A Dance With Dementia: How Spiritual Discipline Helps the Process of Losing Who We Are.

Via D. Patrick Miller
on Jul 27, 2015
get elephant's newsletter

14043017669_98317bc5f3_z

A common goal of contemporary spiritual disciplines is the surrender of ego, which often entails “giving up the past” and learning to “be here now.”

It’s an ideal of spiritual growth that may not be too frightening to consider in the contemplative environment of meditation—after which we can always go back to the ego’s daily business.

But for over 5 million sufferers of Alzheimer’s and other forms of progressive dementia, the loss of ego is not a matter of spiritual choice. As their memories and sense of self progressively fail, they have to deal with the real terror of giving up the self—and then perhaps find a spiritual perspective that helps them negotiate the process.

KelliwithKid

Kelli McGowan is a 52-year-old grandmother in Marin County, California, who was diagnosed three years ago with frontotemporal dementia (FTD), an aggressive degenerative disorder that she describes as “Alzheimer’s on steroids.”

Recently I talked to Kelli about how her illness has changed her life—and how her spiritual discipline, A Course in Miracles, is helping her comprehend and cope with such a profound challenge.

“I went from being very loving and living life to the max,” Kelli recalls, “to being apathetic and having no energy, to saying mean things, being aggressive and agitated. I went from being graceful to being clumsy, catching myself on fire and getting hurt while attempting simple tasks like making a cup of coffee. I went from being energetic to being flat. I went from being very productive and intelligent to being confused and disoriented. I went from being a high-fashion dresser to being someone who needed five or six attempts just to get leggings on, and then I needed help. I went from being deeply involved in the world to hardly leaving the house, because it’s hard to be out, or be in groups.”

Kelli feels that her discipline helped her with some of her initial behavior problems because “I’m reminded that minds are always connected… I’ve blurted out some very weird things, so when that happens, I try to be honest about it and clean it up immediately. I’ll call and say, ‘I don’t like the way I did that and I love you,’ instead of pretending that nothing happened. This is important because people with Alzheimer’s or dementia, and the people around them, can easily become afraid or exasperated, and want to pretend that certain things aren’t happening. So I try to be open and honest and navigate through all this with as much grace and dignity as I can, so that other people don’t have to feel uneasy or guilty.”

KelliwithHat

According to the Alzheimer’s Association, Alzheimer’s and other dementias will cost the US $226 billion in 2015, a cost that could rise as high as $1 trillion by 2050. It is the most expensive disease in America. While dementias are generally associated with the elderly, Alzheimer’s has been known to strike people in their thirties, and about 200,000 people with the diagnosis are under 65 (the figures are higher for FTD, which tends to strike even younger). About two-thirds of sufferers are women. Alzheimer’s is the sixth leading cause of death in the US, and the only cause among the top 10 that cannot be cured, prevented or slowed down.

There are some alternative approaches to dealing with dementias, among them yoga and qigong. “My balance is way off, so even beginner yoga is a big challenge for me,” Kelli reports. “I feel like I have sand bags on my arms and legs. I get stiff and have tremors. All this is a massive contrast to my life before the diagnosis, but I refuse to be a victim.” Kelli has been active in supporting national legislation to increase funding and research for Alzheimer’s.

Admitting there have been times when she’s wanted to give up, Kelli says her inner guidance enabled her to “take a deep look at all this, and I got the message that ‘this is here for you to love yourself when you’re not perfect.’ I’m using my situation for my awakening, and that means bringing light to all of it, even the idea of my life ending. I mean, we’re all facing this; it’s not personal. Everything has an expiration date. It’s my divine process to make this dance with dementia an adventure, and learn to love it. I can even laugh at some of my difficulties and behaviors because there’s some really funny stuff going on sometimes.”

“Years ago I promised to undo as much of my ego in this lifetime as I could, and guess what: This has been my best opportunity so far to get it done. I’m trying to use all of this as an opportunity to awaken. There’s absolutely nothing I can’t bring love to.”

Education and support for those specifically affected by FTD is available from the Association for Frontotemporal Degeneration.

 

Author: D. Patrick Miller

Editor: Evan Yerburgh

Photos: Flickr and Kelli McGowan

1,374 views

About D. Patrick Miller

D. Patrick Miller has been a seeker and researcher of spiritual wisdom for over two decades. He is the founder of Fearless Books and the author of a dozen books and over 100 magazine and online articles for such periodicals as Yoga Journal, The Sun, Columbia Journalism Review and San Francisco Chronicle. His research spans a wide variety of subjects, including A Course in Miracles, the Enneagram typology of personality, the I Ching, Jungian psychology, yoga, shamanism, cultism, spirituality in the workplace, psychic phenomena, altered states of consciousness, and advanced human capacities. He is the author of THE FORGIVENESS BOOK: Healing the Hurts We Don't Deserve (Hampton Roads, 2017), UNDERSTANDING A COURSE IN MIRACLES, and LIVING WITH MIRACLES: A Common Sense Guide to A Course in Miracles. He also provides other writers with editing, independent publishing assistance, and professional representation through Fearless Literary Services. Connect through Facebook.

Comments

4 Responses to “A Dance With Dementia: How Spiritual Discipline Helps the Process of Losing Who We Are.”

  1. mlynjohnson says:

    Bless you Kelli McGowan – you are a brave adventurer into terrifying territory. Loosing the mind, not losing the mind is the goal of so many spiritual seekers Watching your journey is such a lesson for me. Thank you for not hiding from the world, thank you for sharing your experience. I love you. – Thank you fearless Patrick Miller and Elephant Journal for this article.

  2. Lynette Pareglio Lafranchi says:

    Dearest Kelli ~
    Dearest Kelli ~My eyes are filled with tears of joy, love, gratitude….your Faith, Courage, Strength, discipline, honesty, ability to forgive…..you are truly an inspiration, a human being who is contributing so, so much to humanity, teaching others how we are all connected. that we come from LOVE and return to LOVE and God’s appointment awaits everyone. I love you dearly and I am so grateful for your love and teaching me to get back on course when I falter and stumble. And, you are helping multitudes of people who feel shame with this frightening dis-ease…wow and those who will be diagnosed today/tomorrow…., God’s strength shines through you..and, Congratulations on being published!!!!!
    With love & gratitude,
    forever and ever…..
    Lynette xoxo

  3. kelli says:

    thank you …i wish more would step up and talk so peeps dont have to suffer in isolation and fear.