Ventilator-Assisted Living©

Fall 1999, Vol. 13, No. 3


They Just Don't Get It

Ruth Celia Kahn

Neighbor: "How is Paul today?"
Me: "He's great, thank you."
Neighbor (shaking her head, sighing): "What can you do?"
Me: "You know, Paul and I have a very good life."
Neighbor: "He's so lucky to have you."
Me: "Well, I married a very wonderful man."
Neighbor: "Still, he's very lucky."

She didn't get it! Our neighbor and many of the other elders who live in this apartment building assume that my husband Paul and I lead a very difficult life -- just because Paul uses a PLV-100 ventilator and an Everest & Jennings electric wheelchair. ( Paul's disability is caused by centronuclear myopathy, a rare neuromuscular disease.) Our well-meaning neighbors do not understand that this wonderful technology does not merely enable Paul to exist; instead, it allows him the luxury to say, "I didn't get enough done today."

Just like our neighbors' children, grandchildren, and great-grandchildren, we lead an extremely varied and busy life. Paul, now 53, is writing the latest draft of a play that will be produced in Boston next year, working on several other scripts simultaneously, writing an article for New Mobility, and editing two newsletters -- Access Expressed!, published by VSA arts of Massachusetts, and Rehab Update for a research and training center at the New England Medical Center. (Paul does much of his writing using a Power Macintosh equipped with the PowerSecretary voice recognition system.) He also leads a support group for the Muscular Dystrophy Association of Massachusetts, helps to care for our four-year-old cat, Cairo, and manages his team of personal care attendants (PCAs). I am the president of Words & Deeds, a consulting business dedicated to promoting the arts and social change.

Our neighbors do not understand that our marriage is a wonderful collaboration of love, shared interests and activities, responsibilities, and the joys and pain of personal growth. Paul and I met in the early 1980s, when I was a college student looking for an internship. Paul gave me my first writing job, editing a newsletter for a Boston-based information and referral agency. Paul and many other activists in the independent living movement taught me about the abilities of people with disabilities. Immediately, I could relate to the struggle we all share to be fully ourselves. It soon became apparent that Paul and I also shared a love of Renoir paintings, Gilbert & Sullivan operettas, Ruth Brown's rhythm & blues, Bertolt Brecht plays, and the poetry of Yeats and Ginsberg.

Our relationship deepened, but Paul's body was fading away. At that time, Paul was using a face mask and pressure-controlled ventilator. His energy level was extremely low and a greater portion of his day was spent sleeping with the face mask and ventilator. His carbon dioxide levels rose to dangerous levels when he did not use the ventilator. We realized that we were not going to have much of a future if Paul's health did not improve, and soon.

After making the rounds of doctors who only looked at Paul's disability, and not the complete person, Paul finally found a pulmonary physician, Barry Make, MD, who was not about to let Paul out of the hospital until a solution was found. Paul was fortunate to find partners in his health care who were willing to work with him to find the best solution.

The day after the tracheotomy in 1987, I went into Paul's room and met a complete stranger. There, sitting in Paul's wheelchair was a younger-looking man with a healthy glow. I almost said, "Excuse me, I must have the wrong room," until a second look revealed that this man was Paul.

Thus, Paul became an "astronaut on earth," as he termed it, tethered by tubing to the ventilator. Over the next six weeks, Paul mastered talking and eating, and learned all about the circuitry, supplies, and routines that would accompany him home. And, before I knew it, I was suctioning Paul's trach, doing "trach care," and learning a new vocabulary which included such words as saline, drain sponges, water traps, low pressure alarms, and suction catheters. Finally, the hospital team realized that we knew practically as much as they did about how to care for Paul's new lifestyle. It was time to go home.

We were both scared as we left the hospital, armed with all the knowledge and supplies necessary to continue Paul's life. I respected Paul's anger and sense of loss, just as I enjoyed a thrilling sense of empowerment in learning how to "be" with Paul and his ventilators. Over the next year as we prepared for our wedding (on November 13, 1988 — a very lucky day for both of us), Paul trained his attendants in how to perform the new tasks associated with the ventilator and tracheostomy. Slowly, he began to trust in the reliability of the LP6 ventilator and began to use it with a sense of ease and gracefulness, learning to recognize all its noises. As for me, I have never slept better. The "whooshing" of the bedside ventilator reminds me of the sea, rocking me to sleep every night.

We have continued to adapt. About a year after the tracheotomy and several infections from the standard Shiley tube, Paul started using a customized Shiley tube that was longer and sat in a more comfortable place in the trachea. During the first two years with the trach, Paul could only talk during the inspiratory phase of the ventilator. Now, in the daytime there is no exhalation valve on the ventilator circuitry, and at night he uses a Passy-Muir valve. Both set-ups enable him to have fluent and continuous speech.

Last year, when Paul was informed that the LP6 ventilator was no longer being manufactured and maintained, he switched to the PLV-100 which he likes better because it is quieter. His general health is excellent, and his powerful immune system seems to keep him from getting most of the viruses and other illnesses carried by me, his attendants, and our friends. His PCAs, funded by Medicaid, are vital to Paul's independence. I assist with Paul's care as needed, but we both feel more autonomous with Paul having his own attendants.

These last 11 years have been the richest, most action-packed years of our lives. Our marriage is built on a solid foundation of reliable technology, mutual support, and lots of love. Together, we have watched each other grow personally and professionally. Together, we celebrate our lives with cherished friends. And together, we have survived threatened state and federal cutbacks in services for people with disabilities, a reorganization in the way PCAs are paid, and the attitudes of our neighbors who do not understand the power of wheelchairs and ventilators to transform and sustain a life.

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