Why isn't she here?


The last thing Stephanie and I said most nights was, "I love you" or "Good night," which meant the same thing. "Good night, Doug. I love you." "I love you too, Steph. Sweet dreams." It seems totally trite to type it, but spoken aloud between us, it was a warm, reassuring way to end the day. It meant a lot to us. It meant more than I understood while she was alive.
For the first month or so after Stephanie's death, I never said good night. There was only the cat to say it to, and anyway, I was barely and rarely sleeping. I'm sleeping better lately, sometimes even without pills. There's still no-one to say good night to, and there never will be, and yet I've started saying it again. "Good night, Stephanie. I love you." It's sad and silly but soothing, saying such words as I click off the lights and pull up the blanket.
* * * * * * * * * *
Not always or even frequently, but sometimes I still dream that Stephanie is alive and well and at home.
In my dream last night, we were talking about what to have for dinner, and I volunteered to cook, and she volunteered for me to not cook. I'm a lousy cook, and she wanted something good to eat. But she settled for cereal.
I was surprised that there was cereal on the shelf — I never eat it, never buy it — but I wasn't surprised that Steph was in the kitchen, walking around and hungry, and that she wanted some Rice Chex for dinner. She often ate cereal, and sometimes had Rice Chex for dinner. It's mild, which could be perfect when her belly wasn't going to be happy with anything beefy or fishy or chickeny.
When I'm awake, I'm months past expecting Steph to be at home with me, but in dreams like this she's so very, very much still my wife, still Steph, still happy and stubborn and walking, and wanting to do something fun this weekend. The dreams are never complicated; it's just Steph being Steph, and she or we are doing things we routinely did — a picnic at the park, a drive to nowhere in particular, or in my best and very favorite dreams, we're having a conversation. Any of these dreams are delightful. It's waking up afterwards that sucks.
It never hits me like a sudden storm; no, it takes time before I understand. First, I reach out to her but she's not there, and I wonder where she is. For so many years she's always been there, always, whenever I wake up. So — huh? It just doesn't make sense; there's nowhere she could be.
Did she work late? No, she sometimes worked overtime, but never so late that I'd fallen asleep.
Did she take a trip without me? That happened exactly once, and it only lasted a few days, so — no.
Did we have a fight and she'd stormed home to her mother? That happened never, only in sit-coms on TV, so — no.
Then, as reality begins dripping in, I wonder if Steph might be sick in the hospital, but even that doesn't make sense, because if she was hospitalized, I'd be sleeping in a chair next to her hospital bed — so again, like always, when one of us woke up the other would be there. But I just woke up, and she's not here. It's a mystery, and I don't like it, and I'm not sure where she could be. Why isn't she here?
It takes several minutes for my feeble mind to work its way through these questions. Every time.
* * * * * * * * * *
Sometimes I ask the same question — Why isn't she here? — when I'm wide awake. Did Stephanie, at least on some level, die on purpose? The first time I asked that question, my immediate response was NO! All caps, italics, with exclamation point. She loved the heck out of me, and there's no way she would've left if she'd had a choice.
But there is more to it than that. With all of Stephanie's health issues, we had discussed whether life was worth living, and worst-case scenarios, and all that horrid stuff, in depth. Many times we talked about death, and sometimes about suicide. That's how bad the hemodialysis was.
How can I convey the horror of it? Hemodialysis required Steph to be at the kidney clinic early in the morning, every Monday, every Wednesday, and every Friday. While she was there she was often treated coldly, sometimes treated rudely, and always treated as a patient — and she hated being a patient. She usually felt physically ill, beginning the moment she was hooked up to the dialysis machine. The procedure regularly made her dizzy and nauseous. She hated every minute of it, and it took four hours, and after every treatment she was exhausted and had to sleep — so her day was over, even though she'd only been awake for a few hours and those hours had been awful. In a very real sense, then, dialysis swallowed three entire days, every week.
So yeah, several times she said, "I'm not sure life is worth living," and on especially bad days — in pain, or in the hospital — she occasionally said in so many words, "I wish I was dead."
Let me clarify this: Steph didn't bring up suicide often. She mentioned it exactly three times during the year and a half she was on hemodialysis. "I wish I was dead" was a line she used only at her bleakest, most miserable points — perhaps half a dozen times over the course of several years. She certainly never attempted suicide; she was just blowing off steam. And I tried to talk her away from even saying such things, tried my best to make something worthwhile out of the four days a week of life she was allowed.
I responded with optimistic words, but I very much understood her frustrations. She wasn't just miserable and barely present those three days a week; dialysis left her so exhausted that she needed to sleep late the following day, leaving her with short days even on days without dialysis. You'd have to be an especially empty-headed Mary Poppins to live that life and not think at least once in a while about ending it.
After almost a year of asking to be switched to home dialysis, when the change was finally approved it was like manna from Heaven, and we were both very happy. Home dialysis was awful too, and it left her exhausted, and she described it as "a new and improved form of Hell," but it was an improvement. She felt like she had seven days a week instead of four. And one afternoon, shortly after she had started home dialysis, we were driving along West Washington Avenue, and we had a brief conversation that I'll never forget.
"Remember," she said, "when I said I was thinking about giving up?"
"I remember."
"Well, I want you to know, just in case the home dialysis doesn't work out, that I've decided to stay. Even if staying means going back on hemo and going to that awful clinic and having my life reduced to four days a week, I'd want to stay. Because of you, I'd want to stay."
I had to pull the car over to the side of the road, because my eyes were too watery to see. "Steph," I said, "that's terrific to hear, and it's a big relief." Then a long pause, while I gathered the words I wanted to say. "It's also the sweetest thing anyone's ever said to me."
She kissed me in the car, illegally stopped in a bus zone beside Brittingham Park, where we then waited a few minutes for my vision to clear, before continuing home. In all the time we lived in Madison, we only went to that park once or twice. That afternoon, we didn't even get out of the car. Still, it's a memory and a conversation that replays in my mind every time I drive that stretch of West Wash, and often when I'm nowhere near that part of town.
So did Stephanie exit the world on purpose? Nope. Absolutely not. But she was so weary of the doctors and doctoring, she was willing to gamble a bit with her health, if it meant she wouldn't have to have yet another medical appointment. That's what she did on purpose, by choice. That's why she didn't make an appointment, when she was feeling poorly and not eating well last summer — a few weeks before she died.
There are days when I can't shake my regret, my unending regret, that I didn't demand that she see a doctor. I suggested it, several times, but as always, we agreed that it was her decision, and she wanted to wait and see if she'd feel better. She waited too long, and she didn't see a doctor about it, until I found her crumpled beside the bed and called an ambulance, when I came home from work one afternoon.
I'm always going to regret not demanding that she see a doctor, but I can also hear what Stephanie said so many times. "It's my body, my health, my choice. If you nag me too much to make a doctor's appointment, I'll dig in my heels and never make an appointment."
If I could go back in time and warn her when she started feeling poorly, "This time it will literally kill you," I'm certain she would've made an appointment pronto. But without the fantasy of time travel, all I said was, "You ought to see a doctor," and "I wish you'd see a doctor," and "It would be a good idea to see a doctor." I suppose the most powerful way I could've phrased it was, "It might kill you," but I know what she would've said to that. "If it kills me it kills me. I'll take that chance, because if it's not my choice then I might as well be dead anyway."
In not seeing a doctor, she was taking a chance, and she knew it. We were both too stupid to understand that the stakes were life and death, not just sickness and hospitalization, but Stephanie knew she was taking a chance. And I knew that she knew. So there's no-one to blame but me and her.
But I also know that she wasn't choosing to die. She was only choosing not to see a doctor, not yet. And that's not just a rationalization, to make me feel better. Know how I know it's not? Because it doesn't make me feel better. Not even a fraction of an iota.

The housing bubble


Stephanie and I talked about buying a house, or if we couldn't afford a full-fledged house, perhaps a condominium. The conversation lasted a few months, while we were fairly new to Madison.
She would sometimes show me on-line real estate listings, and we would virtually walk through a house. We also strolled Madison neighborhoods for real, took notes about homes with "For Sale" signs in the front yard, and went to open houses at a few condos near Tenney Park. We looked at some very nice places we couldn't have possibly afforded, and some lesser places where we might have been able to sign a mortgage and move in. Steph was in low-level management in the Mortgage Department at a bank, and they offered an "employee discount" that might have made such a purchase more feasible.
She scrutinized our finances (math was always her bailiwick) and decided that we could do it — barely, and only if we could lowball a very motivated seller, and only if we scrimped on everything else in our lives. Even if we could find a place at an unlikely low price, though, and even if we cut back on every other expense, no safety margin remained. If either of us lost our jobs, or if either of us were sick or injured and couldn’t work for even a month, then the bottom line would be red instead of black.
So, after we'd gotten our hopes up, Stephanie sighed one night at the dinner table, and suggested that we let home ownership fade away. "Instead," she said, "we should continue living within our means in our boring but cheap apartment where the landlord pays the heat, and fixes the oven when it breaks, and replaces the fridge when it dies. We're better off with a rented roof over our heads, than buying a house and adding so many new worries."
I didn’t argue because she was right, and the purpose of telling this story is to give Stephanie a posthumous pat on the back. Her decision saved our hides. A year and a half after our brief flirtation with buying a house, it was 2008, when the so-called housing bubble burst. Several million Americans faced foreclosure, and we would’ve been two of them. If by some miracle we'd made it through the 2008 crash, we would’ve lost our home or condo a few years after that, when Stephanie’s health issues began, and she started missing work due to sickness and doctor's appointments.
There's an American law that's supposed to protect people in such situations, called the Family and Medical Leave Act (FMLA). And FMLA deserves credit for good intentions, but realistically, that law only protects workers who are moderately sick, not seriously ill. Once you're ill enough to have missed twelve weeks of work in a year (which Steph did, in 2015) that's when FMLA runs out. After that it was legal to fire her, and she was promptly fired.
Without health coverage through her job, we had to pay for Steph's medical insurance, which was expensive indeed. Of course, Obamacare saved her life; if the same thing had happened a few years earlier, when it was legal for insurance companies to refuse coverage to people with "pre-existing conditions," it would have been impossible for Stephanie to obtain health insurance at all. But her coverage cost more than the rent, and we struggled financially. 
She received disability pay from Social Security, but it was a fraction of what she'd earned while working. My income also decreased — I'm paid by the hour but missed many shifts to take Steph to medical appointments, and to be at her side when occasional complications required her to be hospitalized. All of this ate into our rainy-day fund, which was never much anyway. Sometimes, it was difficult to pay the rent on our cheap apartment.
Near the top of the list of "Best Decisions Ever Made," then, is Stephanie's decision to cancel our daydreams of home ownership. If we had bought a house, we would've lost it and been out on the street. Or, best case scenario, we would’ve moved to Racine to live with her parents. Steph loved her parents, of course, but she would've hated living with them for the last years of her life. I would've hated it, too, and her parents would've hated having us there. To be clear, they absolutely would've done it, would've welcomed us without complaining, because they're her parents and they were always supportive. But it would've cramped everyone, all four of us plus the cat. Nobody would've been happy.
Instead, because we didn't buy a house, Stephanie was able to spend the rest of her life in our apartment. It ain't Buckingham Palace, but it was home. She couldn't get up and down the stairs without me setting up the wheelchair ramp every time, but that would've been true at her parents' house as well. In our own apartment, Steph was as independent as it's possible for her to have been. She could do as she pleased, stay in the city and neighborhood she liked, and when she wasn't hooked up to dialysis, there was no place and nothing she couldn't do if she wanted. We did a lot of things, had a lot of fun those last few years, all because Stephanie decided, correctly, that we couldn't afford a house.
In other words, that smart lady sure was smart.