We wished Allison Paige Hawkes Godspeed, yesterday. Pollard’s Funeral Home, Methuen, Massachusetts, U. S. A., planet Earth, Milky Way, was very good to our family and to all who came to commiserate with us and to celebrate the wonderful and wonder-filled life of Allie Hawkes. She passed on Sunday, the sixth of December, less than a week ago. It was just after 8 in the morning. Her mother held her as she slept. She stirred enough to struggle to tell Christen that she loved her. Christen had her hand upon Allie’s heart as she left the painful, cancerous bonds of Earth. There could be no better way to finish one’s journey.
We compiled our photos, and Allie’s, and all the newspaper articles that Christen had saved. There were thousands of the former, dozens of the latter, and millions of memories. Christen, Allie’s dad, Gavin Hawkes, her sister-in-law, Kim Andon (brother Joe Wescott’s wife for 20+ years), Kim’s daughter, Sarah, “Grammie” Gretchen Wescott and I, her “Grampa” Bob, sorted and printed and distilled hundreds of photo’s to display during funeral services. Allie’s girlfriends created yet another “photo-board.” We were researching someone known more by others than by us; the breadth and depth of her people-rich life was, in part, news to all of us, even to her most-connected mother, Christen.
During Allie’s brief life, many days, weeks and months were consumed by cancer treatments and effects. Virtually all of those hours were shared, in person, by the world’s greatest mother. Christen became Allie’s primary nurse and watchful angel, more than once conveying the instructions of physicians and the applications of potent drugs, more accurately than nurses, themselves, remembered. Allie and her mother built a bond of mother-daughter love that is rare. Christen had not a burden, but an opportunity to do more mothering than most mothers have. We all tried to be involved, but it was truly a matter of learning from Christen what Allie had just gone through or, thankfully, what she had just done. She was a do-er, most effectively as a creator of friends.
At the funeral home most of the three families gathered to greet the hundreds of friends on whom Allie had left her impact. She didn’t have any casual friends, it seemed, but hundreds of good ones. They, and we, all felt a loss when her light faded out. Indeed, as her Camp Otter, YMCA, Wheelock, Marsh School, Methuen High and, so heartbreakingly, many of her nurses from the Floating Hospital, Children’s Hospital and Dana Farber explained, she was nowhere “just” another student, another friend or another patient. The “Allison Effect” is large on everyone she knew.
Ostensibly, funeral preparations included having her cousin, Sarah Wescott, speak about her lifetime friend. Sarah worked hard to get her words and feelings exactly as she wished to express them. I, Grampa Bob, was also going to say a few words, and though mine were not written in advance, I too had prepared what I wanted to say. In fact, my erstwhile comments were much modified as the afternoon of meeting so many of those who also loved Allie Hawkes. They changed what I knew about my granddaughter. So, I want to share what I had decided to say Friday evening, though could not.
Good evening and thank you all for sharing your love for Allie Hawkes. Before she died I thought I knew her pretty well. You, all, have told me so much more about her; culling the hundreds and hundreds of photos she and others took of the many places she went and events she attended, has made her even more wondrous in my heart and my memories so much richer.
When she was first diagnosed my first reaction was to tell her mother that she would be okay, and I believed it. For the following 19 years that belief was justified as she beat cancer back again, again and again… until she could not. My second reaction, as I would walk each morning, was to pray for a miracle essentially every day, and often, twice a day. I was trying to tell God what the correct miracle for Him to effect was, and exactly when to manifest it. I realize that a lot of our prayers are like that: giving God and Jesus instructions… as if we knew.
What I should have prayed for is mercy and understanding.
Each time our relatively crude medical tools brought her back to remission my conviction that I was issuing the correct instructions was reinforced. Every time cancer came back, I would feel that my miracle-instructions were flawed, somehow, or not specific enough, and I would redouble my efforts and word my supplications to be much more specific as to what I wanted God to do. I hope that what I did helped Allie in some way. I know that as the end approached she became more of a believer, ready to pass through that awesome door alone, always part of my prayers.
So, I had been praying for a miracle for most of her life rather blindly, it turns out. But I recognize, now, that the miracle was right here with us, all along.
In Methuen, Massachusetts a young woman is trying to prepare for a very early death. It’s not her fault; she’s done nothing wrong in her nearly 27 years. Indeed, from the very first she has been a bright, delightful person, quick to learn, quick to love pretty much everybody.
Inside her genes, however, something is not the same as most people’s. She can’t fight off dysfunctional cell growth. Her first cancer arrived when she was about 6, it’s not completely certain when, but she had been complaining of “back pain” for months before her mom finally got her to a “pediatric gastroenterologist” whose connections at Tufts Floating Hospital for Children found and diagnosed neuroblastoma. There can be no worse day for a mother, unless it’s the one approaching inexorably, almost exactly 20 years afterwards.
That’s a short dash, 27 years. In between those dates were 5 big battles with cancer, excellence in school, swim team, graduation from High School, excellence in college that included trips to New Orleans to help repair Katrina-damaged homes, trips to England and Ireland, visit to Paris through the Chunnel, Graduation from Wheelock College, Masters degree through Merrimack College, friends’ weddings, even one she coordinated, a trip to Peru and Machu Picchu only to run headlong into the fifth cancer struggle, now stretching into the last. Loving teaching, early childhood and special needs, was not enough. There never will be the full-time teaching position of which she dreamed.
How does one prepare for death? I don’t know. My good friend, Tony Fusco, prepared for his when an undiagnosed tumor in his brain stem proved inoperable, impossible to biopsy and ultimately fatal. I got to sit with him the last Sunday afternoon before he re-entered the hospital to try some other treatments multiple neurologists had only the faintest idea might help. I’d brought some nice scotch thinking we might enjoy a sip together but his gag reflex was so impaired he dared to sip only water. It was a good afternoon and I expected he’d be home again.
When the only option of a feeding tube was offered, Tony realized – decided – that it was a tube too far: no further treatments, thank you. His world shrank to a room at a beautiful hospice facility that was always busy with visitors and family. He had a huge heart; it took a couple of weeks for it to go to sleep.
Clearly he’d prepared for the end. He was 71. At his funeral I told him that I knew where to hide a flask for when I’d join him on a porch where he now lived, where we could enjoy a sip and analyze the world situation. He was a year younger than me.
How does one prepare at age twenty-six and three-quarters? Without an abiding religious faith it is hard to imagine. She believes in God, but hasn’t had a lot of religious education. I try to explain, but it is uncomfortable, certainly it was a year ago when the lung cancer appeared. It represented a third kind of cancer, and her tiny body could tolerate no chemotherapy. They operated and radiated, but the treatment was still a variation of repair and destroy with the overarching hope that the cancerous cells might be killed before the patient, herself. Her breathing hasn’t been very good – or comfortable – since then. Within a couple of months lesions were found in multiple places: brain, bones, pancreas and more. Now at Dana Farber, they’ve radiated as many places as possible and she’s been taking an oral chemo pill with side effects. It tended to slow down the growth, but never stopped it and now isn’t slowing it much, either.
There’s only one door open to her… to a place where the weaknesses of her body will no longer be a problem – a place where her health will become perfect. One needs a reason to hope in order to contemplate passing through that door, alone. Observers might say that she has no choice so “…she just has to deal with it.”
What does that mean: deal with it? If one has any trust in God it should be clear that trying to pass through when angry and bitter is probably not the right approach. One school of thought is that when you pass you’ll find exactly what you believed you’d find. If that is a fade-to-black scenario, and hopeless, then that is what it will appear to be. I believe that there is an eventual judgment, an audit if you will, of how well your tests were passed – tests you knew were coming when you agreed to accept the lifetime just ending. Your “you” or your soul, may or may not have aced everything. The life just ended may or may not be the last one you need to make your ascension, but Redemption is the unfailing lesson of the Bible. It doesn’t make sense that in the matter of life and death itself, that the opportunity to redeem oneself would be absent.
For the soul, the agreement to accept a new life that includes the needed tests, is the greatest act of love expressable.
Another path of spiritual guidance says that not only are we responsible for our un-passed tests, or “karma,” but also for our reason for being, our “dharma.” Both are part of judgment. The more aware we are while on this side of that door, the more likely we are to meet and exceed the reasons for this life. Life is not a knife-edge: Hell on one side and the gift of Heaven on the other; it is a path made broad by our free will. The choices we make have meaning.
When someone passes very young, there has been little time to make bad choices, which is to say, few sins have been committed. At the same time, few opportunities have presented for passing tests. Maybe a life that ends in youth is lived sacrificially so that those around you can pass their tests. Living that life is your test: a unique expression of love.
From the limited, somewhat fuzzy understandings of a human lifetime, this is my most comforting perception of the young lady’s life: one of sacrifice. Neither I nor anyone else on this side of the door is privy to the purposes of the lives of others, and barely able to grasp the meanings of our own. Still, this observer has recorded no imperfections in our young patient’s life.
Is she comforted thereby? Does she perceive the success of her life? Or does she feel she’s been punished or singled out for “bad luck?” I try to tell her to not fall into those ideas, but to approach the door with an open heart and mind, accepting of the possibilities of immense love on the other side.
We had take-out from Chipotle’s tonight. It’s pretty good, although hard to take home
without it’s becoming cold, but still tasty.
I went out of my way a few miles to get it, even though I nearly pass
one on my normal way home. When I
arrived the place was packed, unusually so – extraordinarily unusually so – for
a weeknight at this particular mall full of restaurants.
They were hosting a fundraiser for a five-time cancer victim
who had been on the local swim team in high school, in between cancer battles,
and who has made nothing but friends in her first twenty five years on
Earth. The swim team was sponsoring the
event during which, for several hours, Chipotle would donate not five or ten or
fifteen percent of revenues from identified supporters, but an astronomical
thirty-three percent thereof. By the
time I left the wonderfully noisy establishment, the line had expanded from the
long one I waited in, to one that extended through the double doors. I had tears in my eyes.
The ultimate beneficiary is a granddaughter. But that isn’t the topic… not really.
I work in a small city beset with every social ill, discomfort, and disruption there is, from drug abuse to gangs to illegal entrants on welfare. Yet it has its own vitality, too, with hundreds of small businesses, including several that expedite everything from cars and furniture to cash back to the “home” countries. Driving along the best route to the Chipotle restaurant I passed blocks that once were nearly pure Italian, now nearly pure “Hispanic,” although none of the residents come, actually, from Spain.
Looking at the myriad signs hanging from brackets or
otherwise affixed to the storefronts, I was struck by all the forces, factors,
influences and opportunities to create something, that had come together to
form the human consciousness that had created this or that sign in
particular. And for that matter, that
had created the things on display in the windows, or the very windows or the
cars parked in front. In the boundless
(we think) Universe of planets and places of every shape and kind, how
insignificant and majestic each of those creations are. Why are they what they are?
Across the street were new apartment blocks of certain size and shape, in certain colors chosen from millions of colors, made of materials natural and invented, but made – created, by people, whose purpose and motivation may have been garnering money, another human invention, but whose product, however important to the net occupants, is, in the grand scheme of things, so infinitesimally tiny as to be invisible, which is not to say, meaningless. One can rightfully assume, I believe, that every human-conceived and created thing or, I suppose, idea, is meaningful. Indeed every thing is or was meaningful in a large manner at some time, and the fact that no one we can find remembers its large meaning in no way detracts from its infinitesimal and utter importance.
How is it that we mere specks of tissue on this planetary
mote have found within ourselves the need and the ability to create
things? How is it that we have invested
so much of our cosmically virtual instants of life to the work of creating
things, but even more astonishing, to devise ways and means to care about one another… like the five-time
cancer patient who has created of herself, in spite of constant physical attacks
on her tiny body, a teacher to children?
That so large a fraction of our blinks of time is spent
creating ways to comfort ourselves and our children, is logical and to be
expected, one would think; but, how is another such large fraction of our time
consumed by caring for others, unrelated, most likely and unmet, even more
likely? Chemistry? Cosmic rays?
Hmmnh. What is the point?
Many of us human specks think there is no point. To they who agree, apparently one should have as much fun as possible, as much sex as possible, own as many things as possible, be they items for sale behind that singular window in the building built as it was with the certain kind of sign saying what it says on the street where I passed, or the painted apartment blocks with unknown people in them… unknown at least to me. If the things one owns happen to bring the owner more fun and more sex, then he or she has hit “life’s lottery,” making him or her “lucky” despite the impossibility of luck as a force working on the dust-mote of a planet we call home, else there would be something larger than our atoms and selfishness.
The house a semi-handyman lives in is full of things that he
has made or perhaps modified or built because of need or artistry. They are pleasing
to him, for a hundred reasons, perhaps even to impress his wife or mate. Oftentimes they were argued about in the
concept, but he still “did” them, sometimes to praise. But, why?
Why could not things have simply stayed the same? Someone else crafted them as they were, or
damaged them to leave them so. Barring
concerns of safety or comfort, why not leave them alone, tan instead of green,
yellowish instead of rose, blue instead of stained and polished wood? Whence came the compulsion, by anyone, to change
them, all those things?
There may be, a billion stars away, a planet with what we call astronomers looking through what we call telescopes and barely detecting the changes in brilliance of our little star as we circle across its disk of light. If a little more “advanced” than we they may have detected radio signals or nuclear blasts on our little speck and feel compelled, somehow, to let us know they know. We will. What would it matter, the color of my house or socks or fingernails, to any of those distant, distant cousins? Or, to us, theirs? But they and we, matter above all of our respective, awakened histories, to one another. Interesting, that.
Where does freedom live?
Is there some reason, aside from novels and movies, both strange aspects
of humanity, to believe that only planet-wide, homogenous people could ever
advance sufficiently to contact other life?
Isn’t science most properly an affirmation of freedom? Freedom to wonder,
investigate, experiment and explore?
Freedom to challenge “truths” and to postulate new ones? A billion stars away, would the search for us
be a scientific endeavor or a military one?
Or, as many appear to believe, increasingly over many
decades, is freedom, the essence of individuality, an impediment to “progress?” If it is snuffed out on our Earth-speck, will
the Universe care? Or is freedom a blip
in the history of humanity, otherwise destined to be controlled by more
powerful elites, inexorably planet-wide?
How is it that humans evolved to invent democracy and the concept of
republicanism? Cellular luck? Not possible if there are no philosophical
forces, like “luck,” operating outside of simple existence. Did biochemistry produce democracy? Or a nation founded on self-government and
limited central powers?
And if “freedom,” the inherent rights of individuals to both
succeed or fail, were to be snuffed out on the tiny mote of matter we call
Earth, would it matter to our brothers on that other speck a billion suns away? Would it matter here?
A patients view of the doctors, just before going into surgery.
Few topics or “matters” matter as much or generate as much
discussion and political malfeasance as health care, and not really “care,” but
coverage. Coverage is where the “easy” money is. “Coverage” is like a giant public works
construction project: easy to skim from.
It’s virtually impossible to get any graft – or campaign contributions –
from individual medical procedures, but insurance conglomerates and hospital
corporations and the pharmaceutical industry are deep wells for craven
politicians. Consequently, those same
politicians are willing to expose the federal budget and debt creation to the
medical “field” to the benefit of all, and even of patients sometimes.
Money, money, money.
About one-sixth of the U. S. economy is tied to “health care,” but a
much smaller fraction is tied to CARE, itself.
These are huge industries with gigantic advertising, promotion and
bribery budgets. The ever-pure United
States calls those filthy bribes campaign contributions… or, they might be
“donations” to colleges and universities for research and production of new
doctors who, coincidentally, will be fully committed to pharmaceuticals,
chemotherapies, surgery and maintenance for life – or death. It’s all expensive.
Cancer is one of the cash cows of medicine: the big
shibboleth in human caring and willingness to help others. People fear it, and rightly so. Breast cancer is a powerful subset, and so is
pediatric cancer. We love kids and care
about their health more than for any older group. Kids are helpless and pathetic; humans feel
these things and sacrifice to raise them from complete dependency, to minimal
independence, to experimental independence, to sports and education and
personality development and, one day, separation into adult-hood. We hate any interruption to these things and
sacrifice to facilitate the stages of normal childhood. Cancer is a Hell of an interrupter and we want to pay to stop it. And we do.
Billions of dollars have been raised by the American Cancer Society, for example, and they claim a 79% rate of actual cancer expenditures: mostly for research, but a large amount is for “soft” expenses that help those who are in treatment and their families, and other non-care, non-research uses. A big pile goes to run the Society, of course. To its credit, A.C.S. does a lot of good along the paths it sees fit, and it’s much more efficient than the federal government, a low bar. Sadly, despite its widespread use of children to raise its millions (Relay for Life, anyone?), only a small percentage of ACS dollars are employed to solve pediatric cancers.
In one case Prudence knows well, a 6-year-old girl survived
neuroblastoma after much chemo, operations, stem-cell harvests and replacements
only to fight through it again 4 years later, with more of many of the same
poisons that forced the cancer to retreat the first time. Five years later, more chemotherapy to force
a third retreat. “A miracle,” her family
declared. 3 years later osteosarcoma
attacked her right tibia, part of which was removed with cadaver bone up to the
knee. More chemo – same crap as earlier
times, same poison to push the cancer back.
College and Masters degrees completed, 6 years later the fifth attack
and fifth battle with cancer, now in the thoracic cavity pressing on the
lung. The bone cancer was a not rare reaction
to earlier treatments; the chest problem a recurrence of the bone cancer, by
genus. Same poisons prescribed and
administered, except she was unable to tolerate any more of it. Twenty years of treatment, constant news
about this and that breakthrough therapy, DNA, customized immunology, yada,
yada, yada… same attempts to kill the cancer a little faster than the patient.
When the young woman with the lengthy, miraculous, cancer
survival history heard what kind of poisons they were planning to pump directly
into her bloodstream, she naturally pointed out that it was the same crap she’d
received the last time! Was there
nothing better? Newer? Apparently not. Bring
us your sick children and we will poison them for you in the hope that the
cancer cells will die first and we can hold your child back from the brink of
death.
Medical students arrive at medical school with science knowledge –at least biology, maybe chemistry – ready to be taught some skills, mostly about using and understanding the data produced by wonderful diagnostic electronics, and about the latest in pharmacological weapons to counteract natural biological weaknesses, failures, breakdowns, related pains and mental/emotional discords and incongruities. There is a lot to learn. If surgery is the interest, there is a lot of practice. Students develop likes and dislikes that lead them to one specialty or another, or, for many, general health and well-being such as “family” doctors ought to know. Some of these general practitioners are really “internists” who understand “internal medicine” as distinct from “external medicine,” one supposes.
In any case, new doctors are taught according to fairly rigid protocols and traditions by people whose adherence to standards is well known… and respected. Indeed, it is only by proving one’s own adherence to those standards that a doctor will be licensed or safe when sued. “Recognized” standards, “current” protocols, “best” practices – those are the only defense a doctor has. Where is the profit for leaving medical orthodoxy?
Does this mean that “doctors” or “big pharma” are blocking the introduction of miracle cures that an obscure researcher somewhere has developed because traditional medicine would not? Well, “yes,” and “no.” I think, or at least hope fervently, that the answer is “yes” although there is no intent to do so; and that the answer is “no” because there is no intent to do so. But, the inhibition of new ideas is almost inevitable. Thankfully it is not impossible and progress does get made, inventions are developed and made marketable – and trustworthy – and new drugs are eventually approved. So, what’s the problem?
The problem is that the new drugs are rarely giant steps –
sometimes they are, but not often. This is because most research is built on
previous success and lines of inquiry and wide departure from the reservation
is not very likely – it doesn’t get funded.
Pharmaceutical manufacturers are looking for sure things. Often the greatest advances are side-effects
of drugs, new and old, that coincidentally prove beneficial elsewhere. More power to them.
Similar effects produce medical technology like, for popular
example, knee replacements and hip replacements. Now very reliable and long-lasting, such
replacements are commonplace, almost to the exclusion of alternatives. Could the damage and erosion of joints be
prevented? In most cases. Are there nutritional preventions that are
still regarded as anecdotes, not science?
Absolutely. Do you suppose that
part of every knee replacement is dedicated to learning how to prevent knee
replacements? Well, no.
Americans, and most residents of highly developed countries, eat themselves to death, drink and drug themselves to death, smoke themselves to death, fertilize and pesticide ourselves to death, and so on. For all of our health clubs, gyms and YMCA’s, Americans tend, on average, to not take very good care of the bodies we are born with and, now that parts can be replaced by our remarkable “repair, replace and maintain” medicine, there seem to be fewer reasons to worry about the consequences of ice cream, sodas and cheese-burgers and lack of basic exercise regimens. We are told 8 times every half-hour by our flat-screens that we need never suffer from aches, pains, discomforts, anxieties or depressions. There are pills for each of these maladies. In fact, there are separate analgesics for shoulder pains, neck pains, knee and foot pains, back pains, headaches, migraines and insufficient sleep. People who have allowed apnea to intrude on their ability to sleep can get a C-Pap device to counteract it. What’s to worry?
What do all of these OTC chemicals do to us? Some of the long-term effects are known, not
the least of which is liver damage, but it’s slow, virtually unnoticeable,
until it isn’t – kind of like moderate smoking.
Sugar and alcohol also have cumulative effects, if not simple diabetes, then an acidification of body chemistry that weakens the immune response to invaders. Too much gluten, perhaps? The American diet is awash in wheat and wheat proteins, right down to canned tunafish (only one brand is clean). Tunafish? And lots of other products: vinegar, puddings, many candies, gravies, prepared foods of all kinds include wheat starch, “hydrolyzed vegetable protein” and on and on. Many people know they are allergic to gluten, far more do not… know, that is. Skin problems, digestive problems, immune problems and, of course, weight problems, stem in large part from too much wheat in our diets. The body tends to become allergic in the presence of too much of the same thing – often the food you like the best, as well. But, that’s no problem! There are multiple crèmes and pills to fight off the effects of our odd diets, so many, in fact, that they must be profitable enough to purchase TV advertising nationwide. Do you ever wonder if every prescription for these somewhat dangerous drugs includes a small amount of money to fund prevention of gluten intolerances? Nahh. Bread, cake, doughnuts, fried clams, stuffing, ice cream, mayonnaise, salad dressings, sub-rolls, pita, crackers and… and… whatever, are too tasty to forego and, besides, “they” have things for that.
When Dwight Eisenhower left the presidency he warned America
about the encroaching power of the “military-industrial complex.” Rightly so, although that sloppy circle of funding
and influence has managed to keep the country fairly safe in an uncontrollable
world. One can almost hear the words of
a true outsider warning us against the “medical-industrial complex,” although
almost no one would listen. On the edge
of Boston and Brookline there is a street called Longwood Avenue where
hospitals have grown into connected proximity.
It’s starting to look like Las Vegas.
The insertion of politics into health care really got moving with the “Great Society” in the mid 1960’s. It hasn’t been all good despite the public intentions of the socialists who caused the Great Society to be codified. Today federal funds feed into the insatiable maw of modern medicine, and to help it along, every Congress adds new mandates for care and coverage. Combined with the primacy of welfare (federalized at the same time) the general interface with patients has trended to impersonal, if not de-personalized, care. The vision for health care is still greater impersonality, robotics and, again, health orthodoxy that satisfies… umm, well, the federal government, and “averages.”
No one is going to stop the money. If we have to borrow from our 5th descendent generation, by God, we’ll do it! No one who needs a new hip, rich or poor, will be denied one! What? Do we want to have a society where there is one level of care for the wealthy and another for the poor? With enough agitation and politics anything that needs a licensed medico to accomplish will be funded. Trans-gender mutilations? Where’s the checkbook? Prudence would advise that there is not enough money, or desks for nameless bureaucrats to sit behind, to provide all the repairs and drugs that are known, to every person who thinks he or she needs them. Maybe robots will provide more even-handed care and cost less than humans. Not so far.
