Friday, June 15, 2012
Don’t Cry for Me Argentina!
On July 26, 1952, Eva Peron succumbed to cancer after a long battle of surgeries and experimental chemotherapies. She was only 33 years old, but had become a political icon and champion of the underprivileged. After her death, the country of Argentina came to a standstill, and so powerful was the imagery and vision she had brought to her people, that for almost 20 years the military dictatorship (that had arisen in the vacuum she left at her death) banned any private pictures be kept by any any Argentine citizen, and her body was shipped to Milan, Italy so as not to be a rallying point for the impoverished masses.
Andrew Lloyd Webber and Tim Rice reintroduced the pop culture star status to the young champion of her country in the musical Evita. 60 years later a 13 year old is about to succumb to cancer, and we know that his passing will bring tears, and sorrow and heartache that will appear unfixable. But this is where we turn to what both Eva and Evan desire. Don’t Cry. Know that you are loved just as we know you love us. Life is a series of dichotomous choices: Love – Hate, Anger – Remorse, Happiness – Sadness, and of course Life –Death. Not often considered are the opposites of Fear – Faith, Hope-Despair, and Joy –Depression.
Our approach to Evan’s life has been to seize hold of the former and leave the latter to later. As we look at this summer there is definitely a nervous anticipation of a homeowner approaching the terminal payment of a balloon note. But we cannot know the timing of final breaths anymore than we could have predicted that you would be reading this note. But we know when the first tears were shed, and we know when the first laughs were heard; what we ask of you is that you try not to hold onto the tears, but revel in the smiles and the laughter of life. You will never know when they will end so long as you seek to live your life to the fullest.
We have heard the questions asking about Evan and how he is handling this situation. We have heard the questions about how we are handling this situation. But now we must ask you how you are handling this situation? When you see us, do you avoid eye contact or is eye contact tinged with pity? Are we worthy of a smile and memories of joy, or will you merely see an inevitable end of life as a tear rolls down your cheek?
In the past 2 weeks we have felt that the hospice model we have been dealing with is a cross between the Key Stone Cops and the inevitable run around of a 3rd Party Warranty. It has been a tragicomedy of Shakespearean proportions. As of this afternoon, we will have seen 8 people in 7 different visits of no less than 2 hours each. Our two highest priorities have been to ensure blood draws at home so that energy for out of home activities can be reserved for more fun things than a 3 hour commute to UNC; and to ensure that there is a counselor available for Evan’s 87 yr old Grandfather, Rev. Pat, who has lived with us for almost a decade.
It seems amazing that so far we have answered the same questions on the same distressing subjects so many times that it seems there is just a fundamental attempt to desensitize us to the impending death of our son by repetition of the obvious. Best question every single time, “So how are you dealing with this?” It appears as if there is no communication between staff, no universal information update, or that the little computers they carry around have no way of sharing information with each other. This is before we get to the question of whether they have actually read up on what Evan/we have been dealing with for 4+ years. I suppose the ongoing referral to read this blog is too much to fathom.
Morgan, our amazingly gifted and insightful daughter, has pointed out that the cool, calm and composed parents are not what anyone outside our family expects to find. Those people who have to visit us for professional purposes are often so distressed with our impending loss they are rendered discombobulated, at sixes and sevens. So much so that our last visitor fell back on classic religious platitudes, and as a result she was almost shown the door. She was saved by the return of a mischievous beagle who so rattled her cage that she left of her own account. (18 hours earlier, Snoopy had jumped our perimeter fence and chased after a deer. He is 13, the fence is 4 ft high. It was a phenomenal event only topped by his mournful baying at the stranger saying, “God only gives you what you can handle”. We are guessing that the new pair of underwear needed by our latest visitor indicated that God may have exceeded her capacity at that moment.)
Note Bene: Every person who comes to see us/Evan has only the best of intentions for all of us. Evan is not in any pain beyond what he has tolerated day in and day out for the past 4 years. And the provision of human foils and foibles for the verbal rantings of the writer is truly a gift from God and provide ample evidence that life must be lived in the moment; and not with bated breath for the inevitable but unknowable cataclysms that litter life like a mine field.
Next point of aggravation/humor: The impending need for oxygen therapy. Many people who enter hospice, that is the period of time in which they know they will die, require some level of supplemental oxygen so as to best function. Many people would include the aged or adult infirm; Many people would not include vibrant teenagers who desire to live life to its fullest in a mad thumb your nose at the devil sort of way. So when a trend of declining Oxygen saturation was noted, a simple inquiry into the simplicity of establishing oxygen therapy was met with a standing order for oxygen for hospice patients. Great, wonderful, no hassle, just like that it would arrive the next day.
Fast forward – Lively active teenager (Cancer patient or not, given enough anti-depressants, McDonald’s Chicken Nuggets, and Dr. Pepper you’d be lively too) needs to get out of the house, has trips to Dallas and Bethesda planned, with a week at Victory Junction Cancer Camp (Play Nascar, boating, fishing, archery, horseback riding, etc – No one talks cancer – Camp is fully Medical staffed) And certain questions come up. How do you take Oxygen to Dallas? How will Evan get around camp? Will there be enough oxygen for a car ride to Bethesda?
So the oxygen arrives in the form of an oxygen concentrator. The small unit weighs 35 lbs, plugs into the house electric, and is about as portable as an anvil. It is the ultimate in house arrest gear for the dying. Yes sir, you can live on all the oxygen we can get you within 50 feet of this little ball and chain, but that is the extent of the fullness and quality of the life you have left remaining. So we find out about a portable battery operated 3lb unit that will go anywhere including airplanes. But the oxygen company is not allowed to deliver those units to hospice patients – too expensive, doesn’t fit the patient model, etc. Yeah there’s gonna be a battle. But you can already guess who is gonna win that one.
And now we arrive at the ultimate irony of the last 7 days. When we first came to North Carolina we sought out a gerontologist for Rev. Pat so that as he aged he would have the benefit of knowing his doctor as he approached the end of his life. And he found an amazing doctor who he will sit and chat with about the most fascinating subjects. And you’ll never guess who the medical director is for Evan’s hospice provider?
The answer was here all the time
I love you and hope you love me
Don't cry for me Argentina
Don't cry for me Argentina
The truth is I never left you
All through my wild days
My mad existence
I kept my promise
Don't keep your distance
Have I said too much?
There's nothing more I can think of to say to you
But all you have to do is look at me to know that
Every word is true!
Do not cry for us, do not cry for Evan, do not cry for yourself. Cry for love, cry for happiness, cry for joy. But above all else Live your life today and share the joy of the love in your heart with all who you meet today.
PS. Regarding the humorous paragraphs above taken at the expense of a number of hospice workers. It is only fair to publish the retractions and errors. It is essential to remain humble and the writer put pen to paper too quickly, but for the sake of literary license and continuity they remained in the body, but will hereby be remedied. First, the chaplain who came today to speak with Rev. Pat was ex-Army and was the model of both efficiency and compassion as he not only took the time but also the interest and initiative in the need for a portable oxygen concentrator. Second, the ‘Dog’ lady went back to the office and took up Evan’s cause to maintain his independence and mobility arguing for portable oxygen.
That would normally end the situation, but it turns out they sent portable tanks that cannot be taken on airplanes. Unfortunately, the column inch maximum has been reached otherwise the proposed alternatives would cause you to weep from the length, the frustration, the humor and the sadness of the resulting conversations. Perhaps next time.