Review of Marianne Leone’s Memoir Jessie

Jesse

Born ten weeks premature, Jesse Cooper suffered a brain hemorrhage, and survived – with cerebral palsy. In 2005, at age seventeen, he died.

During the course of my twenty-year career as a pediatric and neonatal intensive care nurse, I cared for thousands of babies and children, many who had cerebral palsy. I provided the best care possible – heeded their cries, exercised their rigid limbs, and carefully fed them pureed foods so they wouldn’t choke. But it was impossible for me to know what it was like to be a mother of a child with cerebral palsy, or any of the ill children I cared for.

But actress Marianne Leone knows. In her memoir, Jesse, Leone writes with stark prose, sharing with us her “mask of red rage,” and her “fuck-you double slather of red lipstick,” as she, and her actor-husband Chris Cooper, work tirelessly to navigate the hairpin turns of their lives caring for a child with cerebral palsy (185, 189). She lures us along in their trek, from Jesse’s endless days in the neonatal intensive care unit, through their frustrating odyssey in search of physical, occupational, and speech therapists who would treat Jesse with dignity, and their fevered commitment to convince the school system within their community to integrate Jesse into classes with what Leone calls “able-bodied” students. Leone reminds us that “Jessie wasn’t a CP kid first, and a kid second (57).”

Jesse is more than a mere telling of the speed bumps Leone and her family encountered along the way. It is a story of perseverance, and idiosyncratic family coping mechanisms in the face of Sisyphean challenges. It hurtles the reader into a better awareness of what it means to be a quadriplegic, and non-verbal – which does not equate with being an “idiot (31).” Leone’s memoir is a must-read for families, health care professionals, teachers – all of us – who are on a quest to do what is right for our children, whether or not they are disabled.

Jesse speaks to the human condition – in this case, internal conflict – and the human being in us: Even long after the death of her son, Leone admits she’d rather “stay inside and be alone (248).” But she also knows, in order to still feel connected with her son, she must reach out and talk to other mothers with “babies like Jesse (248).”

Jesse himself tugs at the human being in us. His humor, non-judgmental approach to others, and endurance – he was an honor roll student, and windsurfed and wrote poetry – impels us to take a long, hard look at ourselves and ask, “Who am I? Am I aware of what is happening around me? How do I treat others? How do I want to be treated? What meaningful contributions am I making to others? What if I were a quadriplegic and non-verbal?”

In an autobiography Jesse wrote in sixth grade, he says:

“The most important lesson I can teach/is to see people for what they can do/ and not for what they cannot do (82).”

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Nurses and Ebola

nurses_ebola Associated Press Photo

 

Though the latest Ebola outbreak is mostly confined to three West African countries, three cases – two of them nurses who cared for a patient from Liberia with the virus – have been confirmed in the United States. That pales in comparison to the number of people who have died from the virus in West Africa – 4,484 as of October 18. With such knowledge, we have little reason to panic. And, with the influenza season at our heels, we have larger concerns to contend with: two hundred thousand people are hospitalized every year from the flu, and between 3,000 and 49,000 people die.
http://www.cdc.gov/vhf/ebola/outbreaks/2014-west-africa/case-counts.html

http://www.cdc.gov/flu/keyfacts.htm

But it makes sense that nurses in the US are vocalizing their concerns about the Ebola virus and lack of adequate personal protective equipment. Among the 18 million health care workers employed in the United States, registered nurses comprise nearly 3 million. Nurses are the primary caregivers of hospitalized patients. http://www.cdc.gov/niosh/topics/healthcare http://www.aacn.nche.edu/media-relations/fact-sheets/nursing-fact-sheet

According to the CDC, the “natural reservoir” of Ebola has yet to be identified, so the process of a human being infected is not known. But researchers believe the “first patient becomes infected through contact from an infected animal.” Ebola is spread through direct contact with body fluids, such as blood, vomit, semen, feces, and breast milk, as well as contaminated needles, and infected mammals – i.e. humans. Insects cannot contract the virus.
http://www.cdc.gov/vhf/ebola/transmission/index.html?s_cid=cs_3923

Since nurses, and other health care workers, are exposed to all kinds of body fluids, they are at the highest risk of getting sick when caring for patients with Ebola. If nurses become ill from the virus, who will care for the millions of patients who are hospitalized every year for various other illnesses? The CDC recommends the following personal protective equipment (PPE): disposable gloves, gowns, goggles, and a face mask in the event body fluids splatter. In cases where there is a large amount of body fluids, double gloving, booties, and leg coverings may be required.
http://www.cdc.gov/vhf/ebola/hcp/patient-management-us-hospitals.html

But is this enough? The typical hospital gown is made of cotton material, easy for fluids to seep through. Perhaps double gowning is a good idea, but what if your hospital unit runs out of gowns?

The nurses who cared for the dying patient in Dallas wore full PPE, including Tyvek suits – heavy-duty outfits that look like space suits – and a face shield and respirator mask. They even wore three pairs of gloves and booties. Yet, they became infected. Because the suits were too large, and exposed the necks of the nurses, the CDC recommended they secure the neck of the gowns with tape.
http://bigstory.ap.org/article/f5d8d9bb2f2a44d59dd10042d3e0e57b/existing-protocols-might-not-be-enough-ebola

National Nurses United, the largest union of registered nurses, has reached out to hospitals, advocating for better PPE, training on how to properly use the equipment, and adequate staffing to appropriately care for Ebola patients.
http://www.nationalnursesunited.org/pages/nursing-practice-patient-advocacy-alert-treatment-of-patients-with-ebola

What is your hospital doing to protect your nurses, and patients?

For more information on the CDC’s most recent guidelines when caring for Ebola patients go to:
http://www.cdc.gov/media/releases/2014/fs1020-ebola-personal-protective-equipment.html

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How to Change Fiddle Strings

How_to_Change_-fiddle_-stings

The first time I changed the strings on my fiddle, I started by removing all four of the old ones at the same time, thinking that would be a good time to give my fiddle a thorough dusting. But what I hadn’t considered was the sound-post, until it collapsed after I removed the strings (fortunately, it did not slip into one of the F-holes – the long, curlicue-like openings in the top of the fiddle). That’s why it’s strongly advised to change one string at a time. Which string to start with is not critical, but most fiddlers prefer to start with the G-string (I start with the E string, because that’s what my fiddle instructor taught me after I confessed to her my oversight). You never know when a string will pop out of its slot and break, so it’s a good idea to have an extra set of strings in your case. Hope this helps.

For steps on how to change fiddle strings, go to: http://www.violinonline.com/changingstrings.htm

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Not Just a Reading: Melissa at Westwinds Bookshop in Duxbury, Massachusetts

When it’s a cold, rainy day what better place is there to be than in a bookstore, slouching back in a cushy couch, nibbling on delicate pastries, and letting someone read to you? That’s how fifteen individuals, who were mutually interested in learning more about traumatic brain injuries, spent their Saturday afternoon this past weekend. As the hard rain tapped against the windows of Westwinds Bookshop in Duxbury, Massachusetts I spoke to them about TBIs, then read from my essay, “Invisible Bruise,” published in Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries. Though I relayed a dump truck full of statistics, and read my story, my wish was to engage the audience in an honest discussion of the broader issues related to TBIs, inspiring them to pass on to others their new knowledge of this often misunderstood injury. And that’s exactly what evolved from my talk and reading: a couple, whose daughter sustained a TBI in a car accident last spring, shared their concerns about her suffering from depression. Another woman, with a granddaughter who is recovering from a TBI, asked about how one qualifies for disability insurance. The actor Chris Cooper, and his wife Marianne Leone, who has written a memoir about their disabled son Jesse who suffered a brain hemorrhage related to prematurity, spoke about the roadblocks they encountered when advocating for him to be included in classrooms with able-bodied students. The discussion continued for several more minutes, some vocalizing their thoughts about we view individuals with disabilities, even in the context of those who have not suffered a TBI, followed by others asking how TBI survivors cope with the loss of their careers.

And so my wish was granted: the event was not only to acknowledge my writing, and my TBI; it was for everyone in that room, and for those beyond the room who could not make it.

I came away from the reading with more than the sunny feeling that others benefited from it. Most of the people who attended I had never met before, but by the end of the event, I sensed each individual’s unique energy. As one after another thanked me, they reached out to shake my hand, but I refused. Instead, I reached out and hugged each one of them. They hugged me back.

 

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