John Cottingham's remarks on the failure of the Udall Bill to muster a
majority in the House of Representatives and the mixed reaction they received
prompted me to revive a short article I wrote a while ago. It first appeared in
the Newton-Wellesley PD support group newsletter for January 1994.
James Parkinson's Cat
The boy who picks up a cat by its tail learns a lesson that can be taught no
other way.
- Mark Twain
There are lessons to be learned from the success of the HIV-AIDS
activists. One lesson is that patients do count. There should be no question
that to the medical profession and its allied health care professionals the
welfare of the patient has always been the first concern. Patients' medical
needs have always counted. The lesson of the HIV-AIDS success is that patients'
political needs also count. The gay and lesbian community, which as little as
twenty years ago was socially outcast, found its political voice, engaged the
sympathies of many not at all sympathetic to homosexuality itself, and raised
its personal concern with HIV-AIDS to near the top of the national health
agenda. The lesson of the HIV-AIDS success is that patients and their families
acting in their own interest can greatly advance their cause. For the HIV-AIDS
community the need was first to gain public acceptance for their cause, and then
to insist upon an increase in research dollars devoted to HIV-AIDS based on that
public acceptance. The HIV-AIDS campaign stands with the civil rights movement
of the sixties as an example that political freedom is alive and well in the US.
The motto Liberty which has by Congressional decree appeared on US coinage since
Congress established the US mint in 1792 is no empty boast.
I am not advocating that we Parkinsonians take to the streets. Neither
we nor our disease are outcasts. We, as patients, have neither the sentimental
heart-tug of a child in a wheelchair, nor the pathos of the smooth cheek and
pale brow of untimely death. Further we have, though not perfect, certainly
effective, drugs which give us symptomatic relief. Although we may feel
invisible, or unjustly neglected, because, despite our large numbers, we are no
one's cause celebre; "There Are More of Us," or "We Outnumber You," are hardly a
rousing banners to parade behind.
The HIV-AIDS campaign is driven by urgency. Time runs out; the Reaper
frets. Parkinson's Disease knows no urgency. Time runs on; the Reaper yawns.
It is, however, precisely this lack of urgency which should focus our
self-interest and which should determine our Cause and our Cry: "The Reaper
Yawns." Now there is a banner for a parade!
Those of us with PD are not more or less mortal than others, but what we
have left of our lives is certainly both peculiar and odd. PD combines
inevitability with uncertainty. Its progress is inevitable; its course,
uncertain. If we are to maintain the quality of our lives, we must deal
effectively with both the certainty and the uncertainty of our future. This is
entirely our personal responsibility. Our families can encourage and support
us, our personal physicians can treat our bodies with the best current medical
practice and the latest pharmacology, but finally it is we alone who determine
the quality of our lives minute by minute, hour by hour, day by day, and year by
year.
I try to be a careful writer, and I try to write with enough precision to
give my readers at least even odds in figuring out what I have in mind. The
first person pronoun in that last paragraph caused me much thought. The
singular I , me, my, mine would have made my argument an inspirational message,
a call for the slackers among us to pull up their socks and get with the
program. I would have had to close with an account of some sort of personal
revelation or epiphany and a call to repent. My experience has been, however,
that the miraculous is either so common or so rare that it has so far escaped my
notice, and I have nothing to report in that line. The impersonal personal one,
one's, oneself is best reserved for abstract argument, and I emphatically did
not want to be abstract.
That leaves we, our, ours. The English first person plural has a happy
ambiguity about it; it has a nice vagueness sometimes about whether it means
you, me, or both of us. Precise ambiguity is just what I had in mind.
That each of us alone must keep the ledger, the debits and the credits
alike, of his or her life is self-evident, and hardly unique to those with PD,
and not the issue here. The other parts of our life aside, we may each have to
keep our personal PD ledgers individually, but we do not have to do it alone.
That is, I think, the rationale behind all support groups.
As persons with PD, we have, unasked, been made members of an exclusive
and mystical order, the Ancient and Honorable Order of James Parkinson's Cat.
Speaking of the value of personal experience, Mark Twain once said, "The boy who
picks up a cat by its tail learns a lesson that can be taught no other way." We
hold James Parkinson's Cat by the tail and we cannot let go. This particular
cat scratches, claws, bites, and hisses in its own peculiar ways. We know these
peculiar scratches, claws, bites, and hisses first hand, and not being able to
let go of the tail, we are taught the truth of Twain's remark every day. Our
families see us stumble; our friends see us shake; strangers see us freeze in
doorways. They see the claw marks, but do not feel the claws.
Fortunately, modern pharmacology allows us to tranquilize and sedate our
Cat, at least partially and at least sometimes. Unfortunately, our Cat is a
light and restless sleeper and liable to both predictable and unpredictable fits
of consciousness and bad humor. Until medical research either finds a way to
loosen our grip on its tail or a pill to put the beast into a deep and dreamless
sleep we must live with our Cat. We might as well try to make the best of it,
and it seems to me that the most practical way to do this is to be practical.
The collective membership of the AHOJPC possesses a huge store of
knowledge and wisdom, knowledge and wisdom learned by holding the Cat by its
tail. We, as individual members, each know a little; we, as a Society, know a
lot. Collected, organized, sorted out, and distributed, this knowledge could be
of immense value to each and all of us. This is an area of active research
where we can do more for medical science than it can do for us. Our physicians,
unless they too are members of the Order, can be sympathetic and friendly about
the doorway that paralyzes, the vise that grips the leg and will not let go, the
rigidity that freezes the will as it freezes the feet, or the tremor that is
beyond all patience, but their personal knowledge is not so intimate as ours.
We can speak directly to one another about these things, about the precise way
the Cat bites and spits. In doing so we will not venture into, nor poach in,
nor trespass upon those regions properly reserved for medical science and
medical practice; our own domain is quite large enough.
Is this not true of all medical conditions? Cannot the afflicted always
claim a better and more intimate knowledge of his condition than his physician?
Of course. PD is certainly not unique is this regard.
If we look for advantage in our adversity, we have, I think, on balance,
more to offer and more to gain than most by sharing what the Cat has taught us.
Our lives are changed, but not shortened. Our symptoms are dramatic,
unpredictable, disabling, and public. There are many of us and we come from all
walks of life. We are butchers, bakers, candlestick makers, nurses, school
teachers, dentists, teamsters, physical therapists, and priests. We are also,
and this is important, adults with a great wealth of varied life experiences to
bring to the task. The spectacle of a million persons stopped at a doorway and
unable either to cross the threshold or to back off is diverting, I suppose, but
that these million should not actively consult with one another about their
mutual problem is merely sad.
[Several lines omitted]
* * *
[Added October 4, 1996]
Therein lies the value of associations like our Parkinsn list-server. We
may comfort, annoy, support and disagree with one another, remembering always
that we are all working toward the same end, though that we may disagree on the
best way to get there.
I suspect the reason we were not more successful with "our" Udall bill is
due in part to our political naivete. Possessed of the Truth, we thought the
justice of our cause would be self-evident. Despite Thomas Jefferson's eloquent
"We hold these truths..." in the Declaration of Independence, self-evident truth
seldom is, especially on the first go-round. Life is short; art is long;
politics is forever. Our greatest weapon is our unity and our patient
impatience.
George M. Andes
