"a greatness beyond all possibility of calculation, measurement or imitation"
Purchases of this book go to support Eric's care of his son Segev.
Preferred purchase link is https://www.createspace.com/4652145
but the book is available on Amazon as well.
I've been following Eric Fischer's blog about his beautiful and profoundly disabled son Segev for several years. Segev has a condition known as Ohtahara Syndrome, which is a progressive disease involving seizures that often don't respond very well to medication. Eric has spent the last sixteen years taking care of his son, who requires 24 hour support.
Over the last nineteen years, Eric has amassed a collection of poetry that is, with no exaggeration, sublime. I have his first volume, Little Job's Book of Broken Poems, on my kindle, and I've found it meaningful and often come back to it when I need to know I am not alone, that others, too, see the wonder and pain of this world entwined. I am always led to think and feel when I read Eric's poetry and it never fails to create a feeling of bittersweetness that I carry with me long after I've set aside the poems.
Eric's dedication to Segev and commitment to honoring his son and other children who live with profound, severe disability is punctuated with loss and struggle and exhaustion. In one poem, "The Tender Heart," Eric writes that
A tender heart may lose its way,
With resolve returns to win the day.Falling down, feeling broken, these things are to be expected, are unavoidable consequences when one battles each day for another day for one's beloved.
It is not just the tender heart, but also the foolish heart that plays a role in being able to keep going, long day after longer night, weary.
Despite adversity into the fray:
A foolish heart will see the light of day.Eric knows all too well what he's fighting for and what the cost is, and his dedication to his son and to making the world recognize the value that is inherent in all people, regardless of functionality is heroic, although he would likely reject that characterization. He is, in his opinion, doing what he must.
In a poem about Segev, he writes:
The rope that binds his body cannot bind his soul:
The secret of the heavens that define this role,
Never has a dream garnered such a toll.He continues later in the same poem, "Darkness,"
The struggle to survive
Universal and constant
Where no one is asked
Whether they can bare it nor
Want it.Life and death and the things that really matter: Eric's life is wittled down to the essential, as are the lives of other parents loving and fighting for their children and their children's lives. Eric writes in a poem titled "Ohtahara,"
Death is in the fight.
Brought to our knees
With aches of love for our children so affected,
Death is a rampant disease.Eric writes not just about his and Segev's experiences, but also devotes several poems to other children and their families and tackles the heartrending task of the loss of other children to the diseases they and their parents valiantly wrestled with. Of Jack, in "Brave," Eric writes,
Brave brave, little thing,
Across the heavens you will sing.Eric's poetry calls us to feel, to think, to be, to embrace the moment. I can't help but be reminded of Nancy Mairs, a poet and author who has MS, and her interview in PBS's documentary, & Thou Shalt Honor, how she feels called to life:
And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay. We want you to stay enough that we're willing to participate in the labor that it takes. That's perhaps the fundamental of caregiving -- to enable another to want to be in the world. Not just enable them to be, but to enable them to want to be in the world when it would be easier not to.
Eric's message, in the end, is similar--he calls his son to life, he asserts the inherent value in all people, regardless of what they can "contribute." He rejects any and all idea of allowing his son to go gently into that good night.
I am honored to be Eric's friend, to be allowed to bear witness to Segev's beautiful life and Eric's passion for giving Segev the best life he can for as long as he can. I encourage you, if you have not had the honor of meeting Eric and Segev, to visit Eric's blog and Segev's facebook page, and to participate in Segev's support by purchasing I am a broken man/You can't break me.