The dark blessing of chronic illness

A guest article by Gen Samten Kelsang.

(Para leer este artículo en español utilice este link.)

It was Manjushri Centre in 1983. I had just moved in, and this was to be my first meeting with Geshe Kelsang Gyatso. I was 18 years old, fresh out of college, and trembling in earnest anticipation of meeting someone I believed would lead me to enlightenment. In that meeting he agreed to be my Spiritual Guide. In the following decades he became a father to me.

All my life I have suffered from epilepsy (drug-resistant). Also other neurological conditions — restless legs and ADHD. In the early days when I first met Geshe-la he gave me some treasured advice about how to approach epilepsy from a Dharma angle. I have never forgotten this, and would like to write about it now in the hope that it may help some people.

Geshe-la told me to regard my seizures as my teacher. This can be applied to any health conditions. I would now like to share what I have learnt from this priceless advice over the past 40 years.

Cultivate mental strength. Weakness is not an option.

I lived almost all of my life without hope of health. For a few short moments hope for a cure might arise, then it would swiftly be quenched. If you suffer from chronic illness you are probably intimately familiar with despair. Please turn to a deeper and true source of hope. You must. Your back is against the wall and you have no choice. Choose whatever it is in Buddha’s teachings that touches your heart. This is your source of hope. For me, it started out as emptiness but over several decades seemed to morph into compassion and bodhichitta. That becomes our true source of hope.

We cannot gain deep, experiential realization of our source of true hope through book-learning alone.

There is only one way — we have to suffer. We all have to suffer in order to develop the psychological depth to realize the liberating truth of Buddhadharma. You will be able to help people progress forward in their path of Dharma. You will lead people to the true happiness of liberation. And most importantly, you can protect people from suffering and pain, not just in this life but in life after life. Your illness and pain have spiritual meaning and purpose. Yes, I know how hard it can be, but it is your dark and painful blessing.

People whose minds are weak need hope from some worldly belief that their body of this life will get well again. Be strong. People need you.

Chronic illness cannot be argued with. In that psychological act of giving up there is great strength, if guided with wisdom. It makes you strong. But it is a strength the worldly cannot see. Standing up and trying to lead a normal life, whilst every atom of your disease wants you to give up. This battle gives you an immense yet hidden strength that most people cannot even perceive or comprehend.

Always remember emptiness during your daily activities

My advice on emptiness is threefold if we have chronic sickness:

1) Focus on the emptiness of your body
2) Focus on the emptiness of your self or ‘I’
3) Frequently recite The Heart Sutra

1) We need to meditate on the emptiness of our body because in emptiness there is no body. Therefore, there is no disease. During nights I have spent lying in bed unable to sleep due to the restlessness in my legs, meditating on the emptiness of my body has been a great soother. Emptiness and bodhichitta have been the only things that have helped.

2) We need to meditate on the emptiness of our self. Whether we have illness or not, we accumulate many painful memories around our sense of self. But illness strikes at the heart of one’s self-concept and inflicts a special sort of pain. It shapes you, creates you. We have to meditate on the emptiness of our self to discover the panacea of the peace of emptiness.

3) We need to recite and reflect on The Heart Sutra. This is one of the most powerful ways to improve our understanding of emptiness, yet so blessed, intuitive, and beyond my ability to explain.

We must remember emptiness during those dark times when we need it most. This occurs not in the meditation session, but during our daily activities. This is when help is needed most, when we can be pushed to the utmost, and when the world can seem darkest. Please remember emptiness at these times. We do not have a choice. We need to deepen our understanding of emptiness now, while we have the opportunity. Alternatively, we can put emptiness off to another day. We will probably die before that day. It is always ‘today’ when we die, and ‘tomorrow’ is the day we put spiritual practice off to. We do not have a choice.

If it were not for the suffering and pain I endured through illness, I would not think of emptiness so much. This is the first dark, painful blessing that disease gave me.

Abandon fear and embrace death. Become a traveler.

Epilepsy is pervaded by fear. Fear and I are old friends. Whenever I walk into a room, I immediately look around for the presence of any piece of furniture that may cause injury. Nowadays I do this automatically and unconsciously. It happens without me choosing to do it. Sharp corners, hard edges, hot space-heaters, glass, the list goes on. Even familiar rooms. Fear of injury has been with me since I was 5 years old. Over the past 50 years, fear multiplied as I became more aware of how seizures affect all the other worldly things I care about — where I live, what I do, how it affects my physical and cognitive health. How the medication I take to prevent my seizures is rotting my brain and inner organs away. How every seizure devastates my brain. Fear is a part of epilepsy. Now the fear is gradually reducing as I dwell on my mortality and consider that the only reason for being alive is to help others.

I no longer fear death. For the worldly, fear of death is really fear of loss. We fear losing our friends, losing the places we are familiar with, losing the reassuring facade of security. During a long, painful, or traumatic chronic illness one comes to know loss intimately. There may come a time when illness makes us lose so much that we no longer fear loss. At that time we lose fear of death.

However, I do fear rebirth. Geshe Potowa said: 

It is not death I fear so much as rebirth. 

Rebirth in samsara. Rebirth as an insect. Rebirth in hell. Lifetime after lifetime, endlessly. Yes, this I fear.

It is only the understanding of death that begins to resolve the fear. When you have looked death in the face several times, that grim teacher will finally reveal that fear of death is about fear of loss. The loss of everything one holds dear.

I regard myself as a traveler passing through this life, and from life to life. When illness is severe it begins to teach us that we are just passing through, we will die soon. Buddha said: 

The end of meeting is parting.

I try to help people as best I can whilst loving them unconditionally, and being willing to leave them behind to move on to the next life. You will leave behind everybody you know, even the people you love most. Please understand this. A traveler loves people unconditionally because they know they will leave them behind.

Epilepsy taught me how to understand people’s suffering. How to melt this cold, hard heart. Selfish people need to learn to combine their chronic illness (if they are lucky enough to have one) with Dharma. Otherwise that cold, hard heart will remain frozen in a perpetual state of selfishness.

Make compassion your main practice

People discover compassion in many different ways. Mine was through chronic sickness. Yours might be another way. Put in the simplest terms, compassion is the wish to protect people from pain and suffering. If you are severely ill, please make compassion your main practice. Without compassion we are lifeless and dead. Don’t run from the suffering of your illness. Turn around and look it in the eye. Look carefully. Look closely. Over time, instead of seeing our own pain we start to see others’ pain, others’ sickness, others’ tears, others’ loss. Their suffering becomes our suffering. In this way, our Buddha nature starts to grow. But not without pain.

Please practice compassion. It is the most powerful method to transform your painful illness into something good. You cannot be free from physical sickness. As long as you have a body, that will be your burden, your pain, your tears, and your misery. However, compassion awakens your heart. We realize illness is not about us — there are millions of people out there with worse. When compassion blesses our mind it does not remove our chronic condition, but it helps us realize that our suffering is insignificant. In that realization we discover a purpose to our suffering. We discover meaning.

There are so many people out there in chronic pain. If we don’t help each other, then who will? 

The value of friends

I consider myself blessed to have had the supportive friends and family I have. The degree of kindness and help I have received has been enormous and deeply moving.

Please understand. People with chronic illness are incredibly stoic and strong, but there is still one bitter pain that is so hard to bear. When people disbelieve or doubt you are struggling with chronic illness, this pierces the heart. It makes you secretive about your ailment, angry, depressed, and eventually bitter and cynical. Even a little understanding helps enormously.

This article may seem heavy. I may talk about death too much, or other hard subjects. But this is the reality of someone with chronic and serious sickness. These dark heavy thoughts are what they wake up to. They live with this reality every day. It is a hard burden to endure — a heavy burden and a lonely one. Sometimes, the health issues (physical or mental aspects) have been too strong for me to endure alone. My mind is strong, but sometimes even that has not been enough. This is when the dark blessing of chronic illness teaches the value of wise friends and caring family. I have only made it this far in life because of the people who were willing to help me during the difficult times. If any of these people are reading this article, thank you — I owe you everything.

Even a little understanding from trusted friends is a ray of sunshine that can penetrate through the dark and ominous clouds of the heaviest painful thoughts that accompany sickness. Understanding from a sympathetic and knowledgeable friend helps bring back mental fortitude that was waning. When people show understanding, it brings hope and optimism into the suffering mind. And a will to live returns. We think understanding is just about knowledge. But understanding is also about love, and caring, and acceptance, and empathy. It is these qualities that gives our ability to understand sickness the power to start the healing process.

Over the past 40 or 50 years I have sometimes let a friend down. Maybe I didn’t consider that friend important enough, or maybe I was trying to follow the path of expediency. I now understand with crystal clarity that I would be dead if not for my friends. Friendship becomes something rare and sacred for anyone with chronic disease. It has become sacred to me. I will never harm a friend. Ever.

The only way to realistically commit to this ideal is to cultivate equanimity. This means cultivating a caring heart that is free from fickle and partial states of mind, and that embraces everyone with warmth and friendliness. This also comes from the dark and painful blessing of chronic illness.

The spiritual meaning and purpose of our life

I used to believe I was a meditator, a yogi. I have come to realize that I am not. My purpose in this life is not so much to meditate as to teach. It is teaching Dharma that gives me meaning and (I believe) maintains my life. I cannot explain how this happened but it is the dark and painful blessings of chronic illness that revealed to me what my vocation is and what it is not. At least in this lifetime. As long as there is purpose and meaning to my life, and vocation, then there is value in my living. Protecting other people from their suffering through helping them realize emptiness is the only reason I have for living. It is the only reason for me to have the privilege of being alive and drawing another breath.

We will have different conditions. Maybe bedbound, or exhausted with chronic fatigue, or tormented with extreme fibromyalgia. It may feel that we have nothing to lose because we have already lost everything. This is a good feeling and we must cultivate it. Having lost everything, we are free to be a Bodhisattva. 

Why do people practice Dharma for years with no real change? Because Buddhadharma is frightening to our selfishness and ego-grasping. Buddha’s teachings demand change, and our foolish, petty, selfish, egocentric mind is terrified of change. But when the dark, painful, blessings of chronic illness takes away everything, there is nothing left to lose. On a material level we may still have things. But psychologically everything is gone. Empty. Nothing. Then we can start to be the person Buddha wants us to be. A Bodhisattva.

Our only job is to protect others from suffering and pain. If we are very sick we need to be radical. Be more extreme than normal people. Give up selfish behaviors and ways of thinking. You have already lost everything anyway, and have nothing of worldly worth left to lose. Become a Bodhisattva and learn the 6 perfections. Hard times and illness — this alone is what makes life worthwhile. The world needs Bodhisattvas. The world needs us. You are strong, like a superhero. Please do not allow your sickness to simply strengthen your samsara or make you feel weak. We must become Bodhisattvas. There is no choice. People need us. 

When we become Bodhisattvas, we are inspired to make solemn and sacred vows about how we will benefit others when we become enlightened. For example, the 35 Confession Buddhas or 7 Medicine Buddhas have different and distinctive powers. I am far from being a Bodhisattva but I make this promise now: When I become a Buddha I will free those with neurological illnesses from their pain. This is not a sentiment, it is a promise.

We are Mahayana Buddhists. Soon we will die and lose our opportunity to develop bodhichitta. We need to understand others’ suffering now. We need to understand others’ sickness now. There is no time to wait. This is my message.