When I was young I loved sitting under my parent’s desk, tucked away in my quiet cubbyhole, writing poetry. In school, instead of listening to my math teacher, I spent too much time daydreaming and writing. I still avoid numbers, but adore words. This is one reason I am attracted to Eric Fischer’s story. Eric’s book, I am a broken man You can’t break me, is a collection of poetry that centers around life with his severely disabled son, Segev. I discovered it when I began reading his blog a few years ago. I am impressed by Eric’s willingness to express what this life is about. He writes about his pain, fear and love openly.
In I Shall Not Rest, he writes:
I did my best, my son
I heard the call and did not rest
I carried the night like a fire
Where there was cold empty light,
I crawled and spat and did not let you languish alone,
When you stood not in the fight
When you looked at me with careless gaze
I longed to believe in that foolhardy praise
I bore witness to what others could not see,
I gave honor to an unknown strength,
A gift from you to me.
Eric’s son was born following a typical pregnancy. He and his wife had no reason for concern. There were no abnormal lab results or ultrasounds to indicate that anything was amiss. Eric says, “Our third child, Segev, was born March 1998. All indicators and tests showed there was nothing to worry about and the stress levels of a third child are quite different from the first. He was born on his due date. There were complications but they were because of his condition and not the cause of it. Right from the beginning he was not reacting normally, very hypotonic (low muscle tone) with little to no suckling reflex. It wasn’t until one month in hospital that it became clear he was in serious, though not immediately life threatening, condition and so I decided the best thing was for us to take him home.”
He continues, “The MRI of Segev’s brain at three months showed severe malformation. He met no milestones, was declared blind, and never developed motor or verbal skills. The diagnosis of Ohtahara syndrome came years later. Ohtahara is a fatal condition with the vast majority of children dying between the ages of 2 and 5. There are a few cases known of children reaching their teens. Segev is one of them, despite being one of the more severe known cases of the syndrome.” Although most children die before their fifth birthday, Segev beat those odds. He is now seventeen years old.
Segev’s father, Eric, born and raised in Holland, lives in Israel with his children. He says he is not the sort of person who spends time asking why. He uses his energy for the business of helping his son and finding what is best for him. He considers it his job to “Keep him alive as long as he is a willing and able spirit, find the answers and march on.” Segev gives him strength. Keeping Segev alive is a full-time job. He requires constant monitoring and is frequently ill with respiratory infections. Seizures are the main feature of Ohtahara Syndrome, and Segev has gone from one hundred a day to thirty since adding medical marijuana (CBD). He’s also more lively, and tracks objects briefly with his eyes with the help of the oil.”
Eric, a physical therapist with twenty five years experience in pain management, uses his skills to help his son. When oxygen levels drop low, he manages the secretions that plague him and if necessary, does chest compressions to rescue Segev from respiratory distress. Chest physiotherapy, nebulizer use and spinal decompression are part of his daily routine and help keep pneumonia at bay. Eric explains his son’s routine to him as he bathes, changes and repositions him. He sings a bedtime lullaby that brings light into his eyes and the curl of a smile.
Segev’s mother lives close-by. For three days a week, Segev is cared for by her and Eric is able to sleep more than an hour or so at a time. Their two adult children help with their little brother’s care as well. When it’s his watch, Eric never leaves his son’s side.
He writes in his blog that he is “still surprised; by his tenacity, withered by the endlessness of it, delighted by the endlessness of it.” He talks of his own aging, weakening body as well as his son’s. Eric is a poet, but also a realist. He acknowledges that he isn’t able to carry on with as much vigor as he did in the beginning of this journey. It keeps him humble and helps him address his own need for rest and rejuvenation.
“People often tell me, ‘I don’t know how you do it’, or ‘No one could do what you are doing.’ I believe in my heart of hearts that is not true. When called upon we simply have to muster and move forward, even if it appears we are caught in a whirlwind going nowhere. There are no end goals in this kind of extreme care giving. You have to believe in each moment, good or bad, and the connection you make with another spirit, especially if he was entrusted to your care.” For fifteen years he carried Segev’s wheelchair up and down three flights of stairs, which resulted in damage to his own back.
A recent scare brought home to Eric how critical self-care is. He wrote on his blog about a night alone, when his son was in the care of his mother. Dizziness progressed to unconsciousness more than once. He crawled to the kitchen to drink orange juice, believing his blood sugar might be low. He called his daughter and was unable to reach her. Eric kept track of the time so that he could measure the length between repeated unconsciousness. There were palpitations and difficulty breathing, but no chest pain or nausea. He says that the decision to not call paramedics was irrational, but at the time seemed valid because of the negative experiences with rescue personnel he’s had with his son over the years that eroded his trust in them. After another call to his daughter, she answered and came right away.
Eric is rebuilding his strength. For many years he was an athlete. Strong, resilient. He’s feeling the effects of age and steady care giving, but he’s far from weak. He started exercising again and paying more attention to his own physical needs. It can be a tough act to balance, but he’s trying. He understands what’s at stake.
His poetry helps him along. He says in the forward of his book, “Writing does not present an answer for me as much as a way to frame a question. As such, I am given the opportunity to discover what is troubling me, what it is that I have not understood.”
He wears his hair short, he says, to keep from looking disheveled. In photographs I’m struck by his strength and grit as his son looks up at him with soft eyes and gentleness. Segev’s fairness contrasts with his father’s rugged features. Broad shoulders and strong hands hold the oxygen bag as he bends to care for his son. Home is a medical den for keeping Segev alive and as well as possible. Eric cradles Segev, and the images of their smiles radiate love.
From I Shall Not Rest:
Rest as you do, sleeping more or less.
With seizures and pain, love in the gain,
Not bottomless, not soulless
But a sweet caress.
If you don’t hear me calling your name
In darkness, or light,
Fear not that I have abandoned the quest.
I simply took a knee by the roadside
To think for a moment, how to help you best.
I will never give in, I will never rest.
Eric says his poetry reflects his emotional growth. When I asked him about the title of his book, I am a broken man, You can’t break me, he said, “You come to see what you are made of; the bits and pieces, clumsily trying to keep your psyche intact, you are, in the end, reduced to mere fragments, you are broken.”
The sleep deprivation and lack of respite have physically changed him. He has permanent memory loss and decreased concentration. Still, the challenging, overwhelming instances of exhaustion that he’s experienced over the past seventeen years haven’t diminished his devotion.
He goes on, “So each caregiver faces their own particular weaknesses and can only continue if they acknowledge them and work on them. Bits and pieces, even of our personality, break off never to be seen again, but there is a degree of contentment knowing that you’ve scaled mountains and life, love will speak to you eternally.”
Carolyn Murray is a registered nurse and writer. Over the past twenty years she has written articles for Nursing Magazine, The American Journal of Nursing and various online forums. In 1994 ARE Press published her book, Walking the Spiritual Walk, a record of her own experiences in relationships, work and life. Carolyn began writing about parenting and disability in 1998 after the birth of her son, Daniel, who has multiple disabilities related to a rare brain disorder. She loves hearing from others engaged in extreme parenting, and welcomes your emails. She can be reached at firstname.lastname@example.org. Carolyn lives in Florida with her family.Click here for reuse options!
Copyright 2015 Inner Tapestry