The Yale Journal for Humanities in Medicine

Writing for Life

Martha Deed
mldeed@verizon.net

           

            A black, black cloud
            flew over the sun
            driven by fierce flying
            rain.
            -William Carlos Williams (1958).
            (I wanted to write a poem. Beacon, p. 4.)

 

William Carlos Williams wrote his 13-word first poem at age 16 after learning that he had a heart problem that destroyed his dreams to become a track star. He knew the poem didn’t make sense (as he later commented: “Ridiculous, the rain can’t drive the clouds.”), but his words pacified him.  More importantly, this poem was his reaction to his first brush with life-changing illness. It would make him into a poet and also drive him into medicine.

Within both the poem itself and also within the experience that triggered the poem, there is the idea of illness narrative.  Although WCW did not limit himself to writing about illness, he sensed the impact of illness on patients' lives as well as their families. By the mid-to-late 1980s, illness narratives had emerged as a valid perspective on the lives of chronically-ill and their families, and also as a clinical instrument for treatment planning.

             Nothing so concentrates experience and clarifies the central conditions of living as a serious illness. The study             of the process by which meaning is created in illness brings us into the everyday reality of individuals like ourselves,             who must deal with the exigent life circumstances created by suffering, disability, difficult loss, and the threat of             death.
            -Arthur Kleinman (1989).                
            (The Illness Narratives: Suffering, Healing, And The Human Condition.  Basic Books, p. xiii.)

It may well be a severe challenge to adhere to such a patient-centered approach in today's world of tough economics and too little time, but it is an essential ingredient of the health care my family most appreciates.  For more than a dozen years, my daughter, Millie Niss – poet, new media artist, advocate – lived as best she could with Behçet’s Disease, a life-threatening (although usually not fatal) rare autoimmune disease.  It strikes blood vessels anywhere in the body, triggering inflammation. There is little forewarning. This is an insidious disability that destroys predictability in daily living and complicates any hopes to plan for the future.

Behçet’s cost Millie a promising career in theoretical mathematics by age 21. She had obtained a math-physics baccalauréat with Honors in France  (a series of exams after lycée education, equivalent to 2 years of university coursework) before enrolling in Columbia University as an advanced student at 17.  She won a math award her freshman and was subsequently recruited by the National Security Agency.   Several of her early math papers and proofs were published before she was 20.  She spent summers in National Science Foundation programs.  Upon graduation magna cum laude from Columbia, she was offered full funding from Princeton, Brown, and Columbia for her doctoral studies in math.   She accepted Brown's offer, but accomplished little.  Behçet’s was claiming her future, though we didn't know that yet.  We did know that she was fatigued, had trouble thinking clearly, and was grief-stricken.

She suffered from skin outbreaks, fevers, sinus attacks, gastrointestinal problems, broken bones, joint pain, headaches, and severe depression for the next ten years.  During that decade, she was often frustrated by her inability to maintain a predictable level of health or energy. She grieved that her life was diverging further and further from her friends' experience.

While they were achieving independence and promising careers, she was becoming sicker and increasingly dependent upon family caregivers.  She was tormented by the lack any explanation for why she was – as she often said – failing at life.  Absent answers to her physical deterioration, she came to believe it must be psychiatric and spent years trying unsuccessfully to be “cured” of her psychological problems, only to find herself increasingly damaged by the drugs being used to resolve her depression.

As her mother and also as a practicing psychologist myself, I was devastated by her collapse.  I was puzzled as well.  While it was obvious that she was clinically depressed along with the grief of her actual losses, her emotional state was unlike any I had observed either personally or professionally.  I had counseled many people through chronic illness and terminal disease.  She appeared physically sick to me.

And yet, there were only mental health diagnoses.  The physical symptoms fit no pattern any doctor could discern for a decade.  By 2003, some of her physicians felt she had some sort of medical condition, but the diagnosis was not clear.  Lab results showed chronic and significant inflammation and documented long bouts of anemia in forms often seen with chronically ill patients.  She spiked fevers that lasted for months.  There were falls, broken bones, skin outbreaks, severe headaches, episodes of blurred vision, and fatigue.

The diagnosis of Behçet’s came in early 2006.  Despite the gravity of the diagnosis, Millie was relieved.  Now she knew which doctors she needed to see.  Now there were options to try to minimize flares.  Now she knew she did not have some refractory form of mental illness.

During those 15 years of uncertainty (1991-2006), Millie had established herself as a new media artist, often utilizing her math and computer knowledge and ability to develop multimedia installations.  She ran poetry workshops for mentally-ill people, served on the board of the Rhode Island chapter of the National Alliance on Mental Illness (NAMI), and trained to become an advocate.  She completed what she called “the fun part” of an MFA in Writing at Emerson College before running out of money and the ability to live independently.

Her poetry as well as her web art was published on a regular basis.  Beginning in 2001, she developed an alter ego, “Spork,” who lived in “Sporkworld” − a world of invalids surviving as best they could in a bewildering, often hostile, health care environment.  Her Sporkworld website became her voice of literary, political, and medical discourse.  I became her frequent collaborator both of necessity and for pleasure as she made the painful and permanent step back home in 2003.

Illness and the enforced isolation of impaired health were frequent themes in Millie's work.  Along with her essays, poems, international collaborations, and videos, Millie was deeply concerned with treatment of chronically-ill people and public health policies. Often she depicted her experiences in poetry or essays about the medical system as it was evolving through the 1990s and into the 21st century. 

She was relentless in her efforts to obtain the best possible care for herself. She was unforgiving of anyone in the health care system who saw her as a cluster of frustrating disorders and not as a person.  She wanted the positive trends celebrated when they happened.  She wanted the disrespect and the incompetence recognized for the damage they caused.

She carried a camera, notebooks, a hand-held computer, MP3 player/recorder and extra batteries with her wherever she went.  When disasters occurred, if she couldn't take photographs, she requested that I do so. No matter how awkward the circumstances.  She wanted to show what it is like to be sick, to be at the mercy of the nearest medical facility.  She often said that she wanted an autopsy because it would reveal Behçet’s damage that didn’t show up on blood tests or diagnostic images.  She hoped that finding damage in her body might help prevent similar damage in others.

She feared she would die prematurely as the result of a mistake.  And mistakes did happen.  Yet, as time went on, we did better and better at finding doctors who could help.  By the Spring of 2009, Millie was traveling regularly to Cleveland Clinic to consult an endocrinologist who was helping her with the Secondary Cushing's Disease she had developed from steroids prescribed for the Behçet’s and to Rochester to see her rheumatologist, and also a pain doctor and an eye doctor.  She had infusions of a drug used to treat inflammatory disorders at Strong Memorial Medical Center and used their ER and inpatient services as well.

Her primary care doctor close to our home in North Tonawanda, outside of Buffalo, collaborated with her specialists. The medical commuting was working well, and Millie was strong enough to take her web design to a new level and to present her work at a juried international digital arts conference in Buffalo, October 2009.  Her art was well-received. She was well enough for conferences, for new media submissions, for videos.

Instead, she contracted Swine Flu.  After several days of worsened breathing, she had to be hospitalized.  She was too sick to get to Rochester so she was hospitalized locally.  An hour after she arrived at the hospital, she went into respiratory arrest.

Millie spent the next four weeks intubated in the ICU except for one failed transfer to telemetry midway through the month.  She wanted photographs.  The hospital wouldn't allow them.  She wrote memos in notebooks, dozens of emails, and she completed a collaboration of photographs and animations, which was published during the third week of her hospitalization − much to the surprise of staff.

She wanted everything documented for later use, once she got back home.  To me, she wrote, “I want every word reported.”  Intubated, recovering from H1N1, and septic with MRSA, she developed a rapidly ascending paralysis on the 16th hospital day from an unknown cause and that left her paralyzed from the chest down.  Yet, she was awake and alert most of the time.

            [T]he hospital has a "no photos" rule which annoys me. I do not want
            photos of other patients (a privacy problem), I want photos of ME and
            all the machines etc.  I am a new media "artist" (I hesitate to claim to be
            an "artist" normally but I don't know how else to say it), and they are
            stopping me from making media...which is what I do...

Millie died on November 29, 2009, several days after writing this email.  She was 36 years old.  We ordered an autopsy.  When the report arrived four months later, I drove to Rochester where her rheumatologist had offered to interpret it for me.  He wanted a copy for himself as well and I agreed, knowing Millie would have wanted him to have it.

Millie's Behçet’s doctor had been surprised by her death.  Despite the complications of Cushing’s and her eye problems, he did not think Behçet’s would kill her. After reading the autopsy report, he was irate and expressed it so openly that I felt I needed to stay calm myself in case we ever needed to discuss the report again.

Millie died of an undiagnosed infection in a vertebra that eventually severed her spinal cord. It was an infection that could have been cured with antibiotics and removal of the infected bone. But Millie was on antibiotics only sporadically. The spine infection was not found until after she died.

Millie and I had had many “what-if” conversations. 

I had my marching orders.  First, I collected Millie's poetry for a publisher who had solicited a book from her (City Bird: Selected Poems 1991-2009. BlazeVox, 2010).  Second, I needed to finish what Millie embarked upon years earlier: to tell her story and use it to help others avoid her fate.

Putting Millie’s poetry collection together was often fun.  Telling Millie’s story in an effort to help others avoid her fate is more difficult.  This is illness narrative under painful circumstances. All hope for the patient’s survival is gone. What remains is the modest hope that Millie's work and Millie's life can help to preserve the lives of others. I had her photographs.  I had her writings.  Her library of critiques about health care and health care reform.  I had her full medical record and I had that autopsy report.

After meeting with Millie's rheumatologist, I contacted the NYS Department of Health.  DOH launched an investigation and found a nursing care violation for which the hospital agreed to a Plan of Correction.  But the hospital made a statement to the DOH investigator that is contradicted by the medical record.  This resulted in a second ongoing investigation.

In the meantime, I discovered that between January 1, 2005 and October 29, 2009, DOH issued 72 citations to the hospital where Millie died. Nine citations were issued in the four weeks preceding Millie's trip to the ER.

The information is public, but the web pages are about a year behind.

I am working on the piece that Millie wanted.  It examines what we knew and what we did not know about her care.  It shows the compassion of some, the insensitivity of others.  It shows Millie actively engaged in her own care.  Given the vent, her side of every conversation is preserved in writing, whether she is telling someone how to work the controls of her bed or asking about a nurse's children.

It shows that advocacy, even when both the patient and family member are experienced and trained, cannot save the patient if the mistakes are serious, or if they happen while the patient or the advocate are sleeping, or if the problem is not within the competence of caregivers.  Millie asked questions.  I asked questions. Doctors documented their questions.  But Millie lost her life when she likely could have survived.

It's not a problem for lawyers and courts to fix.  I now have the responsibility of conducting a study, using every gift of poetry, research technique, and wisdom that I can find in the hope that it will help others.  In the most literal sense, since this is my local hospital, the life I save may be my own.

 

 

 

About the Author

Published: August 30, 2011