The Inaccessible Path to Enlightenment

Illustration of Matt Barton

There are many paths to enlightenment. But for wheelchair users the path is often unpaved, with stairs and full of narrow-minded people. In my early experiences with Christianity, I was continually told that if I loved Jesus enough, I would walk again. He hoped that when he changed course toward Eastern religion, he would be closer to finding enlightenment. I then attended a silent Vipassana retreat in rural Canada.

Vipassana is the meditation that Buddha practiced after trying all other forms of bodily mortification and mind control and finding them inadequate to free him from the seemingly endless round of birth and death, pain and sadness. 10-day silent meditation retreats are offered around the world at no cost to participants.

My caregiver, Ruthie, was an experienced Vipassana practitioner. She had taken the 10-day course eight times and was very interested in helping me take my spiritual practice to the next level by attending a silent retreat.

the arrival

The first thing that greets Ruthie and me when we arrive at the retreat at 3 pm is a sign that says “Bear Gate” and a 10,000 volt electric fence around the perimeter of the retreat. Before we even settle in, the facilitators ask us to hand over our keys, wallets and phones. I am ridiculously suspicious and refuse. Ruthie laughs and says, “Why do you need to keep them? So we can sneak out in the middle of the night?

I smile and shake my head as I remember what Woodrow Wilson said: “Trust, but know where the exits are.” I live by this quote. I finally agree to put everything in my backpack. A commitment, because I can’t reach it there, but I know it’s close.

The facilitators map out the 10 days. Apart from a welcome dinner on the first night, there are only two meals a day, at 6:30 am and 11 am. Once the gong rings after the opening dinner, you are expected to maintain a “noble silence” at all times. Talking to Ruthie to direct my attention is the only exception. Every day there is a meditation at 4am, then a teaching, and then breakfast. After breakfast, a teaching, another meditation, then lunch and another teaching and meditation, then some free time, like a walking meditation. Then a final lesson and meditation, and the evening will conclude around 9:30 p.m.

Our first day concludes with our only dinner, lentils, followed by our first meditation and speech. Then we go to sleep. Except I can’t sleep because it’s like 20 degrees in our room. Thanks to my neuromuscular disease I have very limited mobility. The brain-muscle connection doesn’t work in my body; basically, in the body of an adult, in the muscles of the baby. Also, like most chair users who are primarily sedentary, I have poor circulation. I’m basically like a frail 80 year old who needs at least 75 degrees heat.

To make matters even more complicated, due to my limited mobility I can’t layer up to stay warm or I turn into the kid in the snowsuit in A christmas History: warm and sheltered, but without the ability to move the body.

Day 2

I wake up feeling nauseous. I’m holding a bag, ready to throw up. I don’t know at the time, but the lentil stew wasn’t fully cooked and everyone is sick. I say something to Ruthie about how sick I am. She tells me to talk to the teacher.

I approach the teacher, who is in line ahead of Ruthie and me. I tell him I’m very sick. She says that the first time she sat down she felt nauseous from her toes up. According to him, this is part of detoxification. “It’s good!” he says. “It means the process is working.

“By the way, Ruthie feels claustrophobic and that’s why we want her to sleep in another room,” he says. Did I mention that Ruthie informed me that she was pregnant the day before she started the retreat? “She will be close to her if you need her and we will find a way to communicate with her.” As an afterthought, she says, “Oh, and YOU are talking to her too much.”

This is where I start to lose my mind.

I am far from my familiar settings and surroundings, with no ability to go out on my own. When I am in my power chair or in my bedroom at home, I am independent and can manage myself. When I’m at home, I have everything ready so I can sleep alone. Traveling, I don’t have any of that. I sleep with a CPAP and use a hair dryer to keep warm. It’s loud and annoying to listen to.

My biggest fear is being a tremendous burden. Helping me all day, away from my family environment, would be a lot for any caregiver. It’s even worse because I worry about being a burden to a pregnant woman.

I recognize that the point is to bring out the most important fears in a place where you are learning a technique to transcend the attachment to suffering, but I get overloaded. Instead of collectively overcoming my fears, I turn to the emotion I’m most comfortable with: anger. I’m angry at Ruthie for not coming to me to tell me about her needs. I’m angry that I didn’t do more research on what the center would be like. I’m angry at myself for being in a situation where I’m faced with all the childhood baggage I had stored away. Instead of relying on a primary, exhausted, caregiving parent, I’ve created a community of friends and paid caregivers, so that any burden that comes with me is broken down so that no person or two can be crushed beneath it. Most of all, I’m angry because I’m disabled and I can’t just get in my car and go.

During meditation I am so angry that I imagine a bear eating the teacher so I can go home.

Days 3-5

The next night I sleep four hours. I survive the day but I pray a lot that night. We are not supposed to engage in any religious or spiritual practices outside of the Dharma, yet here I am praying: “God, give me grace, help me discover what is right. There was a lot of flow to get here, but now I can’t understand if this is difficult just to learn or if it’s difficult because I’m not where I should be.”

At one in the morning I call Ruthie because I can no longer sleep on the IKEA wooden pallet they call a bed. My sacroiliac joint is on fire, my ribs hurt, and my shoulders are up to my ears. I decide to sleep in the chair and ask Ruthie to transfer me. After an hour, I move to turn up the heat dial and lose my pillow, then my seat belt gets caught in the wheel. I don’t want to call Ruthie again because she’s exhausted and pregnant too. I’m awake in the dark and cold, going over my options in my head: Can I call the US consulate and tell them that I am a prisoner in Canada? Can I hit the gong and start chanting during the next sit-in to get kicked out? Can I call the police and tell them I’m a hostage? What is 911 in Canada?

Can I call the US consulate and tell them that I am a prisoner in Canada? Can I hit the gong and start singing during the next session to get kicked out?

Finally, I call Ruthie and say, “How many hours of sleep do you need, because we have to leave tomorrow?” I know her answer before she says it: “You have to talk to the teacher.” I don’t know how to answer. It’s 3 in the morning. Ruthie gives me the pillow back and I continue plotting my escape. In the morning my neck is so tired that I literally have to hold my head with my hand.

I go to the teacher. “I think I need to leave and I’m trying to tell Ruthie, but she doesn’t want to talk to me, could you tell her?” I say. “If I were an able-bodied person, I could just go, but I can’t and I need you to listen to me.” I admit I cried, something my father wouldn’t have approved of, but he was at my wits end…imprisoned…in Canada.

An hour later, Ruthie comes up to me and tells me that the teacher told her that we shouldn’t keep a noble silence between us and that she’s sorry if she doesn’t come across as compassionate about my needs. Turns out she never said she was claustrophobic but just that she wanted to read or check her phone and she didn’t want to take me out of my experience. She told the teacher that she was chatting too much by saying thank you, please, and God bless you, which, to her, was about me focusing on her and not the process.

Hearing this calms me down completely. Hogan’s Heroes-escape mode and together we came up with a way to try to make the bed softer with more pillows between the egg crates. My stomach still hurts, but I keep the toast and I’m given permission to take a nap and take ibuprofen.

Day 6

I get up and shower for the second time in six days. My tailbone hurts so much that I swear I must be sitting on something, but no. It’s official: it hurts everywhere. In bed, in my chair, there is no place of refuge. I calmly tell Ruthie, “I’m not here for myself. I would have left the night before last if I wasn’t disabled. I’m here because I don’t want to disappoint anyone and that’s the wrong reason. I’m the one who has to live with the knowledge that I didn’t complete this, and I’m okay with that. We are leaving.”

God have mercy, she agrees!

I want to leave immediately and I don’t expect any protest, because the day before the teacher said that if I had to go, I would go with his blessing. Instead, he says, “I’m going to tell you something that will be hard to hear. You are the way you are in that chair because of bad karma from past lives, and death is coming. We all fear death. If you don’t do this now, you will pass that karma on to your next life.”

I don’t cry or get angry. I smile and meet his eyes. “I honor the fact that that is YOUR belief system,” I say. “But that kind of dogma has been oppressing people with disabilities for centuries. We are told we are disabled because we or our parents are being punished, or because we sin or have bad karma. I believe that God created me as I am so that I can help my community know that they are not outcasts or sinners. You are a lovely soul and I appreciate that you want me to stay for my benefit. Maybe if I stayed I could transcend this physical pain, but I can’t get attached to that.”

“A lot of people leave and have the perspective that they should have stayed,” he says. “You are doing so well.” He asks me to stay the night and decide in the morning. I firmly tell him no, take some ibuprofen and go home.

Epilogue

Twenty years later I do not regret my choice. I’m not angry. I have a lot of gratitude for the experience. I consider it an awakening, not only of my soul but of my purpose. As The blues brothersI am on a mission from God to transcend attachment and ableism.


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