Just Keep Your Mouth Shut
When I was first diagnosed with Multiple Sclerosis, I carefully considered my options and decided to be an idiot. I talked it over with my late wife, pondered, meditated, prayed, and then settled on the stupidest possible course of action, short of bee sting therapy. (Yes, there are people who believe that allowing bees to sting you is an effective treatment for MS. - No, I'm not kidding.)
The actions I attempted to take might not have been foolish for somebody else. In fact, I know people for whom this plan works. It was dumb because it just isn't me.
You see, when you have an illness which is never going to go away, and which will probably affect the lives of those around you, you have choices to make about how you're going to identify yourself. Some people like to keep their illness to themselves as long as they possibly can. Some people tell everybody they know.
I tried to do the former, but I'm a latter type of guy.
I told my late wife that I didn't want to be identified by my illness or disability. I supposed it would be easy to simply pretend it wasn't there and not mention it until I was ready to become a professional Stephen Hawking impersonator. I was thick-headedly missing two facts. One, that it was pretty obvious looking at me that something was wrong. Two, I am not a secret keeper. I tell all kinds of personal things about myself and worry about the consequences later. My resolve to be a secret sufferer lasted about two hours. I went to a convenience store where people looked at me strangely when they saw me walk. I felt compelled to explain, so they wouldn't think I was drunk.
From that moment on, I was "out."
There are advantages to being "out," regardless of the nature of one's problem.
I used to date a woman who was blind. Like most people with that problem, she felt compelled to describe herself as "legally blind." I don't understand that. What does legality have to do with it? It sounds to me like they are apologizing for being able to see light or large shapes, but still trying to get the point across that they'd be in trouble without some help.
Whatever the case, this woman usually pretended to be able to see. I had been talking to her for more than two hours, the day we met, before she told me she was blind. It came up during a discussion of my disability. I have wondered how long she might have waited to tell me if she didn't have that opportunity to easily mention it.
She was good at faking it. She had all types of coping mechanisms and tricks down pat. She could see people's feet moving, so she'd follow people through crowds by watching their feet. She counted steps, listened for echoes in corridors and a hundred other things to get by. All of which were excellent coping skills, but she also used them to attempt to keep her blindness a secret.
She had a white cane, glasses and a magnifying eyepiece, but she avoided using them. Her reasoning was that people might think she could not do for herself. That may sound strong and brave at first, but she was paying a price. She was not getting what she wanted out of the world.
For example, when we went into a restaurant she would not allow me to read the menu to her. She supposed that other people would overhear, and know she was blind. She wouldn't let the waiter help, either. She'd pick up the menu and pretend to be reading it. When the waiter approached and asked for her order, she would ask him "What item on the menu do most of your customers like?" Then, no matter what the waiter had described, she'd ask for that. She was robbing herself of the chance to select food she was likely to enjoy just so nobody would know about her disability.
That was her right, of course, but I never understood it.
Similarly, I know MS patients who refuse to use any type of visible walking assistance. They'd rather stagger and fall than let anybody know. My experience has been that people are far more helpful and accommodating if they are aware of my problem. It would feel wrong to me to refuse to allow anybody to know I needed help, and then be angry with him or her for not helping.
This open approach is the reason I have spoken freely in this column, as well as in day-to-day life, about MS, and how it has altered my life. Until recently, I believed that I had done all the thinking my situation required. I didn't think there were any more decisions to make.
I realized I was wrong about that when I was yet again teased by insurance providers. My insurance, like others on disability, is Medicare with a "Part D" plan. Every once in a while, somebody in a doctor's office or insurance company succeeds in getting me approved for the medications which will not cure MS, but which might make my case less severe. I always tell them not to bother, but they don't listen. They call me with joyful news of my approval, and I ask them what the co-pay is going to be. They look in the file, and sadly announce that the co-pay is somewhere in the neighborhood of $1,800 every month. All I can say, at this point, is "Thank you for trying."
That happened again, recently, and it was the first time I really understood that I am never going to be able to get the medicine I need. The candidate I support for POTUS has a plan that would enable me to receive the meds I need, but I believe there is a greater chance that Michael Jackson will win the Met-Rx World's Strongest Man contest than there is that any comprehensive health insurance plan will ever be passed.
The last time an effort was made, pharmaceutical companies, insurance companies, hospital corporations and other satanic forces got together to quash it. They held focus groups and discovered that the thing most people feared about any sort of national health insurance was that they would not be able to select and see "their own doctors." Never mind the fact that there was nothing in the proposed plan that would have prevented people from seeing "their own doctors," they spotted this fear, flew out of Pandora's box and flooded the airwaves with "call your congressman" ads which featured old ladies whining "But, I want to see my own doctor." The ads didn't exactly tell the lie that, under the proposed plan, people would be sent to black-hooded druid herbalists they'd never met, but the whining crones left that impression. So died the last, best hope for civilized health care in this country. If he is elected, I don't want Senator Obama to even try to pass a plan. The old forces of greed and evil will rise up again to smash it, and he will have wasted a lot of political capital that could be better used to perform some other radical act, such as once again governing according to the Constitution.
The medicines I need are, depending on the formula, between 30% and 66% effective at lengthening the time periods between MS relapses and lessening their severity. That's not all that great, but it’s all there is.
It wouldn't matter if they were 100% cures. I still could not afford them. If I adopted an ascetic life, sold the car, sold my fried and powdered balls to a voodoo supply house and fed my children sawdust, I might be able to pull it off. I don't do that because my children's needs are paramount. So, I raise them as normally as I can, and hope I won't have a relapse that really does me in…
The realization that I will never get the care I need causes me to worry. I worry about what will happen to me. MS is so unpredictable that I wouldn't be surprised if I woke one day to discover that I was now leaving a mucous trail wherever I went.
I wonder if I'll lose what is left of my ability to walk. (Probably.)
I wonder if I'll lose what remains of my eyesight. (50/50 on that one.)
I wonder if I'll lose my ability to speak. (That's about the most disturbing one.)
Then, sometimes, I remember a patient I worked with during clinical practice in school. He was about my size (6'2"), with a barrel chest and legs that appeared to have once been very powerful. He was end-stage, chronic-progressive Multiple Sclerosis. He could not walk. He could not talk. He could not move any part of his body except his eyelids, which blinked. He was bedfast and on a ventilator. Not only could he not move his limbs, nobody else could move them, either. They were locked in spastic paraparesis, which means that they were constantly flexed to their maximum. His muscles could not relax, so his arms and legs felt as though they were carved from wood. I don't remember his name, but we'll call him Mr. Kaw-liga.
Periodically, we would have to bathe Kaw-liga. These baths were elaborate undertakings involving six or seven people at a time. He'd have to be disconnected from his ventilator and "bagged." (That's when you squeeze air into the patient's lungs with a hand-held Ambu Bag. We didn't stuff the poor man in a gunny sack.) He would then be rolled onto a sling. The sling was attached to a specially made crane-like device that we rolled into the shower. There, several people would wash him while one continued the bagging at the proper rate.
Because I already knew I had MS, and was a little bit shaky, I was the one who always did the bagging. I was always there; closest to his head and squeezing that bag the best I could because it was the only thing keeping him alive.
I was always close to his head while I was doing this, so I had the chance to look into his eyes. His eyes were a vivid green, but that was not what made them riveting. I couldn't stop looking because I saw the light of his intelligence in them. His eyes didn't drift or roll around. They didn't have a faraway look in them. They didn't stare through you without focus. His body didn't work, but his eyes looked right back into mine. I may have been reading too much into what I saw. I'll never know. There were no accompanying facial expressions because his face didn't move at all. He couldn't frown, smile, grimace, scowl wrinkle his forehead or move an eyebrow, but I could swear I saw thoughts and emotions in his eyes.
During the showers, he seemed to be afraid, which makes sense. Who wouldn't be afraid being pushed around a hospital, five feet off the ground in a wobbly sling?
When he was back in his bed after a shower, or when I suctioned his airway, he looked grateful.
Just as I write this, I remember why I might have been seeing these things in his eyes. One of the staff physicians had told me that Mr. Kaw-liga's intellectual capacity had not been harmed at all; that inside that prison of a body was a sentient, cognizant human being.
I thought it must be hellish for him to live that way, so I tried to anticipate his needs and explain to him what I was doing to meet them. People talked about him, most of the time, like he wasn't in the room, or as if he was a fern. He might have been in there - in his paralyzed body - wanting to scream "No, you fools! That is not what I want you to do for me!" He may have wanted us all to stop babbling all the time so he could think. Whatever he wanted, he had no way of telling us.
There were other students in my program who frequently told me that I didn't have to help with Old Kaw-liga if I didn't want to. At first, I didn't know what they were driving at. After the fourth or fifth time, I asked, "Why do people keep saying that to me?"
I found out that they were all concerned about my feelings because I had MS, and so did Kaw-liga. They thought it might be tough for me to take, seeing him in such terrible condition with the same illness I had.
It didn't have any negative effect on me at all, I told them, and I was telling the truth. Kaw-liga was so far gone, so disabled, so sad a case that I felt no connection to him at all. Comparing my condition to his, or even seeing a connection between us, would be like comparing myself to Eric Clapton. I play a guitar and Eric plays a guitar, but there is no comparison. I strum a few chords, but Eric Clapton is a wizard. He is so much farther down the road than I am that I don't see us as even being the same species, musically speaking. When it came to MS, Kaw-liga was the Eric Clapton of suffering, and I was a novice, inviting my parents to my first recital. I hated to see him in torment, but it was his torment, not mine. I saw no connection between us, other than both being people. I couldn't see myself becoming as ill as he was any more than I could see my brown eyes turning as green as his.
Shortly after leaving that hospital, I heard that Kaw-liga had died, and I was happy for him. I knew it must have been an exquisite form of pain to be trapped in a body that could probably see, certainly hear and think, but not express a single thought; an exquisite form of pain I would never have to endure.
Now that I know I will not be able to get the help I need to lessen the chances of it, I frequently imagine myself in Kaw-liga's position. It's a real possibility.
For a while, I was telling everybody I knew that, were I to be in that condition, I wanted them to kill me. They'd always ask if I had a living will or a DNR order. It was difficult to convey that I wasn't talking about resuscitation. I wanted them to put a gun to my head and shoot me.
You can imagine how enthusiastically my loved ones greeted this request. To date, none of them have had the common courtesy to agree to blow my brains out.
Being a fan of Poe, O. Henry, The Twilight Zone and Alfred Hitchcock Presents, it didn't take long, after asking my loved ones to shoot me, to come up with an ironic twist.
What if I found out I actually enjoyed being like Mr. Kaw-liga?
What if I was lying there, grooving on my situation, when somebody I had asked to slay me works up the courage to honor my request?
"No! That's my favorite episode of M*A*S*H on the TV! Not now!"
My life, after all, is like those of most people. It is an endless series of "have to's". I have to do this. I have to do that. One kid needs to be one place; the other two need to go somewhere else. These people have to be paid; the other people must be reminded that they have not yet paid. "Must, must must, have to, have to, gotta, gotta, gotta, act now, before it's too late, this is an attempt to collect a debt, blah, blah, blah, would like to meet with you regarding your child's behavior, we really need to get together, sometime, must-blah-gotta, should-blah-gotta, why didn't you-blah-gotta?"
Suppose I was free of all that! Suppose I didn't have to do any of it because I had the best excuse in the world, next to being dead: "I can't do that because I am paralyzed."
"I'm sorry my son stole your car. I'd have prevented that had I not been being fed through a tube."
"I'd love to be at your twelfth anniversary party, and give you an expensive gift, but there is a strict rule against catheterized people at Bed, Bath and Beyond."
"Gee, I would have returned those books on time, but I was busy shitting into this rubber bag attached to my side.”
"You know, I'd love to forward your e-mail about how Barack Obama is Muslim, whitey-hating, unpatriotic, puppy-killing child molester to everybody on my list, but I can't because my fingers are too paralyzed to even give you the emphatic, two-handed flipping off you deserve."
For the first time in my life, I'd be free of any expectations whatsoever. Nobody could demand or ask anything of me. People who love to argue would have to find somebody else to argue with. My mother could no longer keep me on the phone for hours at a time. People who think I belong to the wrong political party or religion would have to be quiet and dog somebody else. People who think I should have sought cures like bee stings, Mannatech, acupuncture, giving up diet drinks or having my fillings removed would have to keep it to themselves now. Those who believe that everything that happens to anybody, anywhere, is part of a cosmic conspiracy would prattle on to somebody else.
I'm not describing Eden, here. I know that life would, at times, be unpleasant, such as when I might be lying on my balls and can't tell anybody to move them. I'm just thinking out loud about how life might be more tolerable than I ever imagined it could be hooked to a machine that breathes for me.
In fact, a long way from asking everybody who'll listen to off me, I have now compiled a list for my friends and family to follow that will make "My Life as a Log" as good as it can be. I have been honing my skills at astral projection, so I can leave my body and torment anyone who ignores my wishes, or alters them to suit their own needs.
I publish my desires here for the first time, so there can be no misunderstanding.
Even if I am blind, I can still enjoy movies and television, music, movies and almost anything else. Cox Cable has a system for the visually impaired that actually describes the action onscreen in a quiet voice. It doesn't interfere with the dialogue at all. A voice like the one that used to announce the passwords of Password tells you what is happening. The script might say "Daddy! You don't understand! I'm seventeen, and I want to make my own decisions!" The Password voice is saying "George Lopez's criminally hot teenage daughter flounces out of the room, slamming the door."
There are also plenty of shows I can enjoy, even if I can't see them at all, either because they don't require visuals or because I have seen them so many times. Right off the top of my head, I can think of Family Feud, Meet the Press, Countdown, M*A*S*H, Leave it to Beaver, The Andy Griffith Show, Monty Python's Flying Circus, Cheers, The Young Ones, Northern Exposure, Picket Fences, The Wonder Years, Headline News, Frontline, Nova, David Letterman or any stand-up comedy show.
If you allow any "reality" show, especially the ones on MTV and VH-1, to penetrate my BS defenses, I will astrally project myself into your kitchen and spirit-piss into your General Foods International Coffee.
When it comes to movies, think of the ones I have watched a million times. The Color Purple, This is Spinal tap, Tootsie, Roger and Me, Stop Making Sense, Little Big Man, The Graduate, Inherit The Wind, Guess Who's coming To Dinner, Bringing Up Baby, His Girl Friday, The Secret Policeman's Ball, The Last Waltz, A Hard Day's Night, Harold and Maude and Citizen Kane are all good examples.
If any of you try to exploit my captivity by making me watch or listen to Star Wars, Red Dawn or Ghost, I will patiently wait until I am dead. Then, I will haunt you. I will rattle chains in your closet, moan at your houseguests and make your children cry.
I'll want music...lots and lots of music. All of you know the types of music I like. I'll want The Beatles, Barenaked Ladies, Melanie, Phil Ochs, Bob Dylan, Arlo Guthrie, Neil Young, Faces, Eno, The Who, Nakai, Paul Thorn, Miles Davis, Erik Satie, Chris Kelsey, Blondie, Shakira, Linda Ronstadt and all the other folks you've heard me play ad nauseum over the years. Remember, though, Abbey Road is now my second favorite album, not my first. First is The Beatles' LOVE.
If you play anything by the Captain and Tenille, Helen Reddy or the Bee-Gee's, I will project myself into your dog, hump your grandma's leg, lick myself in an unseemly manner and eat my own poop right in front of you. (If your dog already does all of this, I'll have to think of another way to torment you.)
Books on tape will be a must! Nabokov, Brautigan, Alan Watts, Poe, Dickens, the Tao te-Ching, The Bible, Vonnegut, Sue Townshend, Thurber, Basho, Mishima, Roberto Arlt, Shakespeare, Gerald Posner, Booth Tarkington and whatever history and philosophy you can find should fill the bill nicely. Please, though, nothing that starts out with "Chicken Soup For The...." Anything that banal should be read to me by Lucy Pinder, Sora Aoi or Gabrielle Union live at my bedside. That'll make it a lot more tolerable.
Speaking of women. I am hereby announcing to whatever woman finds herself in charge of my naughty bits at the time: You do not need permission to climb aboard. (You should read The World According To Garp, I suppose.) Just shove a Viagra down that plastic tube that runs into my side, wait a half hour and "cowgirl up"!
I promise I won't mind.
The most important thing, though, for those who wish to ameliorate my suffering, is to watch what you say when you are in my room. I expect to hear people who visit talk about how sad my condition is. I'll be disappointed if they don't. There are some people, however, who had better keep their mouths shut.
If you voted for, or support, George W. Bush, keep your mouth shut.
If you voted for, or support, John McCain, keep your mouth shut.
If you ever made the asinine claim that national health insurance would be a bad thing because "That's what they have in England/Canada, and look what a mess they've got," keep your mouth shut.
If you've ever described national health insurance as "socialized medicine," keep your mouth shut.
If you're one of the people who called your congressman because you wanted to keep "your own doctor," keep your mouth shut.
If you vote for Republicans because their intellectually bankrupt calls for tax cuts and "trimming the fat out of government" as solutions for every problem appeal to you, keep your mouth shut.
If you're less concerned about providing health care for all citizens than you are that some sheep herder in Gitmo is going to get himself freed on a habeas corpus writ, steal your R. V. and drive in into a Wienerschnitzel, keep your mouth shut.
If any of those descriptions sound like you, you can keep your mouth shut because you will be partly to blame for the fact that I am lying there. All the years you will have claimed to love me, yet supported politicians who didn't give a damn if people like me live, or how we live, will be years you helped hook me to that machine. Every time you will have allowed some contemptible, greedy, slimy, power hungry gas bag to exploit your fear in the "war on terror" will have been a time you voted for me to go without the medication that might have prevented me from having to be bathed in a sling. Every time you will have spread nonsense to others about the health care crisis because you never bothered to learn facts will count as a time you chose to remain ignorant because it was just easier.
Should I find myself lying before you, smelly, naked and unable to tell you even one interesting thing that pops into my head, I will be the most obvious person, but not the only person, you know in a health care crisis. If you know ten people, you know at least three who are in that bed, or could easily and quickly be there. Perhaps those three people are people you care deeply about, but you never could see how your own political actions and beliefs could affect them.
It would be no surprise. That's what modern "conservatives" do. They revile the social contract. They don't want you to see the "guvmint" as "me" or "us." They tell you government is the enemy; a horrid, tentacled, family-eating beast which must be destroyed. They want you to see social action and government as something "other" and alien. If they get you to abandon the social contract, then they can get you to cede control of your country and your life to them. After all, they're protecting us from the bad guys, aren't they?
When you surrender that control, that involvement, you've given them permission to force your son to kill or die just because they think he should. They've got you scared of what might happen if he doesn't.
When you surrender your intellect and choice because they have you frightened into believing that economic issued are something only they can understand, you give them permission to allow their immediate circle of friends to steal your pension.
When they frighten you into believing that any change in the way health care in administered in this country will result in long waits and chaos, you have given them permission to tie those dear to you to a bed so their buddies in the pharmaceutical industry can maximize their cost benefit ratio of investors, instead of patients.
No, if you've spent your adult life giving those bastards whatever they wanted, don't stand by my bed and talk about how sad it is. The cruelest thing for me to take will be the fact that I can't use an arm to slap you upside the head.