Mark was buried today. The life we commemorated was unlike any you will have ever been involved with. Dealt genes that would slowly deprive him of any voluntary muscle control until by age 23, he was completely immobilized and breathing with the aid of a ventilator, he defied the doctors' certainty that he would not live past 25. So, he's been in failing health all his life...just like you and me only without any illusions.
I was one of the last people to have something like a normal conversation with him, a few days before he died in his home at the age of 51. He spent that hour asking after my well being and that of my family, a focus so disarmingly natural with him that I did not notice until later how starkly it contrasted with our relative conditions. All the while we talked that afternoon, he asked the nurse to measure things and adjust his breathing apparatus...he was concurrently conversing and in detailed command of his very deliberate and active health care...as if will alone were what really kept it all going. Only later too, did I realize the few moments of restfulness that crossed his face were the only lull in the constant tension of his battling for life. He was in his own home, able to see his garden, and not in some hospital. For his poor health, that was an unusual situation and all by his decision and his quarterbacking of all the help he could raise and the red tape he could untie.
He completely overhauled my notion of "quality of life": that is to be judged by determining if the person lived according to their own will. The quality of the person, if we may use so gross a concept, must be relative to their oportunities and whether they connected with fellow humans.
Our poets tell us we are each reduced when one of us dies. This I must qualify. I note many who see themselves on one side of a clash of cultures call for the deaths of those on the other side and exalt when those deaths are produced. Maybe we aren't all poets?
On average, in every minute of 2005, 108 people died. It would tax me, introverted nerd that I am, to recall the names of 108 friends. Not being in politics, management or sales, I doubt I have spoken face to face with more than a few thousand people in my entire life. That is fewer people than die in any given hour on this planet. Did those deaths diminish me? I had no thoughts about those people until I read the statistics. A name, a picture, a story to make them real is all one needs but lacking that news, numbers are not people and only by effort of imagination can one stir oneself with joy at their arrival, grief at their going or alarm at how much groceries, diapers and square miles of cemetary are needed per day. Few think of death in that close-up way until it has knocked on their door and I think that is too late. The lives in which you invest some of your own life or see some of your self are felt as a greater loss.
At the funeral today, I cried for the first time in perhaps a decade. In spite of, no because of its inevitability and because it had become a struggle in which so many of us had become involved, there was unbearable poignancy to the end of this amazing fight to be alive .
The "sacredness of life" as a "value" become mere words falling like dirty scraps of meat from the mouth of George Bush while he commits more soldiers to war in Iraq, strives to make unwanted pregnacies end in hazardous back alley abortions and prevents otherwise wasted stem cells from ever saving a real life. Come! Look here instead! See what it means to value life, see what can be done when you actually believe and practice that value.
Mark was not just a mascot or emblem for a battle others fought. Certainly others did fight. The sacrifices of his parents were right to the limit of strength and solvency at times. But Mark galvanized all this. He was a leader. If you imagine a battle scene, enemies emerging from din and smoke plunging at your disarrayed forces from all direcions when someone picks up your fallen banner, yells "this way" and by brute example gets you coordinated and under way, you call them a leader. Our battle is with our collective and individual mortality. In our disarray , some wonder if life is worth the struggles though their struggles are light, some hope that they get a second chance in a magical hereafter, many numb themselves to their ultimate future. Today used to be the future. The future is to rot in a box on which shovelfuls of earth mournfully drum. And Mark rallied us all with a rousing effort to be as much as he could be every moment he could be. We are here. He was here. This is all we know for certain.
Today, August the 17th, new stats on world population were issued by the Population Reference Bureau. Only 107 people die per minute nowadays. To me the saddest thing in these numbers is that 2 and 1/2 times as many will be born in the same time span as die...even though the bulk of the deaths that accompany them are to some degree deaths due to overpopulation. They may have wanted to live but not one in a million of those 107-per-minute will be blessed with the will, wits and resources that Mark had. As numerous as we are, we can hardly afford to help each other live up to our full potentials and we dilute rather than enrich the lives around us.