A System From Hell
We got the call in 2001. She was pursuing her lifelong love of horses as a trainer in upstate New York. One day in May her horse got spooked, reared up and fell over backward on top of her, crushing three of her vertebrae and paralyzing her for life.
The weeks and months that followed included multiple surgeries, a long hospitalization and extensive rehab. The bills were exorbitant, to say nothing of the fact that our daughter probably would never again be able to support herself through full-time work.
When the bills came in, it never occurred to me that walking away from them was an option. I cashed in the IRA on which we were depending for retirement and paid them myself.
My husband's diagnosis followed just as our daughter was beginning to stabilize. Eventually I had to leave work to care for him, and our financial independence deteriorated on a parallel track with his health. The story is familiar: the medical crisis that becomes a financial one. Still, we were able to hold things together, moving from one crisis to the next but finding a way to get by.
That ended in October. We quickly learned that not even the most frugal planning is enough to cope with surging healthcare costs. The long-term-care insurance barely covers a fraction of his long-term care. I will care for him at home, but a time will come when even our home might be at risk: if he needs nursing home care, Medicaid will pay for it only after we have liquidated most of our assets. Consequently, a blessing--my husband could live like this for years to come--is also likely to bankrupt us.
I do not tell this story because it is unique. On the contrary, the point is precisely that countless people across the country are living it. And millions more are a crisis away from joining them--one lost job, a diagnosis, an accident. Most people do not have the luxury of being able to call, as I do, on powerful friends for help. Not even these friends, of course, can change the predicament my husband and I face. Nor will the situation change for anyone until political leaders get serious about comprehensive healthcare reform.
By "comprehensive," I mean that piecemeal approaches will not work--not economically, not morally. The healthcare crisis is not a series of isolated problems. The problem is not just the uninsured. It is not only the underinsured. It is not the young or the old. My husband had excellent health coverage; our daughter had none. He faces chronic illness in the twilight of life; she suffered a terrible injury just as her adult life was beginning. Between them, they span the complete spectrum of healthcare economics in America, but when crisis struck, they found themselves in the same place.
Our story also illustrates the unique challenges women face in the healthcare system, as in the economy at large. Women are paid less and given benefits less frequently--yet they are the ones on whom the responsibility of caretaking disproportionately falls. In addition, women disproportionately, but hardly exclusively, understand the perverse economic choices the healthcare system imposes. In my case, I had to quit working to care for my husband, only to arrive at a point at which he needs care I can afford only if I can find a job. The bills, meanwhile, are often inexplicable, sometimes contain mistakes and are always impossible to resolve without encountering a thicket of red tape.
Even on the other side of that thicket, the insurance companies cannot answer the most vexing question my husband and I--and so many others--ask: if "health insurance" does not pay for healthcare when people need it, then what exactly do those words mean? And all this says nothing about the fact that my husband had the foresight to purchase long-term-care coverage. The problem is that it nominally covers long-term care but does not cover its actual cost.
I am often told there is a shocking quality to our story--it prompts a realization that if this could happen to someone like me, it could happen to anyone. But of course there is little that ought to surprise us; political connections are bound to be of little avail in the face of a problem politics has refused to address.
If there is an upside to the country's healthcare crisis, it is that the problem is hurtling toward a point at which it absolutely cannot be ignored without immediate and disastrous consequences. If there is an upside for me, it is this: returning to those difficult days of poverty and fear in 1969 also means returning to a place where anger inspires activism. I was a young woman then, of course, with a lifetime of battles ahead. I am not so young now. But I have enough years left to have one more fight in me. Healthcare is it.