Thursday, November 18, 2010

"Little Futures" and Our Spirituality: Thoughts on "the closet," "stigma," "terminal illness" and "Spirituality"

I wrote this article for a holistic publication (now defunct) called Enlightened Practice. The article is a continuation, if you want, of a previous blog I posted on Dying in Vein, a book by Kathy Seward MacKay, covering the tainted blood crisis, its warriors and heroes, touching so very candidly on sometimes taboo subjects like: the closet, stigma, terminal illness and many more.

Hope the read will inspire you as much as interviewing the authors and reading the book inspired me.

As always, thanks for visiting,

Alina Oswald
Author of Journeys Through Darkness


"Little Futures" and Our Spirituality
By Alina Oswald

Although we are not always aware of it, mundane events, natural calamities, or the illness of a loved one are constant reminders of our mortality. Some of us need this reminder in order to re-establish a connection with our spiritual side. In the process, many of us revisit our beliefs about life and afterlife, and discover the path to enlightenment.
    Many people living with terminal illnesses embrace their spiritual existence and its healing effects on their selves and bodies. This enlightening process doesn't happen overnight, especially when people are forced to live isolated, closeted lives when a wrong was done to them for the simple reason that they are sick.

But what is really "the closet," we may ask?
    Many of us may live in the closet without even realizing it. Take, for example, people who live with depression. They may seem like the happiest people on earth on the outside-to their co-workers, sometimes even to their closest friends and family members. Yet, when nobody is around, their smiles vanish, and, too many times, they are replaced by tears and feelings of fear and hopelessness, which is destructive for the soul and body.
    As varied as they come, all closets have the same purpose: to keep us isolated, hidden in the darkness of guilt and fear. But to come out of the closet is not as easy as it may seem. The closet can be a refuge for many of us, for example, patients who'd rather keep their illness a secret than to be harassed and persecuted because they are sick. Not fair, indeed, but cases are as numerous as they are varied.
    An example would be the AIDS closet. Too many patients are still afraid to come out, even to their closest friends, because of the ongoing AIDS stigma. Coming out can lead to loss-one's job, sometimes even one's family-to name just a few, and to finding out who the real friends are that stick around in times of need.
    The hemophiliac closet is another example. Even today, in the United States, hemophiliacs are persecuted, harassed, and run out of their homes and towns for the simple reason that they were born with a blood disorder-hemophilia. And many of them were infected with HIV from the very blood products that were supposed to save their lives.
    Especially when wrong is done to us, we need time to make peace with what has happened. During the healing process, we go through several stages-from anger and denial to acceptance and, finally, reaching out and reconciling with God. As a result, we become more aware of our spiritual existence and learn to integrate it into our everyday lives. In time, we start living fuller, more meaningful lives.
    But we don't have to live in pain or to experience loss or a devastating life-threatening disease to connect with our spirituality. Sometimes we have the opportunity to learn by example, from real-life stories and experiences.

How can we do that?

    For starters, we can offer ourselves the beautiful and inspiring gift of Dying In Vein, a collection of real-life stories of "the blood-supply crisis within the hemophilia community," as photographer Kathy Seward MacKay says in her artist's statement. Together with designer Kathy Bouchard, MacKay and writer, Stacy Milbouer, give a fresh voice to a community shaped by loss and pain, but also by hope that gives them strength.
    Dying In Vein is a product of love, of personal grieving and mourning. As MacKay shares her thoughts in her artist's statement, she uses her skills as a photographer "to show the pain and suffering of the victims and the families [and] to tell the story with candid, real-life moments, [. . .] to capture the fervent activism in this community, [and] to show the everyday life of infected hemophiliacs and their loved ones." As a writer, Milbouer's goal was to "give a voice to people whose faces reach out from the book-people who were affected by the crisis of tainted blood products-and capture the heart."
    Indeed, the characters of Dying In Vein and their stories do capture our hearts and teach us a lesson in surviving the pain and loss and in living a positive life. We learn about "the closet" and its effects on our lives through people like Robbie Johnson. Born and raised as a Christian, he felt more "akin to Jews who were persecuted and destroyed simply for being born Jews." Born a hemophiliac, Robbie Johnson was persecuted and run out of town not once, but twice, for being HIV-positive. He created a world of his own, surrounded by his music but, unfortunately, the harassment he was forced to live in eventually cost him his life.
    We also learn how to enjoy every moment of our "gift of time" from people like Jim Kerber. He is a software engineer who, despite his hemophilia, AIDS, hepatitis B and C, and an amputated leg, believes he is "the luckiest man alive." Despite the constant pain he lives in, Jim Kerber lives life to the fullest, surrounded by his family and making short-term plans, or "little futures," as he calls them. One of his "little futures" was to be present at his son's wedding . . . and his dream came true.
    Examples of warriors are various and numerous . . . of people who refused to let the constant pain of their illness prevent them from living. We'll find them all in the pages of Dying In Vein. People like Jim Kerber are great teachers. If we become aware of the invaluable lessons in life that they offer, we'll learn from their example. In the process, we can make our own "little futures" and see them come true . . . and become aware of our own spirituality.