Unlocking Locked-in Syndrome: An Interview Through an Empath

John Andrews is a 37 year old man with ALS who has been the subject of many of these columns. The course of the disease was swift, leaving him paralyzed within a few months and unable to speak within a year and a half.

John has led us to many different levels of healing over the course of his illness and through many realities beyond the boundaries of normal belief. Deprived of movement and all but the most basic communication, he has lived in the more subtle realities that most of us over-look. His experiences are actually common to all of us, but we are usually too focused in the mundane aspects of our existence to notice.

The common perception of others when a person's body has deteriorated to the point where movement and speech are impossible is that they surely have no reason to live. They are thought of as helpless,unable to express themselves as human or feel real emotions. John refutes this notion, saying that as a result of his spiritual growth, he is the happiest he has ever been. He claims to be more of a man now than he ever thought possible. In this interview, communicated telepathically to Victoria, he shares with us the richness of a world deprived of things we tend to think are important, things beyond the luxuries of speech and movement.

When asked if she thinks of herself as a psychic because of her ability to communicate empathically with John, Victoria laughs. She denies ever having believed she had such abilities and even now seeks the reassurance of the EMG needle that what she hears is coming from John. She believes that a person who takes the time to quiet themselves, is open, focused and aware can likely achieve the same sort of connection.

Carl believes that this subtle communication takes place routinely between all people, but acknowledges that the courage, self-assurance and unconditional love required to be open to such communication is beyond most people. Imagine what it would be like if everyone around you heard everything you think. One of our basic defenses is learning to shut-out other people's thoughts, emotions and intentions on a conscious level. We invite you to notice your own thoughts and ask yourself how they affect the world around you assuming everyone could hear them, because the truth is, at some level they can.

Carl: You've been unable to talk for over a year now. What was it like to suddenly be able to talk to someone?

John: It happened like this. Victoria wanted to be able to know when I was ready to die. I thought of the words, "peace, love, and forgiveness," because that's the way I felt about dying. She sat there with her eyes closed, holding my hand. A puzzled look came upon her face and she said, "Peace? Are you saying peace? Did you say love? Are you saying peace and love?" I indicated "yes" with the EMG needle. I felt like Helen Keller at the water pump. We were both stunned. She asked if there was more and I indicated "yes." She closed her eyes again, then said, "Are you saying forgiveness? Are you saying peace, love, and forgiveness is how you'll feel when you're dying?" She began to cry in awe and disbelief. I cried too, since at that moment I realized I could actually communicate with the outside world. The feelings I had were indescribable.

Carl: How do we know it is actually you speaking?

John: I would tell people to look in their hearts and believe what they feel.

Carl: You've lived what has to be many peoples' worst nightmare. What is it really like to be trapped in a body that won't respond in any way, unable to call out when you're afraid or when you need even the most basic things?

John: When I first became paralyzed, but could still talk, I worried about everything: Fire, going to the bathroom, eating, drinking, working -- just everything. I couldn't even imagine what it would be like to be unable to communicate. When my speech first became garbled, I remember telling Victoria, "It's over -- I can't talk." I couldn't imagine how I could live without being able to talk. I loved to talk. I loved to laugh. It seemed a fate worse than death. But like the discomforts in my physical body, I was able to adjust slowly. When I was unable to call for help, I had an alarm rigged to a headset. I had so much anxiety about being unable to activate the alarm, I was almost glad when I could no longer turn my head enough to use it. We then began to use eye blinks and a letter board that was painfully slow, imprecise and tiring. My team came up with the idea to use a biofeedback device attached to my neck using the same letter board. Eventually however, I lost the ability to trigger the device enough to spell out words. Fortunately, I still am usually able to signal a "yes" response.

I am a different man than I was at the start of my illness. I had many friends, but looking back, I was a brute. I always wanted my way or no way. This disease epitomizes helplessness. There is no way I could have prepared myself for this. I would still be in denial if it wasn't for Victoria. She helped me understand it was my soul that was my being. I was not only my work or things I acquired.

Carl: You say that you know you scare people. Tell us what it's like to have your friends afraid to look at you, afraid to be near you?

John: I made fun of people like me before I was sick and I know what they must think. I try not to take it personally, but naturally watching my visitors trail down to almost nothing was devastating. Perhaps that was the hardest thing of all. When we go out, the stares of people I don't know don't bother me so much. Generally people are very accommodating. At the beginning of my illness, I was the one comforting everyone. Carl was the only one who seemed strong enough to be able to comfort me.

Carl: What kind of emotions do you have without expression through the body?

John: It feels as if the energy in my body that is emotion, starts and stops, starts and stops without rhythmaticity. I feel the energy dam up in my body -- it is suffocating. It's like having a charley horse but being unable to shake your leg.

Carl: It's been said that for everything you lose you gain something else. Do you believe this is true, and if so, what have you lost and what have you gained in compensation?

John: The obvious answer is loss of the use of my body. I am like Ann Uumellmahay, the brain in a jar, in "The Man with Two Brains." At least she didn't have to worry about bedsores. Seriously, it was devastating to watch my body deteriorate; and then my voice. It was unbelievably painful.

I'm sure it's hard for the outside world to see how I've gained anything, nor would I have been able to believe it. However, I have been transformed. Like Christopher Reeve: People say, "How terrible that happened to him." It is terrible, but I can tell that in interviews he feels good about himself on the inside and I know now that is the most important thing. I feel good about myself on the inside. In traditional medicine, the importance of the mind-body connection is almost completely overlooked, at least in my experience. This is unfortunate, because the body cannot heal in a spiritual vacuum. Healing may require dying. Our society places too much emphasis on longevity when it's thesoul that's important and the soul lives on.

Carl: Past columns have been about the spiritual realms you have learned to travel in and the guides you have met. Is this stuff true, or is it just the imagination of the authors?

John: (Laughing) A year ago, I would have told the authors to go have another drink. I have experienced incredible terror and conversely, my greatest joys on these journeys. Without explanations, perhaps I would think they were horrifying nightmares and wonderful dreams, but they are too real.

I would also add that the journeys have been incredibly important to my spiritual growth. I was a non-believer, but I am now certain of the existence of God. All that love is, God is. How different that sounds to me now than when I heard it before my illness.

Carl: If this stuff has been true, how accurately has it been reported, and how do you explain this accuracy or inaccuracy, which ever the case may be?

John: The information in the columns was all verified with a "yes" response on the EMG. I do not understand the workings of the universe, I only know my own experience.

Carl: What would you most like the readers to know about these other realms?

John: Consult an expert to guide you. I grossly underestimated the power of the unknown.

Carl: In the column, "A Deal with the Devil," it talks about the Darkness. Is this for real? Are we to believe there actually is a devil?

John: I think it is semantics. I grew up believing in Heaven and Hell, but became an agnostic. Now I see the Darkness as a very real force that can ruin lives. People attribute it to coincidence, bad luck, bad parents, etc., but when clearing the Darkness causes the negative feelings to go away -- well, I just know it's had a major influence on my life.

I am unable to express the horror of the Darkness. I have collected relics from around the world that I have always loved, but I no longer see them as simple carvings from wood and stone. Some of them I know are products of the Darkness because I've seen them on my journeys. (Victoria: It was difficult for John to even discuss the Darkness without feeling it come back to him. Therefore, these discussions were limited.)

Carl: People think of you as helpless, unable to express yourself or connect in any meaningful way with others. Can you give examples from your experience that disputes this?

John: I always thought of myself as an artistic person. This was expressed through love of art, gourmet cooking, organic gardening, and collecting antiques. Being unable to enjoy these pleasures any longer was one of the greatest losses of my illness. However, through my illness, I discovered I could express my creativity through other people, in a way similar to putting suggestions in their minds. I realized I could do the latter, when I would send a message to a caregiver that I needed to be checked, wanted some music on, or needed them to turn off a talk show.

Victoria had a Christmas wreath that needed fresh eucalyptus and baby's breath. She felt she wasn't good at that kind of thing, and had hesitated starting the project. I saw her working on it in her apartment, through her eyes I guess, but it was as clear as if I was doing it. She came over beaming, so proud that she had effortlessly decorated this wreath and loved the results. She then looked at me with new awareness and said, "Were you there? Were you helping decorate that wreath? That's it, isn't it"! I was exhilarated. I realized at that moment that my creativity could be expressed through another. Who would believe that I would consider my life exciting, but no one could have felt more joy.

Another time, I had some crystals I wanted to suspend from the ceiling of my loft. Burt, our nurse, enthusiastically volunteered for the task. As he began to analyze the possibilities, I sent the image of our bird Montana's driftwood that sits on top of his cage. The next thing I knew, Burt was saying, "Is it OK if I use this driftwood to hang the crystals?" My energy body was jumping with joy. Not only could I influence the designer, I knew I could do this with someone other than Victoria.

I also know I can still have fun in the kitchen. Victoria hates to cook, but she beamed with delight when her cream soups, alfredo sauce, and pizza were culinary ecstasy. Incredibly, I'm able to taste her food as she does more than I'm able to taste it in my own mouth. I've also instilled the flavor of food into her senses. At Christmas, she said, Are you thinking of Chex Mix?" And another time, I made her so hungry for broiled shrimp, she had some at a restaurant the next day (it was delicious)!

Carl: What advice do you have for others who face locked-in syndrome?

John: I would say I'm sorry. I hope you have someone who loves you and you are able to be cared for in your home. Just one advocate who believes you are still you can influence others to treat you compassionately. I would say believe in yourself and a higher good. I feel my suffering has had meaning because of the spiritual and emotional growth I have gained.

Carl: What message do you have for the world?

John: I would say be kind to others. Having gone through this experience, I realize how much hate, anger, and destruction there is in the world. It really does begin at home -- doesn't that sound corny? But if everyone on Earth felt loved at home, there would be no need to destroy others with words and deeds.

Carl: What would you like your co-authors to know?

John: I want them to know I love them. My life would have been a living hell without them. I know that because of their work with me, they will be able to help many more people.

Words seem inadequate to express my appreciation to these two people who believed in me and my intrinsic worth. I gave them both reasons to abandon me, but they refused to give up. I love you guys. Good-bye.

Shortly after this interview, with a sense of urgency John dictated letters to loved ones through Victoria. His communication with her then diminished primarily to a "yes" or "no" she felt at a visceral level in response to questions. He was weakened by the latest health crises that threatened his life and we were preparing for his death. He had been hovering on the edge of a vortex that opened around him. Coinciding with his decreased communication, the vortex closed and John journeyed in spiritual realms similar to those reported in previous articles.

After several days of near silence, John dictated a letter through Carl to Victoria. She had been at John's bedside as close to 24 hours a day as she possibly could. She stayed close to comfort him and act as hisvoice, and wanted to be with him during his transition. In his letter, he said of his limited communication, "...it is because of my new understanding of what love really is that I must release you from the last vestiges of bondage I have imposed on you" (see Releasing Karmic Connections). In an act of unconditional love, John relinquished the communication link that freed him from locked-in syndrome. He sacrificed this most precious of gifts to finally free the only person with the courage to be open enough to listen to even his careless thoughts, ending over 2500 years of karmic patterning.

Written by John Andrews, Carl Brahe, MA and Victoria Hall, RN


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