Brooke died when she was 23. That was roughly 20 years longer than the doctors predicted she would live when she was born.
I was in my late 20s when I met her. I worked with her mother.
Brooke asked me once why I didn”t want to be her friend. “Do you really want to know?” I asked her. She said she did and I told her I didn”t want to like her because I knew she was going to die.
She answered me with, “Everyone”s going to die, and anyway that”s too bad, it”s too late because you like me already.” She was right. She had a spectacular personality. She didn”t waste a moment of her short life.
Brooke had cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. A few months before she died, I frantically carried all 87 pounds of her in to the emergency room across both arms, as if I were carrying an infant. She couldn”t breathe. Everyone in the hospital knew her. The entrance to the emergency room was like a revolving door in Brooke”s world.
I think about her from time to time, mostly in the summer. The last time I saw her outside of intensive care, she came by to show me some photos. She was wearing new sandals. “I love those,” I said. “Good, I”m going to leave them to you,” she told me. I pretended I didn”t hear that.
But every summer since Brooke”s death, I”ve worn those tattered Doc Marten sandals and remember what a gift it was to know her.
On Saturday, I was reminded of Brooke when Congressman Mike Thompson was giving a speech about the health care law. He talked about a family that had two children with cystic fibrosis. I cannot imagine the strength this family has to muster to rage against the current machine that is our health care system.
Brooke”s mother worked all the time and that was when insurance was better. She still had to move back to her childhood home. With assistance from her family and friends they barely got by. Brooke”s mother worked about 90 hours a week to provide for her chronically and terminally ill daughter. That was when most employers provided some sort of coverage to all full-time employees. That system has deteriorated nearly to nothing. Too many people have to gamble they won”t get sick in order to keep a roof over their heads.
Now many people are living without a net ? no insurance.
I still don”t know all that I need to about the reform of health care. But I do know this much, something has to change.
The way things are now, that”s a broken system. Hard working people, responsible people are suffering and sometimes dying. They are helplessly watching their loved ones perish.
Aside from preventive and necessary medical care, the cost of needed prescriptions is outrageous and unaffordable. People in peril, dealing with life-threatening illnesses are often cut-off from having any coverage and left without resources. Taking medical coverage from an ill person is similar to ripping a sandwich out of the hands of a starving person.
Medical care should not be a luxury. It should not bankrupt and leave people destitute and homeless.
This is not about politics or partisanship, it”s about people.
I am glad my congressman is talking about real people, real situations and recognizing the difference between human beings and statistics.
Regardless of how you feel about the new health care law, it is imperative that we all care about the health of our society as a whole. It seems that some of the monumental inequities in health care are being addressed and that”s a start.
We cannot continue to ignore our neighbors and allow them to suffer.
Mandy Feder is the Record-Bee news editor. She can be reached at mandyfeder@yahoo.com or 263-5636 Ext. 32.
