Prayers > Jan Michael
Joncas
Update on Fr. Jan Michael Joncas
In 2003 Fr. Michael Joncas was diagnosed with Guillain-Barre
syndrome [GBS]. What follows is an interview with the Catholic Bulletin of
Minnesota, which took place on DATE.
- Give our readers a definition
of your condition.
- Give our readers a brief timeline of when you
first noticed a problem, to the full impact and when you began to recover,
leading up to today.
- Tell us how you felt when you were suddenly
unable to move your limbs.
- What were your greatest fears?
- What brought you the most serenity?
- Who helped you the most during this illness?
- Tell us how you are feeling today and the challenges
that you still face due to the illness.
- What have you learned about life? your faith? other
people?
- You've written some beautiful music over the years.
Were there any songs of yours or other composers that began to run through
your mind during this crisis? Are you feeling inspired to compose anything?
If so, what shape or texture is it taking? Is it dark or bright or joyful or
soul searching?
- What are you reading now?
1. Give our readers a definition of your condition.
There are many names for my medical condition. Two -- Guillain-Barre
syndrome [GBS] and Landry's ascending paralysis -- don't so much describe
the condition as mention researchers who identified its characteristics.
Another -- French polio -- is even less exact, comparing the syndrome to
polio insofar as muscle weakness is a major part of the condition, but recognizing
that people can recover from GBS in contrast to the usually permanent results
of having had polio. Its technical name is acute inflammatory demyelinating
polyneuropathy [AIDP]: a non-hereditary or acquired disorder occurring a
single time ("acute"), involving an
immune system attack on the peripheral (i.e., non-brain, non-spinal cord) nerves
("inflammatory"), stripping them of their protective coating ("demyelinating"),
and affecting many of these nerves in a negative way ("polyneuropathy").
GBS
manifests itself by rapid onset of weakness and/or paralysis of legs, arms, breathing
muscles, and face. It is quite rare, affecting only one to two people in every
100,000. The cause of GBS is presently unknown; thus one cannot protect oneself
against acquiring the condition. Up to 5 percent of those suffering GBS die,
another 20 percent may be wheelchair bound for the rest of their lives. Two-thirds
of those who experience the syndrome continue to experience severe fatigue for
the rest of their lives.
2. Give our readers a brief timeline of when you
first noticed a problem, to the full impact and when you began to recover,
leading up to today.
I spent most of spring semester, 2003, teaching an undergraduate
course on “Theology and the Arts” and a graduate course on “Liturgical
Theology” at the University of Notre Dame in Indiana. On Holy Thursday,
while celebrating liturgy with the Sisters of the Holy Cross at St. Mary’s,
Notre Dame’s sister school, I became aware of some odd sensations:
excessive sweating, peculiar feelings in my feet, muscle weakness so that
I could not lift the chalice and paten to the height I would normally employ.
That evening I returned to my faculty residence and found that my normal
sleep pattern changed. I’d awaken every two to three hours and found
it increasingly difficult to get out of bed and walk to the bathroom. The
balls of my feet felt as though there was an inch or so of a Brillo pad between
them and the floor wherever I walked. I could see that there was nothing
in reality to provoke such a reaction, but I thought if I could just get
a good night’s sleep it would disappear. Finally on Good Friday evening
I called a colleague in the Theology Department at Notre Dame and asked where
he would recommend I go for a diagnosis since I didn’t know the medical
facilities in South Bend. He directed me to an Urgent Care center, but unfortunately,
it was already closed for the day. I determined that I would go to the clinic
first thing Holy Saturday morning, since I really didn’t want to miss
the Easter Vigil as I had missed the Good Friday afternoon service. The night
between Good Friday and Holy Saturday morning was a repetition of the night
between Holy Thursday and Good Friday, with the difficulties getting out
of bed and walking only increasing. At 7am on Holy Saturday morning I saw
a doctor at the Urgent Care center who said that I was simply suffering from “overwork
and nerves”, that I should go home and have a good rest, and that all
would be well. I followed his recommendation, but the symptoms increased
in severity, so much so that I did not attend the Easter Vigil since I would “lock
up” if I stayed in one position too long and I knew that there would
be long stretches in the liturgy where I should be sitting, standing, or
kneeling (the last of which had become impossible for me to do). When I returned
to the Urgent Care center bright and early Easter Sunday morning, the nurse-receptionist
recognized me from the day before, asked about my symptoms, told me that
their clinic was not equipped to deal with whatever I had, and said that
I should immediately go to South Bend Memorial hospital. I drove there and
was admitted in the afternoon of Easter Sunday.
I truly believe that God was watching over me throughout
this period of worsening symptoms since two hours after I drove myself to
the hospital, I could no longer walk on my own. Equally providential
was the fact that my closest diocesan priest friends, Frs. Kevin McDonough
and Tom Kommers, were scheduled to spend a short post-Easter vacation with
me at Notre Dame, so I knew I’d have friends from home to serve as
advocates for me at the hospital. Nevertheless I called my closest friends,
Fr. George Szews, pastor of the Newman Parish in Eau Claire, WI, and Vicki
Klima, director of the Office of Worship for the Archdiocese of St. Paul – Minneapolis,
for their advice during this process and to let them know that I’d
been hospitalized. In an act of extraordinary generosity, George and Vicki
(along with a student-worker in George’s parish) left Easter evening
(after an exhausting celebration of the Triduum!) to drive all night from
St. Paul to South Bend, arriving at the hospital Monday morning. Kevin and
Tom arrived there on Tuesday. As I continued to spiral down into facial paralysis
and my breathing became labored, my friends from home decided that I should
be airlifted to Mayo Clinic in Rochester. Once the arrangements with the “Air
Angels” were completed, I flew by helicopter from South Bend to Rochester
on Wednesday. Almost immediately I was diagnosed with GBS and was placed
in the neurological intensive care unit [ICU] at St. Mary’s Hospital
in case my condition worsened. Since I was rather heavily
sedated for a significant part of the time I was in the ICU, I have almost
no personal memory of the next stage of the syndrome’s progress. However
my understanding is that at the low point I was completely quadriplegic;
most of my cranial nerves were misfiring (so that, for example, I couldn’t
bring my eyelids together for sleep nor could I control the wandering of
one of my eyes, making reading impossible); I couldn’t eat or drink
(and thus had intravenous drips and a feeding tube inserted); I couldn’t
control elimination of wastes (and thus had a urinary catheter inserted);
and I couldn’t breathe on my own (thus leading to a tracheostomy and
hooking me up to a ventilator machine). I think the medical experts were
most concerned that they couldn’t get my blood pressure under control,
that they couldn’t regulate my body temperature, and that I contracted
pneumonia all in a short space of time. Although I had some reactions to
these conditions – thrashing about, asking to have my blankets removed,
having my air passageways sucked out – I honestly think the low point
was harder on my friends and family to observe than on me, since I was on
pain killers. The recovery timeline is easy to outline. I
spent about a month at St. Mary’s in the neurological ICU ward until
I “bottomed out” and was out of immediate danger. I then spent
a month on the ventilator unit, until I could once again breathe on my own
and had enough signs of other muscle restoration that therapy would be worthwhile.
Finally I spent a month in the rehab unit, engaging physical, occupational,
recreational, psychological, and social therapies to prepare me for leaving
the hospital, gradually becoming mobile with the help of a wheelchair, a
walker, and leg braces. I came home to St. Paul on 23 July 2003. I continued
outpatient physical and occupational therapies at Bethesda Rehabilitation
Hospital in St. Paul for the next three months, becoming more mobile with
the assistance of the leg braces, a four-pointed cane, and eventually a single-point
cane. Today I live alone on the University of St. Thomas campus and get around
without any assistive devices (except when the terrain might be dangerous).
I’m still afflicted by unpredictable waves of fatigue, so I have not
yet returned to full-time classroom teaching.
3. Tell us how you felt when you were suddenly unable
to move your limbs.
The first thing I felt when I could no longer move my legs
or arms was simply surprise; in a somewhat detached, clinical way I wondered
what was going on. Rather quickly my feelings shifted to fear and to shame:
fear of how far the paralysis would go and shame that I was now a “damaged” human
being and a drag on my caretakers. I had never been hospitalized in my life
before this, although as a seminarian I had taken two quarters of Clinical
Pastoral Education [CPE] in a hospital setting and as a priest I had regularly
visited hospitalized parishioners, so I had some sense of hospital routine.
I live a fairly independent existence and was used to “making do” for
myself (although I have to acknowledge my family and friends have often helped
with things like grocery shopping and house cleaning). Suddenly I was facing
a life of much greater dependence, relying not only on friends and family
but strangers, and relying on all of them not only for intermittent assistance
but also for basic day-to-day tasks of feeding, clothing, and hygiene. On
a few occasions when my ventilator apparatus malfunctioned I also felt panic;
since I couldn’t breathe on my own and since as a paralytic I couldn’t
make any noise to call attention to my situation, I was afraid that the medical
personnel wouldn’t notice the malfunction before I became unconscious,
brain damaged, or dead. Fortunately, someone on the medical staff always
noticed before the malfunction resulted in any serious problem for me.
4. What were your greatest fears?
With my family and friends’ help and that of the
psychologist on staff in the rehab unit, I was able to identify a number
of additional fears. Surprisingly the fear that I was going to die was neither
my greatest nor even a persistent fear. Perhaps that’s because I was
sedated during the time of greatest danger of death or because my family
and friends carefully kept from me just how sick I was until I had progressed
to a better stage in my recovery. I did experience a fear of death in times
of medical emergency: when the ventilator malfunctioned, as a mentioned above,
or the first few times my trach filled up with mucus and I thought I was
choking to death. But once it became clear that the medical staff was monitoring
me closely and that I could survive the suctioning procedure, the fear of
death on these occasions disappeared. I came to appreciate some of my core
beliefs in a new way precisely as I confronted my fears about dying. Because
I am a Christian, I do not perceive death as obliteration but rather transition
into a new way of being human after the model of Jesus of Nazareth. I do
not presume on God’s mercy. I know that it is quite likely that I will
have to be cleansed of those attachments that keep me from full union with
God, a cleansing that the Catholic tradition calls “purgatory”.
But because I have experienced God’s mercy so often in the past, I
trust in his mercy to me, a sinner, at the hour of judgment. I certainly
didn’t want to die, but I was surprised to learn that I wasn’t
particularly afraid of dying. Much more intense was my fear
of pain. Twice during the course of my illness I underwent a procedure called
electromyography [EMG]. In this test, metal needles are inserted under the
skin of one’s hands, arms, feet, and legs, and electricity of increasing
voltage is passed between the needles to measure the reaction of the muscles
to the stimulus. The pain was by no means intolerable but it was quite uncomfortable.
I still don’t know what was worse: the fear I experienced before the
first EMG when I didn’t know how bad it would be, or the fear I experienced
before the second EMG when I knew what would happen and had to steel myself
against the pain. Also twice during the course of my illness I had a lumbar
puncture, also called a spinal tap. In this procedure a needle is inserted
between two spinal vertebrae and some fluid is extracted for tests on the
presence of blood, elevated protein, etc. One of my sisters had had to have
this procedure decades before me and I remembered it as something profoundly
painful for her. Fortunately, by lying almost totally still during the procedure
and for hours after, I never even experienced a headache from the lumbar
puncture. In this case the fear of the pain was more painful than the pain
itself. Fear of pain also raised its ugly head when I went to have the feeding
tube removed from my stomach. The nurses had prepared me for what could happen
during the procedure. (In the form for which I opted, the elastic holding
the tube in place would be stretched until it popped out, much like snapping
a rubber band). So I prepared myself for a stinging procedure and a few days
of discomfort. But I was surprised to find that the doctor offered me a muscle
relaxant that in fact knocked me out, so I have no memory of the actual removal;
when I woke up an hour after the procedure, the tube was gone and I felt
fine. In a way the most persistent fear of pain happened during my months
of physical and occupational therapy. Although my therapists never pushed
me to physical collapse, twice a day coaxing resisting muscles back into
some semblance of activity brought on real pain, both during the therapy
and in the recovery periods afterwards. But whatever fear I had of this pain
was tempered by the knowledge that I was getting better and that the more
I gave myself over to the therapies and their attendant pain the richer would
be my recovery.
Once again my religious beliefs were helpful in confronting
my fear of pain. A spiritual tradition emphasized in my childhood was that
of “offering it up”, i.e., deliberately joining one’s personal
suffering to that of Christ as a way to share in his redemption of the world.
I find St. Paul’s phrase “to fill up what is lacking in the sufferings
of Christ” to be one of the most mysterious ideas in all of his writings.
I have to admit that while the fear of pain was most intense or while the
pain itself was being experienced I found it hard to “offer it up”,
but I could make that intention part of my prayer before or after the ordeal. In
addition to fears of death and pain, I sometimes succumbed to a real fear
of the unknown. The major way this fear manifested itself was in my wondering, “Will
I ever recover?”. Just as my family and friends had shielded me from
the knowledge that I almost died in the first couple of weeks in the ICU,
they also protected me from the medical staff’s fear that I might remain
on the ventilator and in a wheelchair permanently. I had been given an intravenous
immuno-globulin [IVIg] drip once a day for five days almost immediately upon
being admitted to the ICU. Unfortunately by the first weeks on the ventilator
unit it became clear that this treatment wasn’t working as the doctors
had hoped; it hadn’t triggered much improvement in my condition. At
that point one of the doctors chose to administer another five-day IVIg treatment,
even though this was not a standard protocol; the repeated treatment almost
miraculously jump-started recovery in my nerves and muscles. Another version
of my fear of the unknown was wondering, “Will I have permanent impairment
and, if so, how much?”. Once it became clear that every day I regained
some of the skills I had lost, I wondered how far the recovery would go:
would I ever be able to preside and preach at Mass (I still cannot genuflect
at this stage in my recovery), to sing, to play guitar or piano, to live
without nerve pain and extensive medications? Surprisingly to me, considering
how much of my public persona is connected to music-making, I felt little
fear around losing my singing and playing skills. My greatest fear in this
area, quite irrational since GBS normally affects the peripheral nervous
system and not the nerves of the spinal cord and brain, was cognitive impairment:
would I be unable to teach, to read and write in my academic field, to communicate
with any sophistication and depth? A final version of this fear, although
in retrospect this also seems quite irrational, was my fear of abandonment.
My family and friends were being incredibly kind and supportive while I was
in the acute phase of GBS, but if I were to be permanently disabled would
I become an intolerable burden to them? Again, my religious beliefs helped
with the fear of the unknown. This text from Jeremiah 20:11 (especially as
adapted in Fr. John Foley’s beautiful musical setting) helped me a
great deal: “I know the plans I have for you, says the Lord, plans
for welfare and not for woe, plans to give you a future and a hope”.
5. What brought you the most serenity?
From the foregoing I think you can already see that a major
source of serenity for me was personal prayer. I hope the following isn’t
scandalous to the Catholic Spirit’s readers. I always thought I’d
pray better than I actually did, if and when I had an extended illness. After
all, as a priest, praying the Eucharist and the Liturgy of the Hours is at
the heart of my daily life. What I found was that my personal prayer REALLY
changed while I was in the hospital. Obviously, whatever praying I did during
the sedation was pretty groggy and weird. Once I returned to regular consciousness,
I found that the unpredictable hospital regimen and my own fatigue conspired
to make my earlier prayer pattern and resources unworkable. I couldn’t
preside and preach at Eucharist since I couldn’t move or talk. (When
my eyes could focus again, I was able to watch St. Mary’s daily Eucharist
on television, but that was frequently “bumped” by hospital caretakers’ scheduled
treatments.) I couldn’t pray the Liturgy of the Hours since I couldn’t
hold my Breviary or turn its pages. I could pray some texts by memory (especially
the Lord’s Prayer and some psalms), but often even that took too much
energy. I tried praying the Rosary (that had been part of my childhood pattern
of prayer), but I couldn’t stay focused on either the prayers recited
or the mysteries contemplated. My usual pattern became to use the time between
waking in the early morning and the first visit by medical personnel to do
a kind of inventory of where I was in recovery that day – what I could
or couldn’t move, what did or didn’t hurt – and then ask, “Can
I live with this?”. Amazingly to me, every day I seemed to experience
God saying, “Yes, you can”. I’d turn to the Holy Presence
then, praying very simply, “Thank you for keeping me alive. Thank you
for giving me the strength to bear this. Help me make it through today.”
Every day I’d also ask God, “What are you trying
to teach me?”, but I never received any direct response to that question;
I’m still pondering it. Prayer at the end of the day occupied a similar
place between my last visitor and falling asleep. It became like a litany:
I prayed by name for the people who had cared for me that day – the
medical staff, my visitors, the people who sent cards or email messages,
etc. – and then for the nameless needy ones with whom I shared a bond – the
other patients in my ward, on my floor, in the hospital, those suffering
from GBS or living in its aftermath, etc. After each name or category, I’d
simply say “Bless him/her/them, Lord”. Often I fell asleep before
the litany ended. I wish I knew if the prayer I developed during my hospitalization
was profound and mature or infantile and regressive; all I know is it seemed
to be the only way I could pray given the situation I was living in. In some
ways I miss its simplicity now that I’m farther along on the road to
recovery, but I have incorporated the evening people-litany into the Liturgy
of the Hours. Another source of serenity was the Church’s
liturgy. Before I ever left the South Bend hospital, Fr. Michael Driscoll,
a theology colleague from Notre Dame, celebrated the Anointing of the Sick
for me in my hospital room. As a priest, I have celebrated this sacrament
regularly for other people, in public anointing services and in quasi-private
home or hospital settings. I wasn’t prepared for the tears that came
to my eyes when Fr. Driscoll prayed one of the prescribed Prayers After Anointing: “Father
in heaven, through this holy anointing grant Michael comfort in his suffering.
When he is afraid, give him courage, when afflicted, give him patience, when
dejected, afford him hope, and when alone, assure him of the support of your
holy people….”
Courage, patience, hope, and awareness of support – so
the liturgy named what would become, through God’s grace, sources for
whatever serenity I possessed. I have a powerful memory of
the first time I was able to attend weekend Mass in the St. Mary’s
Chapel. I couldn’t talk very well and certainly couldn’t sing
at all, but I made the responses as best I could. I felt so privileged to
be back praying with the Church in a public way and so grateful to the other
people present – most of whom I didn’t know and probably would
never know – who carried me in prayer by their own attentiveness and
responses at Mass. I remember worrying about how I would maneuver my electric
wheelchair up the aisle to receive holy communion, but somehow when I received
the host and chalice from the eucharistic ministers my mobility wasn’t
so important an issue. I don’t remember the name of the priest who
presided nor do I remember the content of his homily, but I remember his
tone of welcome and his clear conviction that God was reaching out to all
of us – saints and sinners, the healthy and the ill, the whole and
the broken. I was truly privileged to be at St. Mary’s because at least
twice a week, eucharistic ministers would conduct a communion service in
my room and offer me holy communion. Even if the time of prayer was short – these
volunteer ministers frequently had fifty to sixty patients to see in their
appointed rounds – it unfailingly connected me to the Eucharistic Lord,
the source of any real serenity.
6. Who helped you the most during this illness?
Well, ultimately, of course, if my answer to the last question
makes any sense, God helped me the most during this illness! But I think
your question is really directed to the people who touched my life during
my illness and recuperation. The medical caretakers at Mayo
and Bethesda were incredible! Even though I have always had respect for people
in the medical profession (my cousin, Margaret Weglinksi, is an anesthesiologist
on the staff at Mayo and I know how hard and with what dedication she works),
experiencing how medical personnel work increased my esteem for them tenfold.
At the risk of sounding like a “booster” for the Mayo Clinic,
let me just say that I was amazed at the competence and commitment of everyone
who treated me – doctors of neurology and pulmonary medicine and physical
medicine; nurses and patient care assistants on the ICU, vent unit, and rehab
ward; occupational, physical, psychological, and recreational therapists;
chaplains and eucharistic ministers; and a myriad of other staff “helpers”.
To a person, they treated me with respect, gentleness, consistency, and compassion.
My gratitude to my medical caretakers only increased when a significant number
of them who had treated me on one ward came to visit me on another ward when
they had a free minute. Nothing in their job description demanded that they
track my progress, but it was obvious that they cared for me as a person,
not just as a mass of nerves and muscles (or, to be more honest, of buckets
of fats!). Similarly, the physical and occupational therapists at Bethesda
were wonderful: competent, dedicated, and responsible. Even
though it might sound like a cliché, my family was an incredible source
of support for me. The first few weeks when I was in the neurological ICU,
my mother stayed around the clock, catching what sleep she could in the lounge.
During that period my siblings “signed up” to stay with me overnight;
I fear that my thrashing around kept them from having a good night’s
sleep, but I was deeply grateful for their presence (when I could detect
it through my sedation). After the immediate danger lessened and all through
the time that I was in the ventilator unit, my mother and siblings devised
a pattern of driving down from the Twin Cities to Rochester and back every
day. A different sibling would bring my mother each time, usually arriving
in the afternoon for an update on my condition and a report to me on what
the family had been doing; they’d then go to eat while I’d have
a short nap, and would return for another session of sharing before they
returned home during which I forced them to tell me what they had eaten.
(Even though I was getting my nourishment through a feeding tube, hearing
about their meals was a promise of what I would someday be able to eat and
drink.) I really knew I was getting better when they came as a group during
my time on the rehab ward to celebrate the Fourth of July with me with picnic
foods! (Can you tell that we’re a family that loves to eat?) Once I
came back to St. Paul and started outpatient rehab at Bethesda, various family
members drove me there and back. They would also come over with a meal once
a week, providing enough leftovers so I had good food to eat for days. If
I could point to one wonderful outcome of getting sick, it is how close I
feel to my family now and how much more easily I feel I can express it (though,
given my introversion, hugging may always be a problem!).
Outside of my blood relatives, the two people who provided
the most “hands on” care throughout my ordeal were Fr. George
Szews and Vicki Klima. I still can’t believe how they were able to
coordinate their schedules so that one or the other of them was with me nearly
every day through my hospitalization. George is a full-time pastor of the
Newman parish at the University of Wisconsin in Eau Claire; obviously his
priestly responsibilities for weekend worship made it impossible for him
to come to Rochester on Saturdays and Sundays, but he stayed in Rochester
most weekdays. Vicki, as the director of the archdiocesan Worship Center,
would usually be free to come to Rochester on weekends, but arranged her
work schedule to visit during the week as well. Not only did they provide
me with emotional support and conversational distraction, they were often
involved in medical caretaking as well, from swabbing my dry mouth and giving
me sips of water, through patting me with cooling cloths and suctioning mucus,
to staying with me as comforting presences when I couldn’t get to sleep.
In addition, George took on the role of patient advocate, translating medical
jargon into more understandable language and helping me to make decisions
about my own care. Because GBS produces unpredictable fatigue
in its sufferers, I early on decided to restrict my visitors to family and
a few select friends. This was not out of any desire to hurt people who might
have wanted to show their concern and support with a hospital visit, but
only because I knew that I didn’t have a lot of energy, that I had
to marshal my resources for various therapies, and that I could easily have
a relapse. George and Vicki became my “gatekeepers” and did a
wonderful job of directing folks to the Caring Bridge website in lieu of
a physical visit. I’ve already mentioned my two closest diocesan priest
friends, Frs. Kevin McDonough and Tom Kommers, and how they were instrumental
in getting me airlifted from the South Bend hospital to Mayo Clinic. In addition,
they packed up and drove my car back to Minnesota from Notre Dame when it
became clear that I wouldn’t be finishing out the semester teaching.
(Of course, since the initial plan was to come and visit me at Notre Dame
for a little Easter vacation, they took advantage of the ride back to check
out the glories of Chicago!)
Anyway, once my “gatekeepers” decided it was
possible for me to get a few new visitors, Tom and Kevin came down when their
schedules allowed to buoy up my spirits. I was especially touched by their
visits because I know how incredibly busy both of them are: in addition to
serving as the pastor of St. Peter Claver, Kevin is Vicar General – Moderator
of the Curia for the archdiocese (a direct assistant to the archbishop responsible
for the harmonious working of the archdiocesan offices) and Tom is the new
pastor of St. Joseph’s in Red Wing. (It must have been Providence that
Tom’s assignment had him driving from Redwing to Rochester to visit
me, rather than from, e.g., Rush City or Lindstrom!) Tom also
made discovered and set up for me a website at an organization called “Caring
Bridge”. (Fr. Greg Tolaas had a similar website set up for him during
his hospitalization before his death last summer.) While the website reported
changes in my condition to those signing on, it also allowed them to leave
messages for me. Although I could not read the emails during most of my hospitalization,
my family, Vicki, and George would print them out and read them to me at
some point during their visits. Along with the hundreds of cards I received
by snailmail, the myriad internet messages assured me that people were praying
for me. (As one wag put it: “Now you know what all those folks will
say about you at your wake, and you didn’t even have to die to hear
it!”)
Of all the folks who helped me during my illness, the most
surprising was a group of Mennonites who hailed from Indiana, Tennessee and
Kentucky and who were on a three-month rotation in Minnesota. One of the
ministries they undertook was to spend Sunday and Wednesday evenings singing
hymns in the rooms of whatever Mayo patients requested them. Most evenings
the group consisted of 6-8 women, but on occasion men might join making a
total of 12-14 people. Their repertoire was primarily “shape-note hymnody”,
a very distinctive form of American religious music, sung a capella, usually
with modal harmonies. (Those who have listened to the sound track of “Oh
Brother, Where Art Thou?” have heard this style of singing, especially
in the baptismal hymn “I Went Down to the Water to Pray”.) I
often found myself on the verge of tears as they were singing, partially
because their voices were so exquisite and partially because they ministered
to the part of my soul that needs beauty. During the summer
Presbyteral Assembly held in Rochester, Archbishop Flynn took time out of
his busy schedule to make a “sick call” to my hospital room.
We talked about how the Assembly was going (“the best one we’ve
had so far!” he said, with his usual enthusiasm) and he then prayed
for me. The visit wasn’t long, but had a great impact. It confirmed
for me that no matter how consuming administrative tasks may be for bishop,
priest, deacon, or lay minister, the personal mediation of God’s healing
presence is central to the ministry.
7. Tell us how you are feeling today and the challenges that
you still face due to the illness.
Today I am experiencing three major remnants of the nerve
damage I underwent from GBS. First, my fingertips combine numbness and a
tingling, “pins-and-needles” sensation. I can use my computer
keyboard, but my piano-playing is much less dexterous than when I went into
the hospital. I cannot play guitar at all since the strings pressing against
my fingertips cause a fair amount of pain. Second, the same sensation of
numbness and tingling extends from my ankles through my toetips. My toes
have slightly twisted into a kind of claw that makes walking difficult on
occasion, especially when a kind of shooting pain runs through them. Fortunately,
I take a medication that combats the neuropathy (nerve pain) in my fingertips
and feet; while it never takes the feeling away, it makes it possible for
me to use them without incapacitating pain. Third, I am still susceptible
to waves of fatigue and cannot predict when they might take place. My doctors
say that it is likely that I will see improvement in these three areas, but
the improvement will be extremely gradual and could last for another couple
of years. So, it’s the fatigue that poses the greatest
challenge for me. Up to this point I’ve been a rather healthy and vigorous
person (although not even my best friends would call me athletic). Most semesters
at St. Thomas I taught extra courses. I spoke rather frequently at workshops
and other educational venues throughout the country and in parts of Europe.
I served as a regular weekend assistant at a fair number of parishes in the
Archdiocese. I wrote books and articles at both popular and academic levels.
I composed and recorded a fair amount of liturgical music. I’ve tried
to keep myself available for one-on-one ministry with people I have come
to know in parishes and at St. Thomas.
But now all of that has changed. I know now that I will
never be able to teach extra courses at St. Thomas (or Notre Dame, when I’m
there in the summers and the spring semesters of odd numbered years); for
all I know, a regular teaching load may be more than I can handle at either
institution. I’ve cancelled all my speaking engagements outside the
Archdiocese; it remains to be seen if I can return to even a fraction of
the workshops that I used to do. (It’s VERY clear to me that I won’t
be doing any work in Europe since I can’t tolerate sitting in coach
class on an airplane across the Atlantic without “locking up”.)
I intend to continue to help out as a preacher and presider, but the number
of public Masses I may be able to celebrate may be curtailed. I’m returning
to writing (in fact, these answers to the questions the Catholic Spirit posed
are the first real writing that I’ve done since being hospitalized),
but I find that it takes me longer to express what I intend, although that
could simply be a result of aging rather than a result of GBS. I had a collection
of new liturgical music prepared for recording this past summer, but due
to my illness the publication and recording has been postponed, perhaps indefinitely,
since, at least at this stage, I cannot offer vocal and instrumental performances
that I think are worthy of recording. (On the other hand, I’ve always
involved other musicians in the recording process, so it may go forward simply
without my direct participation.) Because of the fatigue I’ve had to
severely limit my one-on-one ministry; fortunately I can always hold these
folks in prayer.
8. What have you learned about life? your faith? other
people?
What a gigantic set of questions! I’m tempted to
respond to the first by quoting Joni Mitchell’s “Both Sides Now”: “I’ve
looked at life from both sides now / … I really don’t know life
at all.” What I mean is that I have gained a more profound sense of
life as mystery and gift. In my bible study classes I do an exercise on the
Greek vocabulary for life: “bios” (from which we get “biology”),
the kind of life shared by plants, animals, and humans; “psyche” (from
which we get “psychology”), the self-reflexive kind of life characteristic
of human beings; and “zoe aionios” (“eternal life” or “the
life of the age[s]”), the kind of life proper to God, shared with human
beings through God’s gracious friendship. I can now honestly say that
these different understandings of life have clearer contours in my own experience.
I’ve lost my naïve sense that my vegetative and animal existence
will simply continue to flourish; the facts of my present physical impairment
and future physical decline are existentially real for me in ways that they
weren’t before my illness. I’ve gained a more profound insight
into the connections between my “physical” and my “psychological” life,
e.g., that when I’m in the midst of profound physical pain, I’m
simply incapable of doing intellectual work. (I think it’s a danger
for many academics to consider themselves “brains on a stick”;
GBS has reminded me of just how embodied this brain is!) I hope that as my
physical life (bios) declines I will grow in depth, compassion, and wisdom
(psyche). But now I am intensely aware that both my physical and psychological
lives are finite and could come to an end with little or no warning. I am
hoping against hope that the spiritual life (zoe), lavishly bestowed upon
me, unworthy though I am, through the Church’s ministry and sacraments,
will never end. I am staking my future that Jesus’ promises to his
disciples are true and will be true for me: “I have come to bring you
life, and life to the full.” One of my favorite poets
is the nineteenth century English Jesuit, Gerard Manley Hopkins.
In an extraordinarily dense poem entitled “That Nature
is a Heraclitean Fire and of the comfort of the Resurrection”, Hopkins
surveys all of the natural order except humanity and concludes:
“Million-fueled
nature’s bonfire burns on”, i.e., ultimately nothing created will
last forever.
When his considerations turn to human beings he says:
“how fast his firedint,
his mark on mind, is gone!
Both [nature and humanity] are in an unfathomable, all is in an enormous dark
Drowned.”
But far from inducing despair, these facts lead the poet
to consider the enormity of God’s gift of to human beings and to Hopkins
himself:
“Enough! The Resurrection,
a heart’s-clarion! Away grief’s gasping,
joyless days, dejection…. In a flash, at a trumpet crash,
I am all at once what Christ is,
since he was what I am, and
This Jack, joke, poor potsherd,
patch, matchwood, immortal diamond,
Is immortal diamond.”
I have loved this poem since the first time I tried to
puzzle out its meaning as a high schooler. I love this poem infinitely more
now because in it Hopkins has given me the language with which to express
what I have learned about my faith as a result of GBS: how beautiful and
fragile this world of ours is, how exquisite and frail our lives, how trustworthy
God’s ferocious love for us, a love that will not be deterred by death
itself. What I have learned about other people parallels what
I have learned about life and faith: they are mysteries and gifts. The Caring
Bridge website had many emails from people I have never met who took the
time to tell me stories of their own encounters with GBS, that they had made
a connection with me through some of the music I had written, and that they
were praying for me. I heard from many folk with whom I had ministerial encounters
years ago – former students, couples whose marriages I’d witnessed,
folks with whom I’m prayed at the funeral of a loved one. I was amazed
that they had remembered me and very touched that they now held me in prayer.
The website also showed what a variety of personalities I am blessed to call
friends: people with great (or odd, depending how one looks at it) senses
of humor, poets, artists, contemplatives and mystics, parents and children.
I have a deeper insight into what holds us together as human beings: our
finitude and suffering and awareness of death; our capacity for great good
in compassionate care for each other; our desire to be in control and our
call to let God act for and in us.
9. You've written some beautiful music over the years.
Were there any songs of yours or other composers that began to run through
your mind during this crisis? Are you feeling inspired to compose anything?
If so, what shape or texture is it taking? Is it dark or bright or joyful or
soul searching?
I’m pleased to note that no songs of mine ran through
my mind during my illness; that would just have increased the torture! I
did find snatches of classical music haunting me intermittently: Barber’s
Adagio for Strings, Beethoven’s C# minor string quartet, Arvo Part’s
Magnificat and Passion, John Tavener’s Fall and Resurrection. The piece
that recurred the most often was my friend, Marty Haugen’s beautiful
setting of Psalm 23. The refrain became part of my daily prayer: “Shepherd
me, O God, / beyond my wants, / beyond my fears / from death into life.”
I suspect that I will be writing some music in the future,
but at the moment nothing is coming to me. I’m focused on finishing
the recording project scheduled for last summer that I had to put on hold
when I got sick. It’s an entire suite of Mass parts dedicated to the
memory of the late Cardinal Archbishop of Chicago, Joseph Bernadin. I have
to say that it’s always been difficult for me to identify the emotional
component of my work. I do not that it is not easily captured in verbal language.
My “happy” songs always have a bit of longing and wistfulness
about them and my “sad” songs always have a tinge of serenity.
I wonder if I’ll ever be equal to capturing what I’m learning
about life and faith through GBS in my compositions.
10. What are you reading now?
Anyone who knows me well knows that I always have a variety of journals
and books that I’m reading. Right now I’m especially enjoying The
New York Review of Books (the subscription is a gift from my friends Tim and
Kathy Kroening-Smith) for its incisive critique of contemporary politics; Graham
Ward’s Theology and Contemporary Critical Theory for its guidance through
the thickets of post-modern theory; Etty: The Letter and Diaries of Etty Hillesum,
1941-1943, a recommendation and gift from my moral theologian friend, Bill McDonough;
Elie Weisel’s Wise Men and their Tales: Portraits of Biblical, Talmudic,
and Hasidic Masters because I’ve always been fascinated by rabbinic wit
and wisdom; and Ursula Hegi’s Sacred Time, a very wise novel about American
family life from 1950 to the present day. I’m not sure if the choice
of this reading matter gives me deeper insight into or distracts me from thinking
about my illness. I do know that they all nourish different interests of mine.
