Approaching the day of memory for our departed loved ones, Patricia Manson shares her experience of dealing with her husband’s illness and death and, above all, of looking ahead with faith. Manson has been part of The Lay Centre family for the past 30 years.
By Patricia Manson
I have been asked to jot down a few thoughts regarding my and my husband's experience in the final period of our life together as husband and wife, man and his woman, here on earth before his death due to the consequences of the slowly and devastatingly degenerative disease SLA (in Italian), ALS (in English). The request, truly quite a compliment, came after a few comments exchanged at table fellowship in the Rome Lay Centre. The title was to be Grief. Dear me! If there is to be any talk of grief or grieving, it will be my personal grief over having to struggle to speak of the most powerful moment of my husband's and my life together during our quite lengthy journeying along what eventually became for both of us the way, the only way. But where shall I begin?
Not in the beginning, nor once upon a time; just a quick glance at that 8-year-old little girl who, after managing to fall in love with almost all of the boys, one at a time, in the third year of elementary school over one entire school year, already knew that eventually one of these quite creepy males (8 years old, remember) would become the he with whom she would journey, from here all the way to there, and eventually beyond. I met him shortly after my arrival in Rome as a student enjoying a year abroad in the city representative of both the Colosseum and Saint Peter's Basilica and all they symbolize. Rome. Here I came, here we met, here I stayed with him and for him through all the ups and downs of every marriage, most blessedly with the joy, steadiness and perseverance granted as the special grace we received when we celebrated our marriage as Sacrament in the Catholic Church seven years after the civil ceremony in the City Hall of Rome.
There is no need to go into much detail; our marriage was very similar to the marriage of many fine couples we had the pleasure of meeting, and in particular, with whom we often worshiped over these many years. Thank God, and I say this exactly as I was taught to always say and repeat by my elders, life was rich and kind to my husband and me; we lived fully within the context of family and community, and were fortunate to be considered an inspiration as a couple, indeed a sacramental reality, especially for the younger people we always favored in part because we had no children of our own. Rome: a most beautiful setting for this pleasurable tale of love between the little African American girl and Italian boy who dared to fall in love, and stay in love.
Then that day came, the day all couples are keenly aware of though rarely wish to think about, when it is time to say ciao, bye bye, arrivederci, looking forward to being with you again but never more as we have known togetherness until now. The final and fatal verdict arrived after many visits from one specialist to another, some of whom probably suspecting but not wishing to be the one to pronounce the sentence: in our case SLA (ALS), the name finally given to strange symptoms that for a while defied definition and allowed room for false hopes. But now it was time to prepare for the final few and very faltering steps of our quite long journey.
And now our long journeying in its closing chapter was itself becoming defined: the way, the way of the cross, or since we are in Rome: the via crucis. I am not yet talking theology or Christian doctrine so much, as real and true, very human experience, the cross we all bear as part of being human.
SLA touches one in movement, in breathing and in swallowing the nourishment necessary to undertake even the most casual stroll through a city park with paved grounds. After the cardiac arrest owing to respiratory problems, my husband was hooked up to a breathing machine, at first only as an emergency measure (tracheostomy) in the intensive care unit, but eventually it became permanently necessary, unless he decided to request to be unplugged, sedated, and left to peacefully GO. It would have been within his rights. He never suggested being taken off the ventilator, but was firm about not being hooked up to tubes that would have very slowly poured liquids into his emaciated body, thus allowing the SLA/ALS to finish its work: total immobility. As he looked me in the eyes with his quite piercing gaze, he said: I would rather die! And besides, what is your problem? Are you afraid of death? You, who are Christian?!
Yes, Christian I am, so, be what you are, girl!
And now we can call it the Via Crucis, more a definition than the name of the path inviting the two of us to follow in the footsteps being traced by the One bearing our cross when it would inevitably become unbearable for the two of us. We were setting out on the last phase, looking always forward in order not to lose sight of the Guide clearing the way in this very new and untrodden territory.
What a pleasure, that at least we two could stop faking it and enjoy within the limits granted these last years, months, days and hours together, man and woman, always together from once upon a time.
My husband had the characteristic sense of humor of the Italian old school: biting, at times even bitter, irony always offered with a somewhat sly smile. A few examples: When asked by the doctor how he was doing, he replied: Not so bad considering I am under house arrest, and am innocent! This one I shared with my priest friends who may have desired a different sort of confession. Not from my husband, who along the Via Crucis was slowly being transfigured, he himself, into a confession.
Another amusing moment came when it was suggested we find a hobby for him to pass the time, otherwise he would become depressed. My husband's response to the doctors, nurses, relatives and friends: Do not worry about my depression; I only wish to be able to take the five steps necessary to get to my desk to enjoy the hobby of my choosing on my computer, not the twenty or so steps to the balcony to throw myself over! And he smiled. Biting irony.
My favorite moments were the home bedroom picnics he insisted I prepare for a hospice staff member, some relatives and a couple of friends, after he had bragged that his American wife made the best Roman dishes he had ever eaten, after his mother of course, dishes I already was familiar with from my Afro-American background: trippa and pagliatawith rigatoni, as an example. We all ate with relish under the amused and very proud gaze of my husband: we ate and gained weight as my husband merely tasted and slowly starved.
But perhaps, for the sake of the invisible but ever present theology and spirituality supporting this tale, I should share the best moment. First, it should be remembered that when the SLA made its appearance upon the scene, this particular comedy was already well underway, therefore my husband the director and I the leading lady had no intention of allowing it to burst upon the scene as protagonist. It was invited to takes its place as a minor character in a divine drama that had been going on for quite some time. Keeping this spirit in mind, you will immediately understand my husband's most piercing comment to all the truly wonderful people of the health care system who offered good service within the humanly possible. He told me to tell them: “You rightly ask if I am well, however I am not interested in being well, but better. Since you cannot help me get better, please, leave me alone with my woman, just assisting me with any eventual physical pain so that I not become too distracted.”
So, we are going home.
March 1st, 2018. With surprising lucidity for a man already under the effects of mild doses of morphine, my husband requested gnocchi for lunch. It was Thursday in Rome, where tradition demands gnocchi. I hesitated because he was no longer swallowing, but decided to satisfy this innocent prisoner's last desire. He very slowly ate ten gnocchi as he stared beyond me, and in the end said: very good!
March 2nd, 2018. He opened his eyes and struggled to sit up to speak with the doctor, who was very good at reading lips (tracheostomy means my husband could not speak). I was sitting quietly on the side, listening to the comments of the doctor. My husband was offering what I shall call his spiritual testament: his mission was to love and protect me, but he could no longer do it and was afraid to leave me alone here in this racist (!) world. The doctor smiled and assured him that I would be well, as he had done all a man could do to love and protect his woman. What a conversation between these two, with me eavesdropping on the sidelines!
March 3rd, 2018. It was time to go. I told the nurses that came in the morning to be gentle, not to call any ambulance, just be there as I went out to Mass because I knew my husband would hesitate to leave towards where he was anxious to go if he saw me lingering in the vicinity.
The Way of the Cross, the road the 8-year-old girl and her little boy friend had traveled along from the very beginning. I left my husband hanging on the Cross with the Risen Lord, with two blessed women beneath, the Mothers, Mary and his mother Ersilia, and all his family and mine who had already gone on. And I went to Mass to be as close to him as possible.
The young woman who had come to our home every day for several hours the few years my husband was house bound and finally bed ridden was at the foot of the bed at the end. She said that the only question my husband asked when he saw her and felt the presence of the other two nurses (three women, lucky man!) was: Where is my wife? When she said I had gone out to do my usual morning tasks, he smiled, told them he was no longer breathing, closed his eyes and left! He died while I too was present, at the Lord’s table. Can you imagine a better ending opening unto a new beginning?
Dove sei? Where are you?
Eccomi! Here I am!