Ventilator-Assisted Living©

Winter 2003, Vol. 17, No. 4

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Presentation at Ninth International Noninvasive Ventilation Conference:
"From the ICU to Home, October 23-25, 2003, Orlando, Florida

Intimacy, Sexuality, and
Home Mechanical Ventilation:
Breathing Intimacy Into Our Lives©

Linda L. Bieniek, CEAP, with Bill Miller

©2003 Linda Bieniek, CEAP

As ventilator users, we have the right to experience the benefits of intimate relationships and meaningful ways to express our sexuality. According to Dr. Dean Ornish:

“Love and intimacy are among the most powerful healing factors in health and illness. ... but also in what often brings the most joy, value, and meaning to our lives.”

Dr. Ornish cites research to substantiate his claims in his book Love & Survival: The Scientific Basis for the Healing Power of Intimacy,

Since many human beings encounter difficulties in their search for intimacy, what will help us succeed in our pursuits? First and foremost, we must recognize that cultivating relationships is a process, and that we must want relationships that are meaningful, caring, and beneficial to our health. This process includes setting goals, developing the ability to make wise choices that can lead to healthful relationships, seeking opportunities to meet others who share similar interests and values, and learning from experiences. While these strategies will not guarantee success, they can lead to connections that enrich our lives.

The reality is that severe physical conditions can seriously limit individuals’ choices in life, including options for expressing intimacy and sexuality. In the documentary “Breathing Lessons,” ventilator user Mark O’Brien relays the loneliness that stemmed from being unable to move, depending on a ventilator to breathe, and living a poverty existence. Yet, one study of women showed that the severity of their disabilities was not an impediment in their development of intimate relationships. (Nosek et al) Their characteristics, identified later, are worth our attention.

As human beings, we constantly make choices about our lives. Ventilator users who depend on their machines to stay alive have made a choice — consciously or unconsciously — to live. Increasing numbers of individuals are choosing to use ventilators intermittently. They may be motivated by their desire to be able to work, increase their energy, participate in relationships, and/or avoid getting sick.

As ventilator users, we value the ability to breathe, a function that many human beings take for granted. What is important for us to realize is that we can choose to breathe intimacy into our lives. How?

Each time we take a step and seek connections that nourish us — physically, emotionally, or spiritually — we breathe intimacy into our lives. When we learn to distinguish behaviors that reflect healthy sexuality from those that are unhealthy, we breathe intimacy into our lives. When we make responsible decisions about our health, we breathe intimacy into our lives. Likewise, when we protect ourselves from others who are hurtful, disrespectful, or exploitive, we assert self-respect, a characteristic of intimacy towards oneself.

Self-acceptance is an essential aspect of positive self-esteem, another characteristic that enables individuals to sustain the ebbs and flows of relationships. When we encounter difficulties in relationships — as most people do — we must be willing to face them with compassion. Professional and self-help resources such as workshops, books, and psychotherapy offer a wide variety of creative approaches for strengthening self-esteem, body image, and relationship skills. (Bieniek)

By arranging for inclusion of a session on intimacy and sexuality at an international conference on home mechanical ventilation, the International Ventilator Users Network (IVUN) invites us to consider the impact of these issues on our lives. We also need the support of health professionals in addressing these sensitive issues within the appropriate boundaries of their services. Even offering a copy of an article of this nature can encourage other ventilator users to consider their own desires and dilemmas.

Each time we breathe intimacy into our lives, we contribute to our wholeness, health, and the quality of our relationships. Although research on intimacy and sexuality issues in the lives of ventilator users is amazingly absent, the following insights from studies of people with disabilities can empower us in our pursuit of health and happiness.

INTIMACY
INTIMACY is a deep emotional connection …
Levels of Intimacy
WITH SELF

We need to be intimate with ourselves before we can be intimate with others. (Remshaw) In other words, “I” needs to be present before a “we” can evolve. (Schwartz) How do we know when we have developed our identity? Relationship experts offer the following characteristics:

Professional resources such as counseling and psychotherapy are useful for strengthening our identities and learning strategies for responding effectively to life’s challenges. (Bieniek & Kennedy)

The greatest thing in the world is to know how to be yourself. –Michel de Montaigne

WITH OTHERS

What is most important for ventilator users and others to understand is that we can experience intimacy in many forms. Intimacy is much broader than a sexual relationship or being a spouse or partner in a committed relationship. Relationships between individuals who care about each other, share a common bond, and mutually support each other may qualify as intimate.

Mark Schwartz, Sc.D., Co-director of Masters & Johnson’s Clinic, describes a wide variety of intimate connections that we can share with others.

FORMS IN INTIMACY
SHARING ...
Recreational Intimacy Sharing experiences in fun, sports, recreation, hobbies
Aesthetic Intimacy Sharing experiences in beauty - music, nature, the arts, movies
Intellectual Intimacy Exchanging ideas and mutually respecting each other's intellect
Commitment Intimacy Working for a common cause, value, or effort
Work Intimacy Supporting each other in fulfilling tasks or responsibilities (raising a family, chores, etc.)
Communication Intimacy Expressing honest, sensitive feelings; offering constructive feedback
Crisis Intimacy Providing support during crisis; affirming creative problem-solving through life's difficulties
Emotional Intimacy Expressing intimate feelings and their meanings; revealing and respecting vulnerabilities
Creative Intimacy Contributing to each other's personal growth, being co-creators ("not reformers") of each other
Sexual Intimacy Sharing sensual-emotional closeness, physical affection, and sexual desires
Conflict Intimacy Negotiating ways of resolving problems, "fighting" fairly, facing differences together
Spiritual Intimacy Sharing values, philosophies, faith, religious experiences, approach to life
 
BETWEEN COUPLES

Healthy intimacy between individuals who are a couple or partners in a committed relationship — whether they are heterosexual, married, cohabitating, or homosexual — is characterized by the following criteria (Schwartz).

WITH A SPIRITUAL BEING or COMMUNITY

Spirituality represents our inner spirit manifested through our values, philosophies, approach to life, beliefs about the world, and religious affiliations and practices. The variety of references to a “spiritual being” varies within each religion and culture (e.g., God, Allah, Buddha, etc.). Feeling an intimate connection with a spiritual being can provide a deep source of emotional strength. Individuals with disabilities who participate in a religious congregation or spiritual community often meet caring people who offer various forms of support.

The spiritual life does not remove us from the world but leads us deeper in it. –Henri J.M. Nouwen

Faith is the strength by which a shattered world shall emerge into the light. –Helen Keller

Barriers to Intimacy

A variety of factors may contribute to intimacy problems. People with disabilities may act in non-loving ways towards themselves and/or others when they have experienced one or more of the following:

In order to experience pleasure and nurturance, we need to be aware of our body sensations and emotional reactions. Blocking out physical and emotional pain also can block out pleasurable feelings that are a source of energy. (Bruno) Depression and Post-Traumatic Stress Disorder are medical conditions that often reduce a person’s emotional, mental, and/or sexual energy. The use of medications, alcohol, or drugs may numb physical or emotional pain as well as pleasure. Since alcohol and many drugs are depressants, they also may reduce a ventilator user’s breathing capacity. (Maynard, Headley)

Untreated sexual abuse or exploitation often results in relationship and sexuality problems, depression, anxiety, or post-traumatic stress disorder. Studies report high rates of abuse among children with disabilities. (Olkin) In addition, Nosek and others found that even adults with disabilities are vulnerable to sexual exploitation from professionals and people they depend upon for assistance. (Nosek et al)

Individuals who experience behavior patterns that interfere with their health or relationships are encouraged to seek appropriate behavioral health treatment. Since the conditions cited above may affect a person’s breathing, functioning, and overall health, health professionals are responsible for recommending professional assistance to their patients when health-interfering symptoms appear. (Bieniek & Kennedy)

The healthy, the strong individual, is the one who asks for help when he needs it. Whether he has an abscess on his knee or in his soul. – Rona Barrett

CONTINUED ...

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