Need to put a face on the government Shutdown? Will it help you understand how it affects others? What about the kiddos who rely on Head Start? How about the house-bound elderly and disabled who utilize Meals on Wheels? Not close enough to home? Well, if it helps, I’ll share my dad’s and my story. I presume that most of us have met before if we’re all here on Facebook a-scrollin’ together. Here’s one handsome face you can put on the crisis if it helps to better understand who is being affected. This is a photo of me with my dad, R.L.P. - may he RIP. He had two experimental treatments at the National Institutes of Health on days that the government wasn’t shut down, during his battle against blood disease. His first treatment at the NIH is certainly what saved his life and gave us 15 more years together. If he had been turned away like the patients who are being turned away from federally funded research hospitals today, he would not have made it far. Here’s an article from the Atlantic that tells of patients being turned away during the shutdown: http://www.theatlantic.com/business/archive/2013/10/the-saddest-paragraph-youll-read-about-the-government-shutdown-today/280174/
My Dad’s first lifesaving treatment was in an animal wing of the NIH. Because his bone marrow refused to work properly, he took part in a unique clinical trial that his doctors thought might shock his body into creating blood. So he travelled from Florida where he lived at the time, to Bethesda, Maryland where he was installed as a patient next to an antiseptic animal stall. First, a portion of his blood went into a horse. The horse’s blood created a serum. The serum was then cycled into my dad like a barn yard sci-fi movie, and it worked like a car battery jump. His marrow began making blood. It was dangerous. Only 4 of 10 patients in his study survived on the government’s dime. I recall that the horse survived but it could be wishful remembering. Always hilarious, Dad was proud he got the horse instead of the rabbit - an ego boost to his ‘manhood’. Because the government was open on those days, R.L.P. got more than a horse-sized ego boost. It’s not dramatic to say that he got to live instead of die. And again, because the government was open that day, a new leukemia medicine was created, in part, thanks to his participation. So, now others get to live instead of die.
More than a decade later, after years of fairly good health and irregular blood transfusions, he became very sick again. Relying on blood transfusions was taking its toll, so when a new trial came down the federal pike, his doctors thought it would be helpful to have him take part in the study. His was a very difficult to diagnose and treat blood disease commonly referred to as Myelodysplastic Syndrome (MDS). Although the new medicinal trial was a risk to his heart and overall health, he travelled back to Bethesda, this time from Pennsylvania. I lived in Baltimore then, and could visit often. My brave poppa had that newly created medicine, Campath, injected directly into his heart during a terrible 28 day in-patient trial. But, the government was open then, and his heart was big and strong, and he had faith enough to survive. Now Campath is used regularly as a two-part drug combo that treats hard-to-fight leukemias and common blood cancers. So, hey, thanks for being open and funded that month, government.
Until one witnesses this kind of ordeal, it is difficult to imagine the step by step process that dovetails into the real difficult decisions that can possibly end with a loss of life. For an example of this, climb on this here train of thought, wontcha? Start by imagining the time these patients must take out of their daily routines. To board a plane and fly away from their home for weeks at a time, then stay in a hospital or a hotel with shuttles to daily appointments is too exhausting and prohibitive for many. So, some patients don’t even get there. If one doesn’t receive help from family members, a church family, or neighbors to give them car rides (for multiple visits to hospitals hundreds of miles away), some patients drive themselves. So then one arrives, alone, to undergo difficult physical and psychologically damaging experiments. On days the government isn’t shut down, they are admitted. Now becoming the newest guinea pig in a wheel of studies that may save their lives or/and help save others. All the while, these folks don’t know what shape they’ll be in when they get back to their own zip code, or if they’ll even get back. The caretakers, if any, wait nervously. They are all hopeful and afraid and nearly out of gas… emotional and physical. Believe me.
There are so many hundreds of people wringing their hands in Bethesda right now. Sick as they are, patients and caretakers are worrying themselves sicker. My heart aches for those turned away today. This ain’t some political game between two parties either, brother. This shutdown is the Meta version of the kid who lost the monopoly game tossing the board across the room with no concern for the others who get hurt by their hysteria. The shutdown is happening because of childish apathy. It’s also the opposite of Christian - if that’s your angle. And IMHO, any media outlet that positions itself neutral instead of acknowledging the outlandish behavior of the most extreme wing of the Republican Party is outing its own lack of credibility. I hope this story helps put a face to the dangerous game the Tea Party led Republicans are playing. I hope this personal story will help you to remember the importance of federal funding for the greater good the next time some self-identifying Libertarian embarrasses themselves, or some otherwise conservative wants you to understand why the Feds shouldn’t fund this program or that program - blehh. I share this personal history from my life because the Personal is the Political, if you hadn’t noticed. And the government, led by the people for the…eh, you know, well it just doesn’t happen to be open today. Good on ya and good for the rest of us if you happen to remember our faces the next time you head out to the ballot box. -swarper