Memorial Day with a Memoir

I often think of Memorial Day as a time not only to think of those who
died serving our country, but of those veterans from the hemophilia community,
who died from HIV, or who are still fighting the good fight, so that our sons could
live. Their infections and/or deaths expedited the call to identify the virus
that stalked the blood supply, and to find treatment fast.

Bob Massie is one of those. And he’s written about his experiences in a new autobiography called A Song in the Night: A Memoir of
287 pages, $24). I urge you to buy it and read it. It’s the newest book in the
hemophilia marketplace, and it is a gem.
Bob Massie spent 7 years
 in a wheelchair

You may know of Bob from one of several places; he’s a rolling stone,
despite his health issues. Episcopal priest, author, researcher, politician,
human-rights activist, father of three, nonprofit leader. You may recognize him
as one of the people profiled in 2010’s documentary Bad Blood. You also may
have met him first like I did, through his parents’ book Journey, from 1973. Journey
was truly the first book about hemophilia, told in alternating chapters from
the parents, Pulitzer-Prize winner Robert K. Massie and then-wife Suzanne
Massie. This stunning book put hemophilia on the map, and revealed
painstakingly what it was like in the 1960s and 70s to raise a child with this
rare genetic blood disorder.

Bob Massie

Bob now shares his own perspective on his life and also continues
where Journey left off. Without a shred of self-pity, he shares the searing
pain that left him crippled as a child; the loneliness of being left behind and
unable to participate in school or playground activities like the other boys.
Not surprisingly, but admirably, he turned his suffering into something greater,
something that would eventually benefit many. Bob became a crusader against
social injustice in its many forms (his influences reached South Africa at one
time) and despite his physical limitations, he achieved more than an average
person would, without any limitations. His list of accomplishments is stunning,
leaving the reader feeling a bit inadequate: if a person who spent years ill in
bed could do all this, what’s our excuse?

Bob has excelled in many areas and following a successful lived
transplant two years ago, is going stronger than ever as president of a
nonprofit, following a year of campaigning for US Senate. Despite spending
years in a drug-induced wait for a new liver, watching life pass him by, he is
back, strong and focused, and continuing still to make a difference. A Song in
the Night
is less a memoir of what life did to him, but rather how he has made
a life despite so many hardships and setbacks. Bob references his faith often,
which has been unshakable and contributed to his desire to overcome his illnesses
and in turn, help others.
Like our war veterans, Bob Massie has served on the front lines, earned his battle scars, works to make the world safer and better, and above all, is
inspiring. He inspires us, I think, to see the challenges we face, however hard,
as perhaps a calling from Above, a way to persevere and then to serve our
fellow humans, with love. In one passage of the book, Bob describes his
ordination as a deacon. The bishop looked him straight in the eye and told him
his responsibility, his mission, was “to serve all people, particularly the
poor, the weak, the sick, and the lonely.” Bob has accomplished all this, and
This is a well-written book, full of history, personal narrative and
profound inspiration. We should be proud of Bob Massie in our hemophilia
community; he has overcome, with his unconquerable soul.
While this poem does not appear in Bob’s book, I couldn’t help but think
of it, especially as Bob had spent time in South Africa and wrote a book about its repressive apartheid regime. This poem was one of Nelson Mandela’s
favorite, and the name of a movie recently made about Mandela:
OUT of the night that covers me,
  Black as the Pit from pole to pole,
I thank whatever gods may be
  For my unconquerable soul.
In the fell clutch of circumstance
  I have not winced nor cried aloud.
Under the bludgeonings of chance
  My head is bloody, but unbowed.
Beyond this place of wrath and tears
  Looms but the Horror of the shade,
And yet the menace of the years
  Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
Ernest Henley
. 1849–1903

1 thought on “Memorial Day with a Memoir”

  1. Thanks for your review. I am always inspired by your passion for the hemophilia community. It's interesting to me that out of chronic illness, many people find their voice. I tell my son all the time that I don't know who I would be today if it were not for his birth and diagnosis 12 years ago. He, and his blood brothers before him, are the reason I became a nurse. They continue to inspire me every day! I cannot wait to read this next story of Bob Massey's journey with hemophilia.


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