I was going to write a whiny column about how sick I’ve been all winter and how unfair, in general, life has been to me recently. Then I read Julia O’Malley’s story about the 18 year old with Cystic Fibrosis. I wish I could say that made everything fall into perspective and put my little illnesses in their proper place. But I’m really not that noble. I still feel sorry for myself. I just feel worse for the young lady with CF.
Back in prehistory when I attempted the amazing profession of nursing, I worked on a pediatric unit in a large Brooklyn hospital. We had a special section filled with kids with chronic illnesses such as hemophilia and CF. Most had been admitted to the hospital more often by the time they were five than you and I are in a lifetime.
I went to a lot of funerals for those kids. The nurses would take turns when we lost one of our “chronics” and make sure at least one of us was at the service representing the nursing staff. In some cases, more than one nurse was present, even if it wasn’t her turn to go. You went because this was a kid that slipped past that barrier you had to erect in order to show up for work every day. And you knew you couldn’t live with yourself if you weren’t there to say goodbye.
You can’t sit up with a child who is coughing and choking and fighting to breathe day after day, night after night, without a bond forming; without finding yourself trying to inhale with each of his inhales; without finding yourself fighting to blow air out of your lungs as though somehow that power will transfer to the young child in front of you and give him the strength to blow out too.
While we have yet to cure diseases like CF and hemophilia, science has made enough strides to allow these children to live longer and more productive lives that they ever could back when I was a nurse. This means that their families, the medical profession, the health care system, and society as a whole, is faced with extraordinary costs to give them the best chance possible for a good life.
You just have to look into the eyes of one of these kids fighting so hard for something most of us take for granted to know that whatever the cost is, it is worth it.
Since no mention was made of medical costs in O’Malley’s article, I have to assume that the family had insurance and a way to pay for the expensive treatments and repeated hospital stays. I can’t imagine what it would be like to be the parent of a young person with a chronic illness and no health care coverage. How do you watch you child suffer while trying to decide if they are sick enough to incur a medical bill or whether they’ll somehow be OK so you can use the money to pay the rent?
I am infamous for waiting until I am dragging around on my tongue before I’ll admit I need to go see doc-in-a-box. But I’m not waiting because I’m trying to choose between health care and groceries. I’m just being stubborn in refusing to accept I’ve reached that stage in life where I can’t shake things off like I used to in my misspent youth.
There are far too many families in our state and country for whom that horrible choice between living necessities and health care is one they face on a regular basis. That is simply wrong. Putting people in a position where they have that Sophie’s choice hanging over their heads is putting people in the kind of untenable situation from which no good can emerge. How does a parent choose between feeding one child or getting medical care for another.
I don’t know about you, but for me it seems wrong that in a country as grand and glorious as America is, there might be families suffering because they can’t afford the medical care needed to keep themselves whole, healthy, productive members of society. Surely the American dream is big enough to include everyone, even those needing a helping hand to reach it. Isn’t it?