Today it occurred to me it’s exactly 20 years since I caught the pneumonia that almost killed me. Okay, it didn’t start in October. It started in November. But the percursor to it started in October, with the kids and Dan catching some form of stomach flu. Since younger kid was then just short of one, and his brother was three, stomach flu meant piles and piles of clothes and BED CLOTHES to wash and more often than not carpets to clean. I was running the carpet cleaner continuously, I was running the wash continuously, and yet there were piles of smelly sheets in a corner of the laundry room.
Then Dan caught the respiratory bug going on at work. I — seemingly — didn’t catch it. Usually you know when I’m sick, because I cough constantly. I wasn’t coughing at all.
I just felt exhausted. In fact, driving Dan to one of his doctor’s appointments, the doctor said I looked sicker than Dan.
By November it was obvious I had SOMETHING. I thought it was one of my bad asthma attacks. While making food for the Holiday meeting of our writers’ group, I had to keep drinking coffee, which seemed to help my breathing, which tracked to asthma.
By late December I gave up. As in, doing anything at all became too much work. It took me an hour to dress, because I’d put on a piece of clothing, then rest, then put on the other. And I was spending most of my time on the sofa, which is why we asked one of my friends to come mind the kids — as mothers of small children know, minding small kids is an athletic endeavor — because I couldn’t.
And then on the eleventh of January — fortunately early morning, while Dan was home, because I don’t know what my friend would have made of it, I got up to go to the bathroom and collapsed in the hallway.
Dan found me passed out, freaked, threw me in the back of the car, and drove me to emergency (after getting someone to stay with the kids.)
When I got to the hospital, my blood oxygen levels didn’t register. I walked in, and they said they’d never seen anyone below 65 walk in. They admitted me. Where, if my blood oxygen levels hadn’t been so low, they’d have thought I was an hypochondriac, because my x rays showed NOTHING in my lungs. (Later it became known that form of pneumonia was intracellular — i.e. the space between the cells.) OTOH they could HEAR liquid in my lungs.
The emergency room doctor who admitted me had been seeing a lot of this and made the decision in about 5 minutes. He gave me intravenous zitromax (sp?) then a new drug, and put me on oxygen. For about two days I sort of recovered, slowly, then I got treated by a group of five doctors.
And then things got “fun.” They decided my white blood count wasn’t high enough for the problem to be an infection. They took me off antibiotics and wanted to give me steroids. I refused the steroids, because certain types of infections get worse with them (which we knew from our cat.)
I kept getting worse, including coding in the middle of one night, and having a heart attack during a broncoscopy. (I told them not to give me atropine when my heart was already enlarged and I was tachycardic. Don’t they read Agatha Christie?)
After which I was in ICU. For eleven days.
The pulmonologist wanted to do a lung biopsy. My sister-in-law who is a pathologist in Portugal, was in constant communication with my husband and said given my state at the time, a lung biopsy would kill me.
So, Dan refused to sign the consent and told me not to sign the consent.
Now, I was somewhere between life and death, floating in a weird space in which my then 2 and a half years dead grandmother came and sat with me.
Our kids were being watched round the clock by a group of volunteer friends, who spelled themselves, as though they were family, so these little kids were never without someone.
However there were gaps. Our friends had jobs and obligations. So, sometimes, Dan had to leave me (greater love has no man than he who sleeps for almost a dozen nights on the floor of an ICU room, on his coat, in the middle of January) for an hour or so.
When he did, the doctors came. The pulmonologist told me I should have the biopsy, for instance. I told him my SIL advised against it in my condition, as chances were I’d die.
He told me, yeah, it was a high risk, but so what? In the state I was in, I was no good to my husband and kids, and besides, what was I? A house wife? I wasn’t much help to them anyway, and think of how much money I would save my family by dying.
I signed the form.
Dan came in as they were prepping me, threw the mother of all fits, pointed out I was not competent to sign anything and threatened to sue them to their back teeth. Then he demanded they give me antibiotics again, the antibiotics under which I had improved. They said no, and he said, that’s fine, we’re going to the other (the Catholic) hospital in town. And he said, “Honey, put your clothes on, we’re going.”
This is one of three times my husband has given me a direct order. I wasn’t at all sure of the advisability of obeying, but I did promise to obey, so as he handed me my clothes, I sat up slowly and started dressing. Keep in mind, I was tachycardic and my heart was enlarged.
The doctors freaked, and told my husband they’d give me the antibiotic, but it wouldn’t do any good, because it wasn’t an infection.
For the next three days I got the antibiotic in IV — yes, that same antibiotic you get five little tablets of, and that’s it? — and it burned the IV sites after a few hours, so that they moved it constantly. Three days later, I looked like an addict with track marks.
And four days later I walked out of the hospital under my own power because I was too well for the insurance to pay for my bills any longer. I stayed on oral dose antibiotic (yes, that same one) for a month and a half, but six months later I was well enough to prep and stage a house for selling.
Two years later I made my first novel sale. Nine years later, I home schooled younger son, who would otherwise have dropped out of sixth grade and probably never opened a book again.
For the last twenty years I’ve cooked, I’ve cleaned, I’ve refinished furniture, sewed clothes, and generally made our lifestyle the same as that of a family with two normal incomes. Oh, and I’ve written 23 books which got published. I don’t know if those count, but at least one of those got me a fan letter from a lady saying it had kept her sane through cancer treatment. (Weirdly? The book was Plain Jane.) She got an autographed copy by return mail, of course.
The above story is relevant for various reasons. First of all, and unlike some people who have written on Sir Terry Pratchett’s saying he planned committing suicide, I don’t judge people in that situation. I don’t judge, because I’ve been there and when I signed that consent form, it was more or less what I expected. Now, I wasn’t competent, but people who are terminal by definition aren’t competent.
Also, I’ve seen two friends die of cancer. It’s an ugly, slow death. One of them was one of dad’s best friends, and it was an open secret the doctors put him down when the family couldn’t endure it anymore. The other was my friend Alan, Dan’s best friend, now dead almost a year. He died naturally, but it was also a slow, agonizing death.
I don’t hold it against any family members who, when hope is gone, wish they could relieve people of their suffering. We do that for our pets. (Though my family is really bad at it. We’ve lost 4 cats, and only two were euthanized, one for constant pain beyond our power to relieve — his kidneys failed — the other because cancer fused her jaw.) And I understand the desire to “make it stop.”
But — yes, there is a but — there is a Second of All.
Second of all, I am sternly against legalizing medically assisted suicide. For the same reason I don’t judge people and the decision they choose to make, it is power I don’t think we should put in doctors’ hands. Doctors have authority and power, particularly when you’re ill, and too many of them seem to make strange judgements on human life, like the one who tried to convince me my family (and please keep in mind we had an infant and a toddler) was better off with me gone.
After all I was “just a housewife” and therefore making no contributions to the family.
When you’re sick, and if you’re like me and fight the black dog ALL THE TIME anyway, you’re likely to be depressed, and it’s very easy to tell you the world is better off without you, and there’s no hope.
It was all too easy to convince me of this, and if I hadn’t had a husband and friends who thought I was valuable and needed, I would have died then. I don’t know if my contributions since are worth anything in the grand scheme of things, but at least my contributions to my kids have been important and irreplaceable. But I couldn’t see it, so I was at the mercy of strangers with their prejudices, except for a husband and friends who cared.
Which brings us to this article sent to me by one of you.
I can hear some readers saying, “Who?” Maggie Karner had the same brain cancer as Brittany Maynard, who became an A-list international celebrity for announcing she would commit assisted suicide.
The out-of-state proponents of the bill regarding physician-assisted suicide suggest having the ability to end your life legally is comforting. But I can tell you from personal experience that it is nearly as troubling as the cancer itself. You see, I get strength and comfort from the knowledge that nobody is going to give up on me — medically, psychologically or holistically. Right now, I have the firm support of the state and my fellow citizens in my desire to live — no matter the cost or burden. If that were to change, the tiny knowledge that I might be straining my family, friends, doctors or community resources unnecessarily would be a heavy burden. The constant “option” for suicide would wear at my resolve and I fear, become an unspoken “duty” for me and others.