Columns, Opinion By Patricia Fontana, Guest columnist
Another school shooting frays our communal nerves. While tragedies involving violence grab the public’s attention, there is a quieter story that plays out in homes across the nation. Frequently, and out of public view, families watch as loved ones deteriorate before their eyes, spiraling deeper into delusion and dysfunction. As they lurch from crisis to crisis, family and friends are helpless to intervene; frustrated by a system that gives them few options.
It doesn’t have to be this way. There is a bill working its way through the Congress right now that tackles some of the major problems of our current system. HR2646 is the brainchild of U.S. Rep. Tim Murphy. Spurred by his own professional experience as a mental health professional, he has listened to families and experts, gathered bipartisan support, and come up with a set of measures that address the most pressing disparities and deficits in our current public health system, if only politics doesn’t get in the way. Why should those suffering from disorders of the brain receive a different standard of care than those whose illness affects any other organ in the body?
I have an adult child who was struck by severe mental illness at 19, on the cusp of a full and successful life. At the same time a niece was diagnosed with a severe physical illness in her teens. My son was diagnosed with a neurobiological illness, bipolar disorder; my niece had lymphoma. Our families experiences could not have been more different. My niece got the finest medical care available for as long as it was needed. I was told “your son is not sick enough yet, you have to wait until he hits bottom.” Can you imagine telling the parents of someone with cancer “you have to wait until the cancer is stage 5 before we can intervene?”
When he got ‘bad enough,’ and we were able to have him hospitalized, he was usually held for 24 or 72 hours, then released, because he was ‘presenting well’ after being dosed with powerful medications. as if he were being treated for the flu, rather than a serious chronic illness. Would a cancer patient be given one dose of chemotherapy, and told she appears better now, or her insurance company only authorized one day of treatment, or there just is not enough chemotherapy to go around for her to receive more than one day’s worth? If her medical condition became so severe that she could no longer think clearly or lapsed into a coma, would treatment be withheld because she was not able to tell doctors that she was choosing to be treated? Instead of trained medical professionals would it be recommended that her treatment and medications be directed solely by cancer survivors, because they had ‘lived experience’ of cancer? If an emergency arose and her parents had to call an ambulance to take her to the hospital, would the doctors and staff at the hospital refuse to tell her parents if she had arrived, whether she was being held; would the doctor refuse to discuss her treatment or history with them? Would they shoot her up with powerful drugs then release her hours later, suffering with side effects, onto the street with a bus pass, failing to notify her family who would have picked her up? We have experienced all this and more.
Both my son and my niece were extraordinarily intelligent and creative individuals. My niece was cured of her illness, finished her education at top universities, and is now an oncologist, happily married with a newborn. My son became so ill because treatment was denied that he had to drop out junior year of the top university he was attending, and now sleeps on the heating grates outside of the buildings where he once attended classes.
