If and When

I am a visual person who is prone to gazing off into the future with, on occasion, almost prophetic clarity, surprising myself when the vision comes to pass. Oh, I am not talking now of the time I bought a wreck of a condo that no one else would touch with a ten foot pole. (I saw a haven and turned it into a comfortable home for me and Anthony on a single mom’s budget and a lot of free help from friends who thought I had lost my mind but were too loving to say so out loud.)  Or the time I gazed down into the crib at my son and just knew that one day this one was going to somehow make a difference in the world; what exactly that difference would be I could not pinpoint at the time, but I knew just the same. Now I know.

No, I am talking about the vision that appeared in front of my spiritual “third eye” as I gazed down at the hospital bill for Anthony’s eight day battle with that monstrous infection last month, the one that came close enough to claim his life if not for Divine intervention.  Amount charged – $30,000.00. Allowed billable – $16,190.69. Co-pay – $1,619.07. And there will be more bills like this because we are newly diagnosed with a chronic illness, a lifetime of medical expenses. This one alone wipes out my meager savings so it’s a good thing I work multiple jobs.

The vision . . . me sitting at a long table in front of a Senate subcommittee on health care reform, facing down a panel of well meaning senators seated in their privileged class cluelessness high above a cluster of frenetic photographers who are crouched below them, low to the floor, nervous, ready to pounce on the next ten o’clock news sound bite. The moment, tense; it is as if a knife is suddenly thrust deep into the heart of the elephant in the room as the opening line is lobbed my way and lands on my ear; “Ms. Greco. Please tell us your story.”  Haltingly, in a daze of unbelief at the situation I find myself in, I begin as only a parent of limited means with a chronically ill child can; I name my greatest fear.

If and when my vision comes to pass; if and when someone in a position of power really, genuinely, cares enough to hear what I have to say I will tell them this on behalf of the countless other parents like me–

“Senators, do you know what it’s like to hear the ticking of a bomb that you know will explode all over you and your child and you feel helpless because you do not know how to stop it from happening? Do you know what it’s like to hold your critically sick, sobbing child and know that your resources to help are limited? Do you know what it’s like, Senators, to watch a greedy gaggle of pharmaceutical and health insurance lobbyists create a mindset that only some in this country, the United States of America, are eligible for health insurance –obscenely expensive health insurance at that? Excuse me for buying into that line that we are all “under God” around here and that the life of every American matters, all lives because, quite frankly, I don’t believe you for a minute. Your actions just don’t match your words.

Since the day I was able to put my 24 year old adult child back on my insurance, I have given thanks every day for President Obama’s gift to us, the Affordable Health Care Act. Because of this visionary president, my son, along with 2.5 million young adults age 19-25 now receive medical insurance. (Retrieved from http://www.bloomberg.com. Bloomberg. December 14, 2011) Esteemed Senators, I am stunned as I further study this amazing, astoundingly comprehensive, well written act (yes, I have read all 974 pages) and the Bloomberg reports on it, that this president’s administration struggles to “convince Americans that the overhaul will be beneficial.” I struggle because you see, that’s where all of you come in. It is your job to take the message of “benefits” to the people. It is your job to say this is not about an “overhaul,” it is about doing what is right for every single one of our citizens, especially the least of these, the most vulnerable.  It’s your job to tell everyone that the “benefit” of keeping this Act in tact is that everyone, every life is valued in this country –  that is what you say when the cameras are rolling – that every citizen matters. Do you mean it when the cameras are not rolling? Prove it.

Panel of Senators, you will fight like maniacs for the life of an unborn child, yet you dare to hesitate to make affordable insurance available to the mother, dare to stand in the way of making this a reality by threatening to kill the Act if your party is successful at the polls. Heck. You won’t even give her birth control to help prevent an unwanted pregnancy. Nope.  The poor, marginalized women of this country, women who live in a different world than you do are not real to you. They have no names, no faces. They are just data on a spreadsheet to you so it is easy to discount them by imposing your paradigm of them on them instead of trying to understand their plight. May I ask how many unwanted children have you adopted lately?

Please. Please help me understand your thought process regarding your animosity toward this Act because I really want to know. I want to know so the next time I am behind a senior citizen at the CVS and I have to hear them ask the pharmacist to only give them 7 pills of their monthly prescription because they can’t afford all their pills and plus keep the heat on or buy food, I’ll know what to say, or do because I can no longer afford myself to step around them to the counter and add some money to theirs.

You see, Senators, my son has been recently diagnosed with a chronic illness and his time on my insurance runs out this December and I need to save every penny for his future medical needs. You want to know why I’m panicked about this? I asked my human resource department how much I would have to pay to keep my son on COBRA when January 1 rolled around and they told me anywhere from $700-1,000.00 a month! And you know what, Esteemed Senators? I’m not really sure, since you have really good insurance, some of the best I’m told –I’m not really sure that you are aware that if my son goes uninsured for 90 days he’s basically uninsurable due to his now “pre-existing condition.”  That is, unless you get behind this health care act and make insurance for him and others like him permanent in this country of great abundance, amber waves of grain and purple mountains majesty. If you can’t, then I demand that you to look him in the face, address him by his name, Anthony, and I want you to explain your logic to him as the quality of his health care declines once he is no longer age-eligible for this Affordable Health Care Act as it stands.  I want you to help ease the guilt he has taken on as he watches his mother struggle even harder to come up with an extra grand a month for the COBRA which will eventually run out.  Oh, and did I mention the co-pays and medical supplies on top of that extra grand a month? And did I mention that when all that runs out, if he can’t find a job that can insure him we are sitting ducks? And what about those who have no job, no insurance to piggy-back on to, no one to help them pay for their medical care or no access to even a community health care clinic? What are they supposed to do?

Senators, I will close with this; I am so disgusted, disillusioned and disappointed in you all for not caring enough to place America’s health over the profits of pharmaceutical and health care organizations or- dare I say it – your own political or business interests and take a stand and do what is morally right and just. I am angry that you would dare to argue with the President about such matters because to argue with him is to also look me in the face and argue with me, the parent of a chronically ill child. To argue with the President is akin to looking into my son’s eyes and telling him he isn’t worth protecting. I am infuriated that you would allow people to do without medications or languish in pain and many to die because you are “up there” and we are “down here” and you, for some inexplicable reason, just don’t get it. Please. Please explain it to me.”

If and when my vision comes to pass; if and when someone in a position of power really, genuinely, cares enough to hear what I have to say I will tell them this on behalf of the countless other parents like me.

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Riding Shotgun

This past week, Anthony and I traveled south on US 31 to see his new specialist in Indianapolis. The drive is a three hour, straight shot down an asphalt artery of our state to the heart of the Indiana University Health system which, according to U.S. News and World Reports, is touted as one of the best in the country.  My trusty Camry rolled along with a quiet and apprehensive Anthony at my side, Picc line peeking out of his shirtsleeve. I felt blessed knowing my precious cargo would soon be in the gifted hands of one of the best Crohn’s doctors available to anyone. We chatted some, mostly about what we already knew or what Trudy and Jeremy told us to expect; we commented as the buildings along the way became taller, more impressive, their expansive glass facades glistening in the sun – lighting the way. What we didn’t talk about were the “What if’s . . .” It was as if not speaking our fears made them invisible and impotent. We had no words to express the thoughts and fears skulking like ambient noise in our souls.

As we sped along to Anthony’s future, Spirit spoke to me – “Lisa, it is time to learn to ride shotgun for Anthony.”  In that biblical “twinkling”, that nanosecond of life, I knew what I was being told. My heart flashed back in time as my breathing momentarily ceased, like a sleep apnea of the heart. Memories raising Anthony careened through my mind and screeched to a halt in the living room of our tiny green house where Anthony learned to walk. There we were, early 1988, Anthony dressed in shorts and a Cookie Monster t-shirt. He was giving clear signals that he was done cruising the furniture and was ready to head out to new territory. His dad even snapped a picture of that precise moment – me hovering above as Anthony, with a smile that still melts hearts, raises chubby hands to grasp my fingers – a quintessential Kodak moment frozen in time. Anthony stuck his little right foot straight out as if stepping into the Hokey Pokey of life and brought it down with a thud, then the left, then the right, left, right. With each step I held my breath as Anthony teetered forward, letting go of my fingers one by one until he gleefully landed in his father’s outstretched arms on the other side of the room.

In that moment of remembering, I knew we were not just headed to an appointment on U.S. 31. We were headed for an appointment with Anthony’s future – a future that would one day not include me as his advocate and protector. One day I would be gone. How could I teach him to take charge of his health, his healing, and his life when every fiber of my role as his parent wanted to wave a magic wand and make it all go away – or at the very least, take the illness for him? It just didn’t seem fair. (Are you listening, God?)

Remember the scenes in those old black and white cowboy movies where the stagecoach bearing passengers and some sort of valuable cargo is leisurely rolling along a serene, yet rocky, countryside?  The driver confidently perched atop is holding the reins on a team of sturdy horses – next to him, the shotgun guy with trusty Winchester rifle tucked at his side, ready to defend and protect the driver, passengers and cargo at any cost. His job is to keep a vigilant eye on the horizon, to read the shadows, to look up, look down and all around for the enemy and to alert the driver if one should appear. It is not a job for the faint of heart.

Of course the stagecoach is attacked and as the driver whips the team of horses to frightening speeds, the coach pitches violently side to side trying to escape; a wheel falls off, the passengers scream. As much as he wants to, Shotgun Guy cannot reach over and grab the reigns and help drive the coach – that is not his job – how would he shoot? And because he is committed to protecting the driver, all he can do is shoot to kill anyone or anything that dares imperil the driver. Shotgun Guy is not deterred.  Despite the rolling, pitching and breakneck speed, he fires off round after round at the foes allowing the driver to do what he needs to do – drive the stagecoach to safety. Interestingly, Shotgun Guy is usually picked off before the stage reaches its destination. Like I said, it is not a job for the faint of heart.

This illness is Anthony’s stagecoach to drive; it is his life. He has to learn on his own how and when to snap the reigns to change the direction and speed of the horses so that he arrives safely at his destination. As much as I want to grab the reins I cannot. My job is to scan the horizon, read the shadows, look up, look down, look all around and shoot to kill anything that might threaten his safe arrival. I can teach him his rights as a patient, teach him how to ask questions, to say no and to self manage his care. I can teach him to surround and sustain himself with the energy and love of those true to him.This is all I can do.

As Anthony metaphorically begins to step out, letting go of my fingers one by one so that he can grab the reins, I listen to Spirit and take up my position – riding shotgun.