Quality of life in the American Medical System

Nothing medical has changed very much with Lydia since she was diagnosed as having seizures. There was a flurry of activity after her MRI; it was a blur of doctors’ visits, tests and appointments. The doctor’s indicated that the right way to do things was to find a cause and then a cure, so that’s what we believed would happen. The possible causes suggested only bleak prognosis. We felt so lost we would have thrown ourselves off the Vista Bridge if that were in their professional opinion. I secretly felt like we had done something wrong to damage her and now it was time for the grown-ups to take over and fix things. The doctors don’t and maybe can’t tell you that things might be okay and that she can still have a life. They are okay telling you all the things that are wrong and even that she might die with her first sniffle, and then they turn you loose in the world. So you leave the hospital and you’re driving with your hands like boards on the steering wheel and the world looks like a foreign place. You have this alien in the backseat that you can’t believe they trusted you to leave the hospital with. It is just like all new parents feel really, but this time it was our second-born, and yet really we were leaving with a third, unexpected creature that we had no ‘take-home’ binder of basic instructions for. Our second baby was gone…and that really bothered us I remember, not having a new binder of basic instructions.

After numerous visits to clinics and hospitals over the last six months, it seems like we’re near the end of what the medical professionals can do for Lydia. As I said, nothing medical has changed very much with her. She still has seizures. She still can’t hold her head or track an object. The appointments – that I hung on in the beginning – have thinned so that we’re left with big gaps of time where, I guess, daily life is supposed to fill in. The backing off of the doctors feels like another bait-and-switch: “We can’t fix the seizures, we can’t speed her development, she’s likely to die in her sleep, good luck.” Yet here she is, confoundingly content most of the time. Doesn’t she know how tenuous her situation is?! She just sits there blinking, nuzzling, breathing, eating, pooping and just being as she ever was. I feel like I’ve been on this long journey only to find myself back where I started and she’s been nonchalantly waiting here the whole time. Well okay, my suddenly-one-year-old girl, now what do I do with you?

Our medical system sucks. We Americans pretty much all agree on this. When Mark talks about the British system, but I can’t quite understand what he’s saying. It’s like he’s describing a color never seen before and I can’t quite imagine what he’s talking about. “What do you mean they care about your quality of life?” I ask, with a hint of annoyance, or maybe even air quotes and an eye roll if I’m really prickled. “Well they ask how you are doing, visit you at home and send help to keep you comfortable when you are seriously ill,” he says. By ‘they’ he means the doctors, which I guess also sort of means the British government. It is something I am incredulous about, suspicious of, and jealous for all at once. “Remember how volunteer nurses came every week to help my mom when she had cancer? And my dad? How the doctors came to their house? How they brought in a special bed and installed a chairlift when my mom couldn’t walk upstairs by herself anymore?” I do remember all this. I remember seeing her at her home, where she had raised five boys (five!) with her husband. At the end she was surrounded by her family, medical cords tucked discretely behind pillows by the nurses that would come by the house every day, she was in no pain. She looked and lived as close to normal as possible until the end. Seeing her so well cared for makes me think that to have anything less for someone you love is nearly unthinkable, especially in such an unthinkable, unbearable situation.

Mark says he feels abandoned with Lydia in the American medical system. Not, he admits, that the British system is without its serious flaws, but they are more willing to care for those that are beyond the help of pharmaceuticals. I feel the same but don’t understand how else it could be. It’s like a color I’ve never seen before.

So I guess it is up to us to figure out the tricks and tips and equipment that will comfort Lydia, give her a good quality of life (whatever that means). Although we are not the first to have a child with disabilities, there is no system out there to help and there is very little direction available. We are still missing our binder of basic instructions. But we are cobbling information together slowly from bits of information gleaned from the cerebral palsy support group, random websites and even people we meet paying for groceries. It is an added challenge to an already tremendous task. But what else could we do?