This blog post poem is in honor of my dear, creative and caring nephew,
Steve Dezember II
(October 26, 1982 - April 2, 2020)
Even thought ALS robbed him of doing almost anything, Steve chose to love, to stay positive, and to create art. Mostly confined in his bed or wheelchair, he and his wife Hope figured out how he could create and, by selling his paintings, help provide for them, as Hope left her career to care for him full time.
This poem was first published in my book Still Howling, in 2016.
The painting, Hope, by Steve Dezember II, is the art on the book cover and is at the bottom of this post
Canvas of Life, Look Closely
Inspired by the painting Hope
by Steve Dezember II,
depicted on the cover of my book, Still Howling.
“At first, when I learned I had ALS,
I was resentful, and then,
I realized,
I didn’t want to live my life that way.”
Steve Dezember II
“You take what life gives you
And you make it work.”
Hope Cross Dezember
I
From a distance
The painting is beautiful, abstract, non-representational.
It is a swirl of colors — like life —
And bursting through the midst of it all
What could be
A white flower — white rose on rose.
To me, this symbolizes hope,
A quality that doesn’t come automatically with life;
We must find hope.
Move closer — look closely,
See the swirls? What do they look like?
Yes, wheel tracks.
They are the prints of my nephew Steve.
What else do you see?
Walking with the wheel prints
Are the prints of Hope.
II
Hope steps in stride with us if we allow
And don’t insist on painting
Alone.
III
In August 2011, when Steve was 28, ALS found him.
Steve and Hope married two months later.
By 2013, Steve had lost almost all motor skills,
Including the ability to speak with a voice,
But he could move his lips.
Hope read his lips and spoke his words.
In 2015, after acquiring a communication device
And through social media, Steve planned a surprise
Birthday party for his wife.
In August 2016, Steve exceeded the limits
And defied the doctor dictates of five years to live.
IV
In spite of it all,
He creates.
And he loves.
As stated on driveforacure.com and hopeforsteve.com:
“ALS has taken a lot from Steve including his ability to move,
eat or even breathe on his own, but it has not taken his
drive for life or his ability to drive his wheelchair.”
Steve’s paintings, the websites state, are “an expression
of the creative freedom Steve still experiences, his drive
to keep fighting and to share his love.”
V
Steve + Hope.
They could complain.
They could resent.
They don’t.
Instead, they use what they have
To create
Beauty
And meaning
And inspiration.
They are artists
Of the canvas of life.
Hope and Steve, October 2011
Photo by Raymond Adams
Hope by Steve Dezember II (with Hope’s footprints near his wheel tracks)
Hope and Steve, December 2019