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3/2/97
COMMENTARY: Another view of living with ALS
By THE DICKINSON FAMILY
WE, THE FAMILY and caregivers of Brian Dickinson, would like to respond to the Journal-Bulletin's coverage of the last weeks of Noel David Earley's life (see "A Time to Die," originally published in the Feb. 16 Sunday Journal). We feel we must offer a different view of living with amyotrophic lateral sclerosis.
Our first reaction was that if we had read Noel Earley's story early in Brian's disease, he and we would have been even more devastated and despairing than we were. We might have been hopeless.
Mr. Earley chose to devote his energy during his last months of life to bringing to public attention the right to end an intolerable existence, a position we respect. Others faced with this insidious illness have made different choices because of options that the Journal did not allude to.
One tiny line in the thousands of the Earley story said that the Rhode Island Chapter of the ALS Association "helps people live with ALS." Yes. That's the point. With help one can live with ALS; help is available, and so is hope.
ALS is slowly yielding to the efforts of medical scientists to arrest it, if not provide a cure. We do not know when the breakthrough will come, any more than we did with polio or smallpox, but we can take great hope that more has been learned and done about ALS in the past five years than in the previous decades since it was identified.
Two therapies that delay death are available; several others are in trial nationally and internationally. Research, which continues here and abroad, would be more productive if ALS were not an "orphan" disease - that is, a relatively rare disease for which less research funding is available than for better-known ailments.
People with ALS very often live much longer than the official prognosis of two to five years after diagnosis. The physicist Stephen Hawking has had ALS for some 30 years; Sen. Jacob Javits of New York was ill for 11; several Rhode Island victims of the disease have lived for years beyond projections that neurologists have assured us no longer apply. Brian takes two drugs that have proved efficacious, and his condition is stable.
The Journal-Bulletin says that Brian has chosen to "stay alive as long as he can." That is untrue. He has chosen to fight ALS aggressively for the present and to hope for further progress in overcoming the disease. As a result of his decision, Brian works; goes to concerts, ballets and movies; takes excursions to the beach and goes sailing; travels; listens to CDs; watches sports; reads widely; plays chess; gets his roof repaired, and his trees pruned.
Someday, he may tire of his fight. For now, however, he lives each day with enthusiasm and enjoyment.
One final point: Except for the reference to Mr. Earley's participation in a drug trial at Massachusetts General Hospital, little mention is made of his efforts to manage the disease. Mr. Earley's choices probably were severely restricted by the kind of medical care available to him under his health insurance. A more compassionate system might have allowed him years of life, of opportunities to read books, write poetry and champion causes.
We respect Mr. Earley's efforts to bring to the public's attention the manner of our death and the choices we each might wish to make at some point. Still, we urge other victims of ALS to join us in supporting the fight for a cure for ALS. And while the fight goes on, we hope others will reach out for and, in fact, demand help in living with the disease.
Barbara Dickinson is the wife, and Andrew, Matthew and Jonathan Dickinson the sons, of Journal-Bulletin editorial columnist Brian Dickinson.
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