A Man's Life
Embracing Aahren
by Anthony DePalma
Except for the suspicious hawks that eyed us as we flew
by on the Indiana Turnpike, the trip could be called normal. And for all
I know, it might be as normal as fireflies in a jar for Indiana hawks
to perch on posts while they digest their morning hunt.
My son Aahren and I had begun the drive from New Jersey the day before,
and this was the final leg of our trip into South Bend, where he was to
begin his second year of study at Notre Dame. On the way we had passed
countless other cars tagged with decals from a catalogue worth of colleges
and universities, all loaded with boxes and duffel bags, all making the
same summer pilgrimage.
Like the others, we put up with long hours of highway rumble that muffled
our ears and made conversation in Aahrens Jeep a shouting match.
We stopped far too often for bad food and expensive gasoline. Luckily,
Aahrenwhose name is pronounced conventionally like Aaron, but spelled
in the unconventional spirit of the 60shas developed a taste for
the music I listened to back then. As we took turns driving we could agree
on the same FM radio stations whenever the one we were tuned to dissolved
into static.
It was a classic summer scene, a rite of passage and pride, and it was
all perfectly, splendidly normal. We reveled in that normalcy like no
other family in the vans and cars heading into Americas heartland.
For while others were probably impatient with the routine, we craved the
very commonness of it.
A similar trip just two years before had been anything but normal.
I HAVE TO ADMIT AT THE OUTSET HOW DIFFICULT IT IS FOR ME TO WRITE THIS.
Although Ive made my living with words for more than 25 years, I
have until now been unable to summon any spirit to help me put order to
what Id felt after that first trip west in 1999. I had vowed to
avoid the sentimentality that I heard myself resort to like a crutch when
I desperately tried to talk about what had happened. And I refused to
return to the trite, overused, pre-packaged but oh-so-handy expressions
that, in the dark days, roughed up as
I was by fate, were my only recourse but silence.
Before committing to put this down on paper, I promised myself that I
would give up all literary pretense and simply record what I had felt
thena fear so dark and so complete that it blocked my vision and
hid all the skills I had developed over two decades in journalism. When,
finally, I asked a therapist for help, she told me that of course I would
find it far more difficult than any assignment Id ever had. I was
dealing with Aahrenmy Aahrenand trying to explain what had
happened to him. I would not be a correspondent writing about a subject,
but a father writing about his son.
ON WHAT WOULD HAVE BEEN HIS FIRST DAY OF CLASSES AT NOTRE DAME in 1999,
Aahren was diagnosed with acute lymphoblastic leukemia. In the clinical
argot of medicine it is more commonly called juvenile leukemia or A.L.L.,
which struck me as viciously appropriate, since it is a disease that touches
ALL aspects of our lives.
It all happened in a flash, a gunshot of a revolution that changed our
lives and challenged my own concepts of what it means to be a man and
a father. Aahren had just turned 18. In many ways he already was a man,
ready to take the first steps into his independent adult life. Thus far,
those steps had taken him only a short distance from our house and the
warm comfort of childhood, where hed always felt protected by his
mother and me.
And until just a few hours before the diagnosis, we felt we had watched
over him well and successfully guided him to the threshold of a wonderful
life. I especially felt satisfied that, as his father, I had done just
what I should have for him. I had kept him from harm while making sure
he had more opportunities than I ever had.
One short conversation with the doctors seemed to have changed all that.
I had not been able to protect my son, nor could I do anything now to
make him better. I had to stand by while the doctors and nurses took over.
To save him they had to hurt him. And all I could do was be there.
Until now, I have been too frozen by fear to reveal any of this. I feared
I would lose him. I feared thinking that. I feared saying that. Ive
never written that until now, and even now doing so stings my heart.
I cringe still when I recall how, a few weeks before the diagnosis, Aahren
had asked me to feel a strange lump near his throat that he thought was
a pulled muscle. I didnt know it was anything but a pulled muscle,
either. When the oncologists examined Aahren they told me that the lump
really was a mass of cells produced by the leukemia.
How could I have been so ignorantso unsuspecting? But at the moment
he had asked me to touch his neck he was in beautiful physical shape,
with broad shoulders and a flat, hard stomach. He was working out rigorously
because he intended to enter ROTC at Notre Dame that first year. He had
already undergone the rudimentary physical that the university requires,
and in my eyes he was indestructible. By the time we were ready to leave
him after the three-day orientation for freshmen and their parents that
fall, we did not even know where to find the campus infirmary.
As we neared the car, he had mentioned that his back hurt a little from
sitting so much during the orientation. He expected that the pain would
go away. I told Aahren something about responsibility and safe sex, surprised
at how paternal I sounded. Then I reminded him of how fortunate he was
and how much more he was expected to give back to the community because
of that. Then my wife and I departed.
Less than 24 hours later the world we knew came apart.
Oh Holy St. Jude, apostle and martyr, great in virtue and miracle, I promise
to make your name known.
There, Ive done it. Left with no other options in the days after
Aahrens diagnosis, I had desperately grasped the faith that had
been so much a part of my own upbringing as the fourth son of an Italian-American
longshoreman born in the blue-collar streets of Hoboken, New Jersey. When
she heard about Aahren, my sister-in-law sent the prayer and said it had
worked for her. The part of it containing the quid pro quo bargaindo
this for me and Ill spread the word about youseemed suspect
at first, but that was the journalist in me thinking, not the frantic
father trying everything for his son, including prayer.
The aftermath of Aahrens diagnosis was a constant battle between
intellect and emotion. I knew I couldnt blame myself for not having
protected him, but blame myself I did. I warned myself not to be superstitious
or mystical, yet I took great solace in the sign I got coming out of my
local church one day early in Aahrens treatment, when the sun emerged
triumphantly from beneath the dark clouds of a continuing autumn rain.
My heart still turns cold when I see the words lukewarm, likewise,
or any combination of letters that, at first glance, takes on the general
shape of the fearful disease Aahren is battling.
For strength, Ive relied on Miriam, my wife, and her inextinguishable
spirit. One night near that first Christmas, when Aahren's treatment was
at its most sickening, and we all were at our most desperateexhausted,
afraid, and in tearsshe let us cry ourselves out in Aahren's room.
Then she called us all downstairs for ice cream, signaling silently but
resolutely that she knew that everything would be all right.
Ive also leaned on the shoulders of a couple of extraordinary men.
One is Dr. Peter Steinherz, a specialist at Memorial Sloan Kettering Cancer
Center in New York who has spent 30 years studying and defeating A.L.L.
During the two years of treatment that Aahren has undergone, Dr. Steinherz
has comforted us not so much with the warmth of his words as with the
precision of his science. He tells us what he is going to do and how Aahren
is going to react. Then he tells us when to expect things to get better.
And it happens. He provides order where otherwise there is chaos.
Another strength is Rich Casparie, a friend who walked this same path
with his own son, Ernie. Having fought with AL.L. before, he can brief
me now on my enemys strategy. Ernies bout with the disease
began 12 years ago. Now he is 16, a masterful fisherman and budding trumpeter,
Richs best fishing buddy. A normal kid. From the beginning, Rich
was certain Aahren would be normal too.
Then there is one of my oldest friends, Steve Valero, who has written,
called, e-mailed or sent an instant message almost every day since those
first horrifying moments. I rely on Steve to tell me not to beat myself
up too much for whats happened, and to remind me that the prognosis
for Aahrens full recovery is very good and improving all the time.
The better he is, the better the odds become.
Finally, there is Aahren himself. Strong, determined, more quiet than
I might want him to be but with the subdued dignity of a true hero. From
the beginning, his approach to all this has Lets just get
on with it and get it over with. Very little complaining, never
a loss of motivation. Hes taken everything the doctors have thrown
at him, and more. The disappointment alone could have been crushing. He
had to withdraw from the university after one day. He left behind all
that we had brought out that first trip, and he said goodbye to his roommate
of one day. But he vowed to come back.
After a full year of treatment he was only halfway through the regimen
in September of 2000. But with Dr. Steinherzs permission, we retraced
our steps back to Notre Dame last year. I admit my heart was in my throat.
Aahren had to come home once a month for chemotherapy, and during the
rest of the time his resistance to infection was so lowered by the treatment
that he had to stay in a single room. He was warned not to take even a
sip of beer. He arrived on campus the day after a treatment and was nauseated.
We again moved him into his dorm, unpacking some of the things that had
been in storage at Notre Dame for a year.
Our departure that second year was more reserved than the first. We said
goodbye simply, expecting to see each other in a few weeks, but mindful
of what had happened the year before. We followed that same pattern all
year. Wed say goodbye, pray that everything would continue to be
normal, and a month later hed come back for treatment. Then wed
say goodbye again.
THE PHALANX OF HAWKS ALONG THE INDIANA TURNPIKE this September seemed
an uncertain sign, but by then one more year had passed. This time, we
drove west in Aahrens yellow Jeep. Early Sunday morning he pulled
confidently in front of his dorm and I helped him unload. Two of his three
roommates were asleep inside the suite that Dr. Steinherz has allowed
him to move into. As I watched all the curious parents and eager first-year
kids find their way around the dorm and along the paths of the campus,
I couldnt help but wonder which ones would smoothly start their
university years and which ones stumble over some unforeseen and unimaginable
obstacle.
When it was time to leave, he drove me to the airport, asking if I had
my ticket, making sure I had everything I needed. Aahrens chances
of a full recovery and a wonderful life are excellent, and as we waited
for the boarding announcement he told me of his plans to travel to Europe.
He also wants to begin studying another foreign language to go with the
Spanish and French hes already mastered.
We embraced. I felt his strong back, his broad shoulders, his firm hands.
There still were a few more monthly treatments remaining so I knew Id
see him again in a couple of weeks. But for us, every departure, every
goodbye, now is infused with the significance that only comes from staring
into the face of tragedy. We try to hide those emotions, if only because
it is simply too painful to expose them every time we take leave of each
other. We recognize how much chaos exists in the world, and how little
control we have, but we do not speak of it. Instead, we seek what is normal,
and if we dont find it, we try to create new planes of normalcy
that bring us comfort.
Goodbye, he said, as I headed toward my flight.
It was perfectly normal. Absolutely normal.
Splendidly normal.
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