I Was An Eighth-Month Preemie . . .

. . . and I've been exhibiting Type A behavior ever since.

Not quite in the penultimate-to-my-half-century-year, I am already doing the "taking stock of my life" thing. Frankly, I do not like a lot of what I see.

Am I anywhere near where I thought and planned I'd be at this stage of my existence? Not hardly. And there's no one to blame for it--for a chronic and debilitating (and ultimately fatal) pulmonary disease of unknown cause and no known cure has brought me low. What's even worse is that I was exhibiting symptoms of this insidious disease for a good 5 (count 'em, FIVE) years before I was (finally) diagnosed correctly. But is anyone willing to take that into consideration and cut me a little slack for my admittedly somewhat aberrant behavior while I was seriously ill but didn't know it? Of course not. That would take something rare, like compassion, maturity, understanding, or even kindness.

My house is full of "durable medical equipment." I have a bi-Pap machine in my bedroom, so that I can breathe and get supplemental oxygen while I (try to) sleep--in my home-use hospital bed-- with a mask plastered over my face. I have a nebulizer (with meds) and a pulse oximeter in my bathroom so that I can open my bronchii while awake and make sure I'm getting enough oxygen then, too. I have a blood pressure cuff. I have a portable electric oxygen concentrator and 36 tanks of compressed air oxygen in my office in case my weekly liquid oxygen delivery is late. I have two 4' tall liquid oxygen tanks in my foyer (too heavy to carry upstairs), along with two portable liquid tanks so that I can leave the house. I have a portable compressed air delivery device (and another portable compressed air tank) in my car in case I am away from home and my portable liquid tank runs dry. I have an exercise bike, free weights, a treadmill, and an ab-cruncher in my family room to maintain some level of fitness in the face of not being able to breathe.

I have a motorized wheelchair that I am supposed to use when going out and about. Since my car is not big enough to carry the thing, however, I hardly ever leave home unless absolutely necessary. And I can't afford to buy a minivan so I can transport the wheelchair, either. At home, I am tethered at all times to a 50-foot length of oxygen tubing so that I can get the liquid oxygen from its big tanks into my lungs. When using the portable tanks, I have a 7-foot leash. Not to mention 15 different prescriptions I must take that my pulmonologist and general practitioner have determined are necessary to maintain my life in some state remotely resembling normal. My full-time job has become coping with this stupid disease and managing the medical and financial problems it produces.

The irony in all this is that I am a life-long non-smoker. When I am feeling relatively strong, it doesn't bother me that people stare when I am out and about with my portable oxygen tank. [We held a contest at my last outside place of employment to name it. The winning entry was Mannheim Steamroller, because "it gives me Fresh Aire." Now that's a pun that Omaha-area denizens can appreciate!--Ed.] When I am not feeling particularly strong, however (which is most of the time) but I have to be out doing things anyway, it hurts like hell to see the accusation in the starers' eyes: "You must have done this to yourself. You are too young to be in such dire straits unless you yourself caused it. Shame on you."

So I make (lame) attempts to bring up at every opportunity that I don't (and didn't) smoke, and that this disease has no known cause . . . or cure. Imagine, feeling guilty for being sick! How utterly American of me! [Yes, I, too, have fallen victim to the myth of the Right Wing: in America, you can always go as far as you want, and if you don't get there, you have no one to blame but yourself.--Ed.]

As if that were not enough, the presence of the obviously disabled in this society is still mostly not welcome. Omaha is just now planning to cut curbside access for wheelchairs in its sidewalks. How long has the Americans With Disabilities Act been in effect? Far more than 10 years. What took the city so long?

A recent article in the Omaha World-Herald described how people still discriminate against the physically disabled in the workplace. The presumption is that healthy people think (perhaps subconsciously) if someone with a physical handicap can do the same job those healthy people are doing, it somehow reflects badly on the healthy people. So the healthy people don't want the disabled around and thus do everything they can to make the disabled feel unwelcome . . . that is, if the disabled get in the door in the first place. Anyone who is disabled and who loses a job finds it nearly impossible to get another one. I can vouch for that from personal experience.

Moreover, in so-called "right to work" [read that "right to be unemployed," or "right to keep unions and other pro-labor assistance out"--Ed.] states, like Nebraska, someone with a disability can be fired even if the disability is the (real) reason and nothing can be done about holding the employer liable for violating the Americans With Disabilities Act. As long as the employer can come up with some colorable reason ("we weren't making enough money and thus had to cut staff," e.g.), the fired employee has no grounds to complain. The employment contract was considered "at will" for both employer and employee, so the employer has the rights and the employee has the right to get screwed.

I thought the legal fiction that one lone employee came to the bargaining table with equal power to the giant, multinational employer had been thoroughly discredited. But "conservatives" no longer want merely to conserve. They want to undo. We are being forced back into the 1890s, in labor law, tax law, environmental law, food and drug safety law, corporate law, and every other business-impinging kind of law you can imagine.

Many healthy people don't want the disabled around in their restaurants, either. I can (but I won't, unless you ask) tell you several personal horror stories of substandard treatment I've received since being hooked to my oxygen tank, in places I previously attended regularly with no problems while I was not obviously physically disabled. And yes, I make a point of never going back . . . and of notifying the management of why . . . when I can. The staff at one place I went even refused to give me a customer comment card. Claimed they had no such thing.

Right. Want to buy a bridge?

Yet the support group for women with my particular lung disease is full of happy, shiny people who are so grateful to the group for its help and emotional assistance. Of course, they all have spouses and others who didn't run screaming in the opposite direction, which means they had emotional support and financial stability, too. And the group raises money strictly for research. "Can't help anyone directly. It would be too complicated to decide who needed help." Or so says the group's founder. But as I keep telling her, all the medical research in the world isn't going to help me if I am not alive to see it implemented. Limiting direct help to a "rah-rah" cheerleading effort is NOT particularly helpful to my continued existence. Or maybe that's the point. Maybe my continued existence is not important.

***sigh***

I apologize. Most of the time, I keep my perspective. But when I am tired, and broke, and there are bills due that I cannot pay, I sometimes slump. Today, I am slumping. I saw a piece on ESPN the other day about a young man who became a quadriplegic due to a sports injury. His attitude and mine coincide in remarkable degree. He, too, said most of the time he was fine, as he was too busy doing what needed to be done each day to spend time moaning and complaining and bewailing his fate. But there were days . . . and what he wouldn't give for a weekend off! I second THAT emotion.

And so while I regret the "never-weres" and "might-have-beens" of my life, I do not often have time to reflect on them. There's too much to do every day, even if that comprises merely feeding the cats and getting dressed. I have a mug that says, "God put me on this earth to accomplish a certain number of things. Right now I am so far behind that I shall never die." In that spirit, every time I get one project done, I pick up two more to do. I am not going without a fight. You can't get rid of me that easily!