail it. “When you can swim across the lake and back without stopping,” he said without missing a beat, “you can sail her whenever you want.”

“I can do that right now!” I said, trying to sound more confident than I felt. He stepped into the rowboat and said “Okay, let’s go.” It was a half mile to the other side of the lake, and as he rowed and I stroked, he began to enumerate the basic parts of a sailboat, explain what they were for, and instruct me in their proper usage. By the time we reached the far side of the lake I had abandoned the crawl and settled into a more comfortable side stroke. My breathing was heavy, but I was exhilarated because I never swam that far without stopping before, and I knew I could make it back to the dock.

What a far cry from today. I’m up at 5:00 a.m. or so, but by 11:00 a.m. I’m ready for a nap! At 8:30 p.m., I’m so bone weary, I can’t wait to hop out of my wheelchair and stretch out for the night. What makes me think I can sail a boat again? I used to be relentless, filled with passion. My determined spirit repeatedly urged my body on when it had nothing left of its severely limited resources to give. But it gave anyway. In the last four years, however, my passion has been slipping away like helium from an old balloon. Each time I call it up, there is less response. Life, the Universe, and Everything seems far less compelling with each passing day, and when calamities rain down upon my friends and loved ones, it weighs on my soul as never before. There has always been pain in the world, but it never felt so personal nor so heavy before. I guess I just got old and tired.

Every summer that little red catboat was my magic carpet, and if there was even the slightest breeze, I was out exploring every inch of that mountain lake. Sometimes I remembered to take a sandwich, but regardless, I seldom came home before darkness and calm had descended around me. I will never forget the night sounds, punctuated by my dipping paddle, as I ghosted back to our dock. I’ll never forget the way it felt.

Perhaps I’m trying to recapture those feelings. I don’t know, exactly. But after over a year of research and debate, fraught with self-doubt and stirred by moments of wild hope, I ordered a sailboat. I live in Florida’s middle Keys, where, to the north, the gulf side “back country” runs right up into the Everglades. There are thousands of islands and many more species of wildlife to observe and photograph above and below the crystal clear surface. But it’s shallow. . . sometimes as little as 18” deep in the eddy streams and channels. Just south and east of my little island paradise, the Atlantic stretches across the reef and then the gulfstream to carry a sailor anywhere in the world. And because I wanted a boat that could sail safely in both directions, I settled on a Hake Seaward 26RK.

Right now I can’t say whether my passion for the wind will rise up like the Phoenix of old, or whether I just ordered a very expensive toy for my grandchildren to inherit. All I can do is wait for the factory to call.

Words Mean Something

“Words mean something.” The second I heard Rush Limbaugh utter that, I knew I’d have to quote him. . .even if they’re the only worthwhile words I’ve ever heard him say. In an age where “spin” is everything; or, at the very least, almost everything, has some spin on it, we have to listen carefully to the words. Spin is being used to serve specific insurance industry objectives, creating new impressions about legal matters that could ultimately effect your rights, your health, and your life.

I’ve discussed the term “medically necessary” before. It’s one of the earliest phrases created to dramatically decrease the amount of money the insurance companies must spend when you suffer an injury on the job. By getting lawmakers to insert that phrase in the worker’s compensation law of nearly every state, the focus of your “rehabilitation” automatically begins to shift from helping you get back to as worthwhile, healthy, and productive a life as possible, to providing the absolute minimum care necessary to keep you alive from one day to the next. . .with the full knowledge that your life expectancy will drop dramatically as a result.

In our "modern" health care environment, where more and more health care providers are acutely dependent on insurance companies for client referrals and billing completion, we have been hearing our doctors adopt the new language. There have, for example, always been two basic types of severe spinal cord injury: “paraplegia,” paralysis in the two lower extremities, and “quadriplegia,” paralysis in all four extremities. Quadriplegia, because of the far-reaching consequences of having no grip or finger function, has nearly always been considered a “permanent total disability” under most states’ laws. When no way was found to change that legal point of view, insurance companies began referring to quadriplegics as “tetraplegics” if they could raise their arms over their heads. We used to laugh at this because few if any doctors or judges bought into the suggestion that being able to move one’s shoulders was somehow like having one good hand. For twenty four years, no physician would refer to me as a “tetraplegic,” but relentlessness, money, and lobbying eventually paid off.

Some years back, I watched the video taped deposition of the director of a new regional rehab center who, after a ten minute cursory exam, had diagnosed me as a “tetraplegic.” Only when grilled under oath would he admit that, no, I had no practical use of the fingers of either hand. He reluctantly admitted having been an “expert witness” for the same insurance company “several times” before, and he consistently used insurance industry jargon.

Many spinal cord injured folks use a procedure called “intermittent catheterization” to empty their bladders. There are basically two techniques: “sterile” and “clean.” The sterile technique is more expensive; and, in the case of most quadriplegics, requires a trained attendant. But, in most cases, including my own, it helps individuals avoid introducing bacteria into their systems, thus cutting down on the number of urinary tract infections and kidney problems they experience. And kidney problems have traditionally been the number one killer of people with spinal cord injuries. Many individuals who use the “clean” technique do so because they cannot afford the other method. . .or because their insurance company won’t pay for it. When pressed as to why he was recommending that my caregivers be taken away and that I be forced to “self-cath” using the “clean” procedure, this doctor would only repeat the phrase: “It’s less burdensome out in the community.”

What do those words really mean? Less burdensome for whom? Certainly not for me. And are there really that many Americans in my “community” who are OK with Insurance company executive salaries (and bonuses), but want me to be sick more often and die much sooner? I hope not, but watching the news lately certainly gives one pause. In 1977 I received the “Ken Williams Sportsmanship Award,” a beautifully engraved plaque created to honor the memory of one of Orlando’s finest young wheelchair basketball players. I had the great privilege of knowing Kenny, and his wonderful smile and helpful attitude helped me learn how to live and play again despite my injury. Kenny, a poor young black man with no insurance, died in his twenties of kidney failure. He used “clean” technique because he had no choice.

I asked my lawyer: “Would that doctor recommend this for his son or daughter?” His answer was: “Of course not. He would never need to. But he is, what we call in our business, an ‘insurance company whore.’ He says what they pay him to say. If he doesn’t, they send their claimants to another hospital. They have him over a barrel.”

Words mean something. And if we don’t pay attention to what the words mean, whether we need treatment for spinal cord injuries, heart problems, or cancer, we may all be over a barrel before we know it.

Kicking Back

People who know me well have noticed that I inevitably gravitate toward the nearest wall. My Uncle Al always used to sit with his back toward the wall. "A good cowboy," he assured me, "never sits with his back to the door." I am not a cowboy, and my affinity for walls has nothing to do with bad guys and bar rooms. It's all about kicking back.

Life in a wheelchair isn't as easy as it looks. I know, all we do all day is sit down. How hard can that be? Depending on how high one's level of paralysis is, much of one's day is engaged in the business of keeping one's self upright and in the wheelchair. I am paralyzed from the chest down, for example, and all those lower torso muscle groups which would otherwise provide balance and support have been on vacation since a dock railing broke in 1975. So one hand, at least, is forever busy holding me upright. Unless, of course, I'm kicking back.

My first trip to Craig Spinal Rehabilitation Hospital in Denver was a revelation on many levels. For instance, every wheelchair user at Craig seemed to be cooler than I was, faster than I was, and everybody there was kicking back. Before I could master kicking back, however, I had to learn how to do wheelies, the art of balancing the chair on its rear wheels. Wheelies are helpful when dropping off sidewalks, popping up small curbs, or rolling down steep hills. The side benefit is the fact that when the chair is tipped backwards, gravity holds you in instead of trying to pull you out. In technical terms, it's the L.B.E., or "Lazy Boy Effect." Head back, feet up...where's the remote control? Anyway, once you master the wheelie, you can enjoy kicking back any time you want. All you need is a wall.

I used to think that any wall would do. I was wrong. My first mystery novel was published in 1991. I actually saw it in book form for the first time at the Midwest Mystery Convention in May of that year. It was stacked on one of the booksellers' tables, right there alongside a host of the great mystery authors...Dick Francis, Nancy Pickard, William Kienzle, Elmore Leonard, William Love, et al. I'd died and gone to heaven. I held my book. I fanned the pages ever-so-gently. I even sniffed it. By the time I rolled into an author panel discussion called "Humor in the Mystery" and looked for a place to kick back and enjoy, I felt like I'd finally arrived. Now, all I had to do was get readers to notice.

The only available wall was one of those fold-out partition jobs that hotels use to divide large rooms into not-so-large rooms. I pushed against it to make sure that it was fastened to the floor as well as to the ceiling. Once satisfied that it was, I popped a wheelie, leaned back against the wall, and locked my brakes. Several moments later, I was laughing--along with everyone else--at Nancy Pickard's witty remark about how one recognizes the difference between what is funny, and what is not. A split second after that, I was on the floor in the next room...without my trusty wheelchair.

The wall, as it turned out, felt secure only because a huge banquet table was leaning up against it in the next room. The vibrations caused by my laughter were enough to topple that table, and what several hundred startled people in the first room heard when it fell sounded much like an explosion. What they saw when they turned around en masse left them stunned. A laughing disabled man just disappeared. Right before their eyes. He was leaning up against the wall one second, then the wall swung out like a gigantic pet door, then the strange man was gone. The wall returned and an empty wheelchair lay on its back, its footrests pointing at the ceiling, proof positive that the audience's collective vision had not been a dream. Their dazed silence remained until I butt-scooted back in around the far end of the wall and said: "Now that's funny!" Then they laughed.

Well, 18 years later, I still kick back whenever I can--many wheelchair users do--though I tend to scrutinize each new wall a bit more thoroughly than I used to. Life, the Universe, and Everything is like that.