New Jersey HDSA Board member Karl Miran sums up the feelings of many HD families about the new Bob Dylan movie A Complete Unknown, Even though the movie doesn't name Woody Guthrie's disease, those of us in the HD Community have an interest in increased public awareness. Miran's essay reads as follows:
“A Complete Unknown”
and an often-unknown disease
Karl Miran, VP, NJ Chapter HDSA
As a Bob Dylan fan (for 50+ years) I was eager to see “A Complete Unknown”, the
movie that traces his evolution from teenager arriving in New York City to cultural phenomenon.
As a husband and caregiver of a woman with late-stage Huntington’s Disease, I was also
interested to see how the film portrayed Dylan’s well-documented visits to his “first idol,”
Woody Guthrie. In that area one crucial omission weakened this valuable portrayal of the artist.
The filmmakers made Guthrie central to the storyline. In the opening minutes, Dylan is
travelling to New Jersey in the winter of 1961 to see Woody at Greystone Mental Hospital, with
Woody’s recording of “Dusty Old Dust (So Long, It’s Been Good to Know Yuh”) playing. The
visit demonstrates how much Dylan’s desire to meet Guthrie motivated his move to the east
coast. Although it was clearly difficult for the young folksinger to witness the effects of
Huntington’s Disease on his idol, he strives to connect. Bob plays a song that he wrote for
Woody and visits the hospital several other times, the last visit signifying a final goodbye By
1965, when the movie places that farewell visit, Guthrie was less able to appreciate visitors, and
Dylan’s musical career was evolving as he “went electric”, leaving folk music fans disappointed.
A friend, also a Huntington’s caregiver, had alerted me that the film never mentions
which disease was ravaging Guthrie. Moviegoers who don’t already know about Woody’s
Huntington’s wouldn’t know why he was bed-bound, mostly mute, at a mental hospital. The
failure to mention Huntington’s Disease is not the movie’s only omission or re-arrangement of
well-known facts. For the most part, critics have tolerated those editorial decisions,
understanding their value in creating a better narrative about Dylan’s artistic evolution and his
impact on America. However, this particular omission seems to weaken the movie’s message.
In my friend’s words: “Such a missed opportunity!”
To be clear, the movie makers know their craft better than I do. The movie playing in
theaters is outstanding, and it may well earn a boatload of Oscar awards. Further, this critique
does not spring from the conviction that James Mangold or the scriptwriters behind “A Complete
Unknown” owe anything to Huntington’s Disease patients or caregivers. However, if the movie
HAD told the audience about Woody’s disease, it could have delivered a deeper truth (especially
to those who are unaware of HD) in the same ways that Dylan’s songs have always done.
To illustrate how the failure to mention HD is problematic, take two points for which the
movie has been praised: Scoot McNairy’s portrayal of Guthrie, and Dylan’s ongoing relationship
with Woody after that first visit. McNairy says he prepared by studying pictures of Guthrie taken
at Greystone, and through his interactions with other HD patients. His version of Guthrie does
not look exactly like the late-stage HD patients I know, but it is believable, given the unique
course of symptoms every HD patient experiences. The film also demonstrates the young
Dylan’s humanity, as he returns again and again to Greystone. Some critics have said that
Dylan’s initial visit was motivated by a need to “touch the spark”
(https://www.youtube.com/watch?v=oJwy_DObX24 of Woody’s genius, but the many repeat
visits show that Bob had a “sense of the sacred”
https://www.facebook.com/wstenberg/posts/pfbid0358zDUwQ1NQ8kyYTZZ4sfUELMCXe1vD
ivWTWHru4Mj9KkqStd5pSx8K3DtinKGMJGl in this man who could no longer strum his
guitar or sing. His devotion to Woody is especially striking because the movie also shows Dylan
as ambitious, sometimes ruthless and self-absorbed in other contexts. Several girlfriends in the
movie say it clearly: “Bob, you’re really a jerk.”
As HD caregivers, we are all familiar with friends and family who withdraw when they
are unsure what to say, or worried about making the person with HD sad. Those people could
gain so much from understanding the resilient humanity shown by the Dylan, Guthrie, and
Seeger characters in the face of Huntington’s.
Much of Dylan’s strength as an artist comes from his lyrics’ description of the universal
human condition. The stories he weaves focus on good and evil: love, war, jealousy, loss, joy,
and other parts of our reality. Like war and human shortcomings, Huntington’s and other
incurable diseases are still part of the human condition, too. Families today face similar issues
and difficult choices to those Marjorie Guthrie faced in the 1950’s and 1960’s Scientists are on
the path to a cure for HD, but they ain’t there yet.*
As Dylan sang in the concluding verse of “A Hard Rain’s A-Gonna Fall”, the poet’s task,
in the midst of our messy human existence, begins with naming, understanding, and confronting
the evils and ills of the world:
And I’ll tell it and speak it and think it and breathe it
And reflect from the mountain so all souls can see it
And I’ll stand on the ocean until I start sinking
But I’ll know my song well before I start singing
Even though the movie failed to speak this part of the story, we in the HD Community can use it
to claim our opportunity to ‘tell it and speak it and think it and breathe it’ to the world.
* Woody Guthrie, kept a stack of business cards at Greystone Hospital, with “I ain’t dead yet”
printed on the back side.
“A Complete Unknown”
and an often-unknown disease
Karl Miran, VP, NJ Chapter HDSA
As a Bob Dylan fan (for 50+ years) I was eager to see “A Complete Unknown”, the
movie that traces his evolution from teenager arriving in New York City to cultural phenomenon.
As a husband and caregiver of a woman with late-stage Huntington’s Disease, I was also
interested to see how the film portrayed Dylan’s well-documented visits to his “first idol,”
Woody Guthrie. In that area one crucial omission weakened this valuable portrayal of the artist.
The filmmakers made Guthrie central to the storyline. In the opening minutes, Dylan is
travelling to New Jersey in the winter of 1961 to see Woody at Greystone Mental Hospital, with
Woody’s recording of “Dusty Old Dust (So Long, It’s Been Good to Know Yuh”) playing. The
visit demonstrates how much Dylan’s desire to meet Guthrie motivated his move to the east
coast. Although it was clearly difficult for the young folksinger to witness the effects of
Huntington’s Disease on his idol, he strives to connect. Bob plays a song that he wrote for
Woody and visits the hospital several other times, the last visit signifying a final goodbye By
1965, when the movie places that farewell visit, Guthrie was less able to appreciate visitors, and
Dylan’s musical career was evolving as he “went electric”, leaving folk music fans disappointed.
A friend, also a Huntington’s caregiver, had alerted me that the film never mentions
which disease was ravaging Guthrie. Moviegoers who don’t already know about Woody’s
Huntington’s wouldn’t know why he was bed-bound, mostly mute, at a mental hospital. The
failure to mention Huntington’s Disease is not the movie’s only omission or re-arrangement of
well-known facts. For the most part, critics have tolerated those editorial decisions,
understanding their value in creating a better narrative about Dylan’s artistic evolution and his
impact on America. However, this particular omission seems to weaken the movie’s message.
In my friend’s words: “Such a missed opportunity!”
To be clear, the movie makers know their craft better than I do. The movie playing in
theaters is outstanding, and it may well earn a boatload of Oscar awards. Further, this critique
does not spring from the conviction that James Mangold or the scriptwriters behind “A Complete
Unknown” owe anything to Huntington’s Disease patients or caregivers. However, if the movie
HAD told the audience about Woody’s disease, it could have delivered a deeper truth (especially
to those who are unaware of HD) in the same ways that Dylan’s songs have always done.
To illustrate how the failure to mention HD is problematic, take two points for which the
movie has been praised: Scoot McNairy’s portrayal of Guthrie, and Dylan’s ongoing relationship
with Woody after that first visit. McNairy says he prepared by studying pictures of Guthrie taken
at Greystone, and through his interactions with other HD patients. His version of Guthrie does
not look exactly like the late-stage HD patients I know, but it is believable, given the unique
course of symptoms every HD patient experiences. The film also demonstrates the young
Dylan’s humanity, as he returns again and again to Greystone. Some critics have said that
Dylan’s initial visit was motivated by a need to “touch the spark”
(https://www.youtube.com/watch?v=oJwy_DObX24 of Woody’s genius, but the many repeat
visits show that Bob had a “sense of the sacred”
https://www.facebook.com/wstenberg/posts/pfbid0358zDUwQ1NQ8kyYTZZ4sfUELMCXe1vD
ivWTWHru4Mj9KkqStd5pSx8K3DtinKGMJGl in this man who could no longer strum his
guitar or sing. His devotion to Woody is especially striking because the movie also shows Dylan
as ambitious, sometimes ruthless and self-absorbed in other contexts. Several girlfriends in the
movie say it clearly: “Bob, you’re really a jerk.”
As HD caregivers, we are all familiar with friends and family who withdraw when they
are unsure what to say, or worried about making the person with HD sad. Those people could
gain so much from understanding the resilient humanity shown by the Dylan, Guthrie, and
Seeger characters in the face of Huntington’s.
Much of Dylan’s strength as an artist comes from his lyrics’ description of the universal
human condition. The stories he weaves focus on good and evil: love, war, jealousy, loss, joy,
and other parts of our reality. Like war and human shortcomings, Huntington’s and other
incurable diseases are still part of the human condition, too. Families today face similar issues
and difficult choices to those Marjorie Guthrie faced in the 1950’s and 1960’s Scientists are on
the path to a cure for HD, but they ain’t there yet.*
As Dylan sang in the concluding verse of “A Hard Rain’s A-Gonna Fall”, the poet’s task,
in the midst of our messy human existence, begins with naming, understanding, and confronting
the evils and ills of the world:
And I’ll tell it and speak it and think it and breathe it
And reflect from the mountain so all souls can see it
And I’ll stand on the ocean until I start sinking
But I’ll know my song well before I start singing
Even though the movie failed to speak this part of the story, we in the HD Community can use it
to claim our opportunity to ‘tell it and speak it and think it and breathe it’ to the world.
* Woody Guthrie, kept a stack of business cards at Greystone Hospital, with “I ain’t dead yet”
printed on the back side.