I Feel Healthy! I Feel Happy! I Feel Terrific!
Redefine your positivity mantra to better suit you.
The change began with a menacing dream the night of the 11th:
There are two women and a man.
One of the women has a very domineering presence and is insisting, is forcing the other woman to get impregnated by the man.
I’m standing between the two women, between the bully and the frightened woman, and scream — NO!!!
Then, not dreaming, I found myself on the floor of my bedroom covered with blood, so much blood that my husband wrapped me in towels and rushed me to the hospital.
Evidently, while dreaming, I physically waved my arms to protect the frightened woman, and flung myself to the bedroom floor with such force that I broke my nose.
Two weeks later, another dream:
Am waiting for a friend at a school bus stop. He’s supposed to drive the bus. He’s late. The bus begins to move. There is no driver.
I woke up screaming!
There was a distinctive quality to the dreams. A vividness and a pervasiveness. A visceral, oozing terror. From my years of meditating and studying dharma, I had started to become familiar with the terrain of my mind. These dreams alerted me that the terrain of my mind had changed dramatically.
I needed help.
First, I met with a neurologist, and after a series of tests, I was given the diagnosis of Rapid Eye Movement Sleep Behavior Disorder. According to DSM-5 (edited):
“Rapid Eye Movement Sleep Behavior Disorder (RBD) is described as a parasomnia, or excessive motor activity during dreaming. The sufferer acts out their dreams and perhaps causes injury to themselves or a bed partner. Behaviors may manifest once or more during sleep and occur along a continuum of mild (muscle twitching) to severe (reaching, grabbing, and complex motor behaviors). It is thought that the latter are reactions to events that are occurring in the RBD patient’s dream state. The disorder is rare; occurring in only 0.5 percent of the population. There is no exact cause of this disorder.”
There was more:
“REM Sleep Behavior Disorder may be associated with other degenerative neurological conditions, such as Lewy body dementia, Parkinson’s disease, or multiple system atrophy.
It’s been confirmed that 30 percent of individuals with RBD developed a Parkinsonian disorder or dementia within three years, and 66 percent did so within 7.5 years.”
Okay! It’s helpful to have a diagnosis, to be able to name it. But what was I supposed to do about it?
My imagination became flooded with uncertainty and fear. I shuddered and panicked with images of mental decline and loss of control over basic bodily functions. decline and loss of control over basic bodily functions. What’s going to happen? How am I to live with this? I had no idea. What ideas I did have only made it worse.
I’m a Buddhist, and a serious practitioner—the dharma name I was given is Discipline Warrior. I couldn’t help but ponder how I might make use of this phenomenon occurring in my mind as I continued to practice dharma. For example, I’d often heard it said that it is helpful to observe how your mind is during a dream because doing so will familiarize the perception of the illusory nature of our minds. In dream states we can learn and practice letting go of grasping and instead remain open and curious when meditating as well as when encountering the dynamism of the bardo states, while dying. So perhaps my sleep disorder was a preparation life lines for death, teaching me to be a fearless warrior during the bardos?
Honestly, such pondering didn’t help. What happened instead is that the anxiety of not knowing what to expect became overwhelming.
More dreams occurred over the next couple of weeks. Here’s one:
I’m on retreat holding a bunch of handouts. They are out of order and need to be organized if they are to be useful. Am sitting in a chair in the back of the mediation hall and am unable to see or hear my teacher.
A man with menacing behavior is standing nearby.
Then I realize my sister’s house is next to the retreat center. Her house is surrounded by a fence. It feels separate and private. There’s a growing anxiety that I can’t reach her.
My frustration gains momentum, combining the disorder of the handouts, not being able to see or hear my teacher, the menacing presence of the man, and not being able to reach my sister.
I woke up trembling.
Given my heightened fear and anxiety, it was suggested I go for a more in-depth sleep test to get more information. I readily agreed.
At the sleep lab, I was hooked up to no less than 40 cables and nodes. Wired and tired, I went to sleep—and conveniently had a dream:
I’ve finished the sleep test and there are two men in the room dismantling all the wires. It’s 4:30 in the morning. I have my phone and want to call my husband to wake him up to come and get me.
My phone is on, but I can’t find the familiar green icon of the phone receiver on the screen. Instead of one, there are three different green phone icons.
That throws me into great confusion and frustration.
I notice another woman in the sleep lab. I want to ask her to help me, but she’s busy; her friends are with her.
My anxiety to reach my husband grows. The anxiety begins to morph into fear. The fear begins to expand.
The technician managing the sleep test was so alarmed by the level of anxiety registering on the machines that she woke me up. Diagnosis confirmed. Now what?
I reached out to a long-time sangha friend, a medical doctor trained in both western and Tibetan medicine. She immediately sent me a series of herbs, with instructions.
She also introduced me to another process of working with dreams. First, I was to make a conscious distinction between when I was dreaming and when I was not; to ask throughout the day, “Am I dreaming or awake? How do I know when I am dreaming?”
She then introduced me to the process of retelling dreams. Twice a day I select a dream to bring to my conscious mind. While invoking the power of kindness and compassion, I retell the dream without the menacing force. So, rather than ruminate on dreams drenched in terror, I revise the narrative to dispel the fear and concentrate on that. It has proven to be an effective tool!
Still, dreams came:
I am in a large hall where everyone is doing dance yoga. I lift my leg to do a ballet move I’m very familiar with from my years as a dancer called a rond de jambe…
And I was suddenly awakened by the crash of my leg slamming against the window blinds.
It was 5:30 a.m.
Nevertheless, I was encouraged by the process of re-narrating the dreams and sought a Jungian therapist. While educating me about the language and dynamics of dreams, the therapist also suggested I keep a journal in the thick of it. The entries emerged scrawled like graffiti.
“My nerves are raw, feels like nerve endings are standing up! The wild roller coaster ride of REM Sleep Behavior Disorder. Will I have a good sleep???? Does terror await me!??!?! Sleep behavior disorder, it’s a roller coaster. Getting ready to sleep is standing on the outside before taking the deep dive into the unconscious.
Nagging fear and uncertainty persist.
I am grateful for my dream team, for my loving family and friends, doctor and therapist, teacher and sangha, but the truth is I’m scared shitless. I’m scared that I will or already have Parkinson’s or Lewy body dementia—that I’ll get more panic attacks and my mind will degenerate.
I’m scared each night before getting into bed, afraid of what could happen; more broken bones!??!
And I’m scared of the terrifying dreams and their menacing atmosphere; the frightening chases, the bullying, the fights with guns pointed at me.
The truth is I’m afraid each day, am terrorized by the thought the disease will outrace me as I lose my mind—lose my marbles, my cognition, and all control. That I’ll be alone in the shell of a disease, with no oxygen and no breath; no space, no place—just isolated and demented alone in a world of my own panic.
I don’t know what’s going to happen, what I can expect, and that uncertainty is terrifying.”
Finally, I get to tell my teacher, Phakchok Rinpoche, of the diagnosis.
His response: “Consider this a blessing.”
My first reaction: “That’s crazy!”
My second reaction: “@!*?”?!**#*@*!??!”
Over the ensuing weeks, as the wave of agitation passes, my mind naturally opened: What could he mean that I should consider this illness a blessing? That was when my orientation to the dharma and my practice changed.
Here’s what I did:
Since having a safe space to sleep was critical, my husband and I have dream-proofed the bedroom. I’ve also altered my lifestyle to limit travel only to places where I have control over my sleep environment.
I’ve put together my Dream Team: Tibetan and western doctors, my Jungian therapist, family, friends, sangha members, writing groups, and my teacher.
To monitor any progression of the condition, I’ve joined a five-year research project at Harvard and Massachusetts General Hospital with the hopes that the research may produce insights and treatments for living with the condition. Considering that the prevalence of neurodegenerative disorders, including Parkinson’s disease, is increasing, and the number of cases of dementia in the developed world is projected to rise from 13.5 million in 2000 to 21.2 million in 2025, and to 36.7 million in 2050, finding the causes, treatments, and cures for these diseases is crucial. This study will hopefully be able to contribute some concrete insights.
While I already had a regular and disciplined practice, dharma practice is now the organizing principle of my life. Here’s my new normal:
Taking refuge in the Three Jewels of Buddhism—one’s own enlightened nature in Buddha, the dharma teachings, and the sangha community of practitioners—has a heightened meaning.
It’s a blessing.
My meditation practice has increased to multiple times a day, with increased discipline, diligence, and devotion.
It’s a blessing.
Practice now includes a purification sang (incense) practice to remove obstacles; to call in the protectors and beneficent deities; to focus on any karmic debts; and to cleanse them.
It’s a blessing.
Gratitude practice is now part of my daily meditation. I thank my Dream Team for their support, guidance, love, wisdom, and friendship.
It’s a blessing.
I acknowledge that I’m often anxious before sleep, worried about what could happen. So I perform a ritual each night where I raise a candle in each corner of the room and ask for a restorative, healthy, and safe sleep.
It’s a blessing.
Tara practice has opened to me. Knowing that the fierce, feminine power in each of her 21 manifestations is ready to leap to my aid at any moment is a constant comfort as I meditate to steady my mind.
It’s a blessing.
My teacher’s basic instruction:
Body on the cushion.
Mind in the body.
Mind at rest.
It’s always available whether I’m outside by the lake; at my home altar; or with sangha members. Having the REM Sleep Behavior Disorder diagnosis has focused my mind, realigned my priorities, and dissolved distractions—putting dharma practice foremost in my life more than ever.
It’s a blessing.
I am learning to be more sensitive and patient with my new frailty and vulnerabilities, and to respond to them with love and compassion toward myself. This reveals new depths of Bodhicitta, the awakened heart and mind, with increased kindness and compassion to bring to others.
It’s a blessing.
Blessings are those tiny seeds of Buddha nature that purify obstacles, improve devotion, and clear the mind; a gentle sprinkle that ripens Buddha nature. You never know when and how they will find you. What I do know now is that learning to live with REM Sleep Behavior Disorder has deepened my dedication, devotion, enthusiasm, and gratitude for my practice.
But is the disorder a blessing? I’ll get back to you on that!
Andrea Sherman and Marsha Weiner are expert at creating loving rituals and practices for aging. For a sample, read “When It’s Time for Dad to Give up the Keys."
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