Yesterday afternoon a group of four people met to discuss Evan, his disease and decide upon a course of action. It was 90 minutes of discussing Evan's health, mental status, medications, past results, and location, location, location. While Evan has been a valued member of his own treatment team, this time he sent a delegate beside his parents to represent his views. Evan's war right now is being fought on 2 fronts: Depression and Pain; and while he is making good progress on both he is still in a dark place. What follows is a summation of that discussion.
Love, Hope, Peace and Joy all bound together within the complex web of Faith. To a certain extent we are able to wrap our mental fingers around the intangible concepts of: Love – commitment to placing a higher value on the life of another than on our own; Peace – a place of quiet confidence from where we are able to face the tough situations and decisions while being comforted that whatever the choice the outcome will be acceptable; Joy – to hold a position of satisfaction of purposes fulfilled regardless of or in spite of any mental or physical status; Faith – being confident in what we hope for and assurance about what we do not see.
Hope is much more difficult to frame. We know how it feels when it’s present, and we know what it looks when it isn’t. But if we presume that the presence of Hope is yellow and warm, then its absence is cold and dark. When Hope is realized, it is no longer Hope, it is Joy and Peace and Love, and our Faith is kindled by its realization; but when Hope is absent or worse robbed from us, the depths of cold and despair know only one true end – death.
And so it is easy to see that as one holds Hope in a Faith, as the origin of that Faith is vindicated by both the presence of Hope and the results of its maturing into Love, Peace and Joy realized. If one holds fast to Science above all things, then one might wait an awfully long time for the meaning of life to be calculated through an equation to be 42. The scientific process is relentlessly slow, a painstakingly boring in its incremental march toward universal knowledge. In Evan’s case there remain options, but the no remaining options have a scientific basis for success, it has come down to an equation of the gut instinct of the Doctor most familiar with the disease process that afflicts Evan.
For those who look to the Faith of their fathers for a medical intersession of a miracle there has been an apparent lack of miraculous response from heaven. No sudden healing, no command to get up and walk, no shrinking of tumors, only a terrible feeling of hopelessness. We have seen it first hand in the overwhelming of Evan’s ability to remain resilient in the face of a disease that continues to rob him of nutrition, oxygen , and the very will to live. Until . . .
Until the medical community sets pretense and data capture aside and looks to holistically treat out of compassion born of humility. Until cousins sit and chat about things that interest Evan, not curious to find out what interesting things have been happening to Evan. Until a surrogate big brother plays Lego for the sake of playing. Until an Uncle just sits and chills expecting nothing but that time should be allowed to pass. Until Evan read cards from 25 states wishing him courage, good tidings, love and encouragement – “It’s good to read such nice things, it makes me happy”, says Evan.
Hope is not found in medicine and science, but medicine and science can be parts of Hope. Hope is found in not accepting death as a forgone conclusion, but living life as it is today. Hope is not found in past successes or failures, but in realizing that the journey made smoother by learning is a path toward Hope. Hope is not found in a new drug, a current therapy or a future treatment; but a new drug working in concert with present and past treatments brought together in a novel approach does offer hope.
But the truest Hope is found in the combined hearts of all who have known Evan or have come to know him by these posts; it is in your hearts that you hold out all the Love, Joy, Peace and Faith toward him in the Hope that he will get well. As this process has stripped away reliance upon science and the crutches of formalized religion; what has been left is the art of medicine in a seemingly arcane method of weaving knowledge with instinct woven into a tapestry of love and compassion that has been held together with the threads of your thoughts and prayers.
Time has never been on Evan’s side, and it seems that this adage remains true. But we would ask you to consider this reality: If time marches relentlessly toward a future, a future Evan wishes to embrace; should we not engage the time we have with the living of life rather than the avoidance of death? Do we Hope for a future without death, or do we Hope to live Life to the fullest? Does Hope even care about such large and ponderous existential ideas; or is it simply concerned with a desire for pepperoni pizza for dinner tonight?