Dear Family and Friends: I don’t know if you have ever seen a child without a face.
The question is not rhetorical.
Childhood cancers have slowly disfigured and then slowly killed too many children, too often, in history. Especially in impoverished countries where access to care is very limited. This is not ancient history, but all too recent.
Like June, 2019.
Rhabdomyosarcoma is one such cancer. The long name, for the cancer that is as terrible as it sounds, is from three Greek words meaning rod, muscle and tumor.
Rod refers to what the cells of your muscles of motion (muscles you use to move) look like under a microscope.
They are long, and get longer or shorter, as they expand and contract to move, for example, your eyes as you read these words about your muscles of motion.
Sarcoma comes from two Greek words, “sarx” meaning flesh, and “soma” meaning body (tumor). So, sarcoma is a tumor of the flesh.
Rhabdomyosarcoma, in plain Greek, means a malignant cancer of your muscles of motion (or connective tissue).
None of this matters very much when you are holding such a child in your arms. One such child is Taicha.
When in the United States and Europe there were recent celebrations for the 75th year since World War II ended, a number of articles focused on the fact that there was a haunting silence on the part of the soldiers who witnessed unbelievable horrors during the war.
The descendants of these soldiers greatly regret that they never heard their fathers, or grandfathers, speak of what they saw, felt, and learned from the war. Their decorations for battle were public, their experiences remained hidden.
It seems pretty clear after all these years that the dads and grandads who fought in the war would not, and probably could not, speak about these things, except among themselves.
The lived memories left deep wounds, psychological minefields, and since to share a story is to relive the event, sharing brought them internally to places which they would prefer not to dare to return.
Only modern wars have given the name to what they suffered: Post-traumatic stress.
It is deep and painful.
We are all aware of the tragic suicide rate of the soldiers of contemporary wars.
Post-traumatic stress didn’t just start now because we named it.
It has been alive and deadly since 1945, and in fact, it has had its toxic affect following all the wars ever fought since the dawn of creation.
I say this because, if you have an open heart, and see a child whose face has been devoured by cancer, you also would have a hard time speaking, or even sleeping well, for a long time.
It is not surprising then that when Taicha, who is from far in the north of Haiti (not far in miles, but far measured by bad roads and bandit attacks), returned to our hospital recently to die here (after four attempts here to save her with chemotherapy and radiation), this comment came spontaneously from a young resident rotating through our hospital: “Thank God for modern medicine. We can euthanize her with morphine.”
Euthanize in Greek means “good death”. But is it really?
Those words went through me like a spear.
Is this the starting point for young physicians?
Is the curriculum now teaching that the elimination of those who are suffering is the proper application of medicine?
I suppose this is a logical approach if you are a materialist.
But consider this quote from Cornel West, as he addressed the most recent graduates of Harvard Divinity School: “The materialist is someone who loves instruments and utensils, and fears the perfume of flowers.”
Perfume is the domain of those who are more than embodied in matter, but are also en-souled in it.
xxx
Taicha needed soulful, as well as medical, companionship for the last five weeks of her only five years on earth.
I did my best over these past weeks to spend some time every day with her, to speak with her, bring her milk and ice cream, to encourage her mom and dad, to pray silently and aloud, but the truth was her life was a horror, and my inner dialogue with God was reduced to incoherent babble.
As I would sit with Taicha and look at her pathetic condition, slowly the chants from years ago in the Passionist Monastery would return to my mind. The chants of “Tenebrae” (shadows), which are the ancient and soulful chants that well up in community of believers, while contemplating the suffering and death of the Messiah.
To write the words of Tenebrae would be to present them in a hollow way, but since I cannot sing to you by email and a lone voice does not have the power of communal prayer, I introduce you to some first lines of the laments:
“Look, O Lord, and see my suffering. Come quickly to my aid…
You have fed us with the bread of tears; you have made us drink tears by the bowlful.
Restore us, God Almighty, make your face shine on us, that we may be saved.”
Slowly and surely, surrounding and permeating the horror of Taicha’s cancer, there was “perfume.”
God at work, above and underneath, and all around.
My prayer was no longer internal babbling but song, the song which summons spirit, and Spirit.
This “perfume”, which is the blessed presence of God through Grace, is ancient healing that comes to those who are open to God.
Very often people refuse God because they believe that Good News should mean there is no Bad News.
This is not possible, in a world of free will and broken harmonies.
The Good News is that when flesh cannot be healed, there is a healing deeper than flesh.
St. Damien of Molokai, the leper priest, expressed it well, at the end of a long life caring for people suffering the full body rot of leprosy, in the age before there was medical treatment for it:
“The Lord permits us, now and then, to pick a beautiful rose among sharp thorns.”
What makes us, like the soldier, unable to speak in the presence of tragedy?
What is it that crushes our spirit so forcefully that we are wounded for life, as with post-traumatic stress?
For sure, one aspect is the physical horror.
This is the involvement of our senses.
The gruesome sights, the sickening smells, the shrill cries of pain, the pathetic groans. This aspect speaks for itself, and leaves permanent scars.
Another heart wrenching aspect is that tragedy is often an assault on the innocent. Even in the hostility of war, the number of innocent yet devastated people is legion.
There is absolutely no way a 5 year old child deserves to be mercilessly destroyed by rhabdomyosarcoma.
One practical thing I have learned from situations like this, is to be sure there are no mirrors around.
Taicha is not our first experience with this God awful suffering. The one suffering is much better off if they don’t see what they look like.
Taicha’s first tumor appeared when she was two years old. Her mom told me that she found Taicha crying one day, sitting on the floor looking in a small mirror at her face. This is the image of innocence having some idea of evil, and fearing it. This is heart wrenching.
In the Catholic tradition there is a famous icon of Mary holding her toddler son in her arms. His hands hold her firmly, since his head is turned toward a vision of a cross. She holds him with tight love, her eyes both sorrowful and serene.
Sitting with Taicha, her hands would often trace the new tumors on her jaw, in her mouth, and appearing on her one functioning eye.
She would explore them, not able to understand that these tumors will kill her, but she did explore them fully understanding that mom and dad were an arms-length away.
Mom and dad, who understood everything, and who were also both sorrowful and serene, testified by their fidelity to their daughter to these words of the psalmist:
“Set me as a seal on your heart, as a seal on your arm, for love is as strong as death.”
The third aspect is maybe the worse one. There is a deep, human, existential fear of being annihilated, of being separated from life and from each other, by an abyss which cannot be breached.
This anguish calls all religions into being.
The purpose of religion is to enlighten, encourage, and imagine how a golden bridge crossing this ghastly abyss might come to be.
Very practically, we cannot bear that very soon this person we are holding in our arms so tightly and with so much love, will soon be gone forever.
And there is nothing we can do about it.
When Taicha died Monday past, and we buried her with our holy liturgies and then with our bare hands on Wednesday, this is the reason Taicha’s mom could come no closer to the grave than the nearest palm tree, to which she clung as if her life depended on it. The pain of parting is an inner killer.
The horror, the innocence, the abyss.
For the Christian, the innocence and horror are not unknown to God, in fact are fully shared by Him.
The Risen body of the Innocent Jesus still bears the scars, even if healed and glorified.
The sufferings are precious to God, and if they are inevitable, as they were for Jesus and Taicha, they become part of our common sacred history.
For Christians, the abyss is breached by a golden “way” that binds all people together.
Brotherhood, sisterhood, solidarity, mutual concern and care especially for the most marginalized and neglected.
A web of the love, called agape by the first Christians, celebrated in the Catholic feast celebrated today, called Corpus Christi.
Humanity is one family. We are intimately bound together. The binding is physical, social, economical, historical, soulful and eternal.
Jesus is with us in our humanity, in our communion of heart, and in our communion of bread and wine.
When we live this out, even as two or three, the rose will bloom among the thorns and the perfume will bring deep comfort.
Both Taicha’s life, and the great Catholic feasts of Resurrection, Ascension, Pentecost, Holy Trinity, Corpus Chrisi and Christ the King, all coincide with the climb of the sun high into the northern hemisphere.
Culminating in solstice on June 21, we celebrate physically and supernaturally the season of the most light, calling to bloom and fruition all living beings.
So it was with Taicha.
As her cancer spread, she refused its dominance and clung to light and life. Ever brighter, and with all her might.
She clung to life and love, which became daily more evident in the hearts of everyone involved with her and her family.
Taicha wanted to eat often, and she enjoyed her meals, and when she could no longer swallow solids, she called for soups, for milk and for ice cream.
Taicha spoke a language that became foreign because of her deformed larynx, but her mother and father learned all the vocabulary rapidly, and were always ready to listen attentively, to translate for us, and to act.
When she could no longer speak at all, her family understood the motions of her hand and the slight gestures of her heavy head, weighted with the burden of tumors.
Before Taicha’s good eye was closed forever by the cancer, she would watch youtube videos, and showed herself to be quite adept at managing an iphone.
When she could no longer see in the last days, she substituted music for films.
The blessed sound of music.
Taicha fought to live, and enjoyed to the very end all the good things that were around her, and the best of these were her mom and dad.
She died quietly in the night, with no pain (we did use morphine to control her pain).
Taicha had a good death. A holy death.
She had the perfumes and roses, and the advancing of fullness of light, that euthanasia could not have given her, and which materialists will never understand.
I prefer to stay an old time doctor, even if the times are changing.
Soulfulness is still a powerful medicine.
Please join us in mourning Taicha and all the Taicha’s of the world, so brave and exemplary,
Please also join us in thanking God for her life, and for all who stood by her and her mom and dad, especially the teams at both St Damien and St Luke hospitals, and friends here and abroad.
The two edge sword of grief and thanks will help us to develop the inner gifts of compassion and strength, and give us eyes that are, beautifully, both sorrowful and serene.
Port au Prince
June 23, 2019