All she lost: My sister's battle with Lyme disease

'It's like they're screaming'
Sue was determined to deal with the progression of the disease — and especially the hyperacusis — on her own terms. She went on the Internet and did exhaustive research. She kept in contact with another sufferer of advanced Lyme who lived in New Jersey, comparing notes on their progressive symptoms. And she ping-ponged from specialist to specialist, desperate to find someone who could help, someone who believed her. She took to wearing ear-plugs, then sound-proof headphones. But it was akin to spitting in the ocean. It made no discernible difference.

“Sometimes,” she told me, “when people are talking to me, even if they’re whispering ... it’s like they’re screaming.”

My mother found her one day in her room, unresponsive and foam coming from her mouth. A long suicide note was tucked in a dresser drawer. She’d taken a bunch of pain pills from two prescription medications, but would live. When I arrived at the hospital my mother was outside stealing a cigarette, crying and ashen. When Sue came to, she was enraged that my mother had intervened. In the days after, an uncomfortable dynamic followed: Dawn and I were naturally supportive of my mother, and yet entirely empathetic to my sister’s situation. A common enemy soon emerged, however. Her doctors wanted her committed to the psychiatric ward.

We argued vehemently that she was not crazy. She was suffering from the advanced stages of a debilitating disease, and had left behind a reasoned, lucid note explaining her actions.

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We eventually got her home and struck a wary truce: we would redouble our efforts to help her navigate the maze of health-care providers in search of some relief, and she would simply not give up. She was sent to a therapist, and placed on medication for depression — something she had struggled with even before contracting Lyme disease.

In search of a quieter neighborhood without the noises that were agony for Sue, my mom reluctantly put the house up for sale — the one that held so many memories for all of us, and Sue tore herself away from the gardens she loved. They moved, and then moved again, finally settling in a 55 and older community that they thought offered the quiet my sister so desperately sought. The first day the landscapers came by with their torturous weed-wackers, it became clear there would be no silent refuge.

Asking to be made deaf
Sue came to a drastic, but, given the circumstances, reasonable conclusion: she wanted to be surgically deafened. My sister — the same one who turned me on to all manner of wonderful music, who liked nothing better than lying on the beach listening to the sounds of the waves and seagulls, for whom peals of laughter were a siren’s song — would rather go deaf than endure any more pain. Now all she had to do was find a doctor who would do it.

No doctor would. They either did not believe the extent of her pain, felt it was too drastic a measure, or cited the “do no harm” tenet of the Hippocratic oath.

The last time I saw my sister alive was on one of her good days, in the summer of 2005. I had driven out to Long Island on a Saturday, and we spent the day together. We took a drive, and she asked me what music I was listening to. She could barely stand listening to music anymore, but she still wanted to know what was out there. I played a few tracks for her at the softest volume possible, and she laid her head back and smiled. Later, we went for a swim and she cracked a few jokes about sharing a pool with a bunch of people 20 and 30 years her senior. Looking back, the day seems impossible. A mirage.

Courtesy of the Baiata family Sue Baiata in the late 1990s at a beach on Long Island, one of her favorite places.

Later that week, I called to see if it was OK to come out that weekend with my family. Sue was godmother to my oldest, Alexa, but had yet to meet my son Luke, who at the time was 3 months old. She wanted desperately to see him — and I to show him off — but she was fearful of the noise a crying baby would make. She urged me to come, and offered to leave the house in order to avoid the noise. I put the visit off again — a decision I regret to this day.

When my sister attempted suicide the second time, she was determined that there would be no intervention. Sue was up and dressed early that day in August, and told my mom she was going to the mall. She called later that day to say she had met a friend and would be home late, not to worry. Instead, she checked herself into a motel along a busy stretch of New York highway, affixed a bunch of morphine patches to her body, and lay down to die in an empty motel room. There was no note. I think, in Sue’s mind, her actions no longer required an explanation.

In the days following her death, my sister Dawn and I did our best to simultaneously deal with our grief and to support my mother, whose own grief had turned her near catatonic. The thought of never seeing Sue again, of never touching her or hearing the sound of her voice, was overwhelming. What was most painful for me was the knowledge that she would not be around to see my children grow. She’d never again get to spoil her goddaughter. And she had never met my son, Luke.

The day of her funeral, the visitation room was closed to all but immediate family just before her body was to be moved to the church. I walked in with Luke in my arms, and closed the door behind me. I placed his tiny hands in mine, and pressed them against my sister’s casket. “Sue, this is my beautiful boy, Luke,” I whispered.

“Luke, meet your wonderful Aunt Sue.”

I have a favorite picture I keep on my dresser of Sue with her arms wrapped around me on my wedding day. Her face is lit with undiluted joy. Joy for me. Joy for the moment. There are times still when my longing to have her back hurts as deeply as the day she left us. But mostly when I think of her now, I think of all the times, and all of the little ways she expressed that same unbridled passion for life.

My sister fought valiantly against a disease that had diminished the quality of that life to a level that was no longer acceptable to her. It never once diminished her spirit. Through it all, all she really wanted was relief to her pain, and for someone to believe her story.

John Baiata is a senior editor with NBC News.

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