My Time with Sickness, Death and the Dharma

My Time with Sickness, Death and the Dharma [1]

Recently I had a long bout of sickness which lasted for two months. I woke up one night to intense pain and sickness.

I did not realize it then, but this was to be the start of a long series of medical tests, of intense pain, confusion and bewilderment and ultimately understanding of what it is like if you are facing death. As my husband says, we went from first thinking I had a pain and pondering what was to be done to get me well, to living one day at a time wondering what lay around the corner. My GP had given me a referral for an ultrasound scan of the abdomen. I knew that all was probably not well because unlike the pain I had suffered in previous years which never lasted more than 20 minutes, this one had gone on for days. While getting the scan done, the sonographer told me that she had detected multiple gallstones and to make sure I got a follow-up appointment with my GP the very next day. Relieved I thought to myself that this was a simple matter and would probably involve key hole surgery and that I would be up and about soon after.

So, when I sat in my GP’s office the next day and was told that my pain may not have been due to the gallstones, I had trouble accepting it. The report on the scans were sitting on his desk and as he went through it with me he told me that changes to the liver and pancreas were also detected; that I had fatty liver disease and that we need to investigate this further. I was incredulous and for one moment wondered if my scans had been swapped for someone else’s, were it not for the fact that the sonographer had told me the previous day that she had observed gallstones which was also mentioned in this report. For some inexplicable reason my next reaction was embarrassment. A friend had told me years ago when she had been diagnosed with breast cancer, the first thing she felt was embarrassment. At that time, I thought to myself that it was a strange state of mind to have, yet here I was with the same experience. As humans we have such strong notions of our bodies, how they should look and expectations of their state to always remain the same. There is also a certain amount of pride attached to having a healthy body. I was now clinging to a previous state of health and well-being.

I could not fathom getting this condition when I had been so careful with my diet. When I tried to question my GP further, he tried to downplay everything and told me not to worry about the fatty liver disease, all that meant was if I had a fat belly, I should reduce it. It was then that anger arose in me, I felt an overwhelming urge to smack him because I thought I had detected a smirk on his face. I did not have a fat belly, surely he could see that. The gallstones were evident, so why did he not refer me to a surgeon instead of insisting on sending me to a gastroenterologist. But having studied dharma for many years, I was aware of the psychological states that one goes through when confronted with unexpected bad news so stopped myself from expressing my anger. Denial had already shown its face and now anger was setting in. I couldn’t let go of the idea of surgery to remove the gallstones because that meant I wouldn’t have to think about more sinister possibilities. In the end I agreed to see the gastroenterologist thinking that he would confirm my thoughts and prove the GP wrong. In the days before the appointment with the specialist, I read the report of the original scans and came across mention of a diffusely echogenic liver with a nodular surface. An unsettled feeling came over me. I was moody and easily irritated. I was afraid… I stood in front of my altar and prayed for none of this to become a wasted exercise, that I would at least learn to be courageous.

My visit to the gastroenterologist did not bring me the news I had hoped to hear. He believed there were different conditions going on inside which may or may not be related and persuaded me to have an endoscopy. He had told me straight to my face albeit very gently that according to the scans the liver was looking very bad. I remained quiet. To be honest, were it not for the impeccable bedside manners of the specialist, I probably would not have agreed to any of his tests. Having first done the blood tests, I had to wait two weeks before the endoscopy and the test results. It was necessary to treat the pain first and get me eating again. He believed the cause of my pain was acid reflux but needed to rule out a set of problems related to this. In the meantime, I had read as much as I could about liver diseases, I learnt that the term echogenicity of the liver means that the liver is enlarged. That the nodules on the surface could be benign yet could also be lethal if these grow into tumours of sufficient sizes as to put pressure on the liver or cause blockages of the bile ducts. The nodules could also be malignant. A heaviness of mind came over me. I started to worry about medical costs and how we could potentially eat into all our superannuation fund.

When my dad had cancer, he did not tell my mum for quite a long time and instead took me aside and told me what to do for her when he died. He never consulted her but made these decisions on the basis that what he was doing was in her best interest. I remember being appalled at his actions but now I found myself doing the exact same thing, arranging for a friend to help with cooking meals in the sincere wish to take away as much pressure off my husband as possible. All I achieved was to upset him. I had not consulted him and as a result caused him to feel left out of my care and disenfranchised. It was a difficult time for both of us. Best intentions seldom are effective if they are not born out of mindfulness. Geshela’s words in class about the importance of Mindfulness and Introspection rang loudly in my ears that evening. In the end my husband and I did get through the tension and I taught him how to cook.

I have been around dying people many times in my life, starting from a very early age, first by attending wakes of family friends, then my parents and other relatives. From my experience, sickness and death are very isolating for both the sick person and the carer, possibly even more so for the care giver. When one is sick, there is a tendency to retreat within and conserve energy and this often leads to shutting people out. I had asked to step down from my duties at the centre because I wasn’t sure how long I would need to get well or if I was going to get well but at the same time I did not want to cut off all ties, so chose to continue to maintain the fortnightly e-news. My husband had told me he would help if I became too ill to do it. Preparing the e-news meant engaging with the dharma. This was something I could still do from home and it gave me a sense of purpose. I rang Geshela up and told him what the scans had suggested and that I thought this could be very serious. I was fearful that I had stomach and possibly liver cancer because of the nodules that had been observed. I believed my karma was ripening now. Geshela in a most down-to-earth way explained to me that karma that has ripened cannot be stopped but its intensity could be reduced. With great compassion he told me that if there is cancer, it cannot be made to disappear by asking the Buddha to do this. However, one could dedicate for the doctors to have clarity and insight into the nature of the disease and come up with a treatment plan that could lengthen my life. Then very gently he reminded me that doctors and their machines do sometimes make mistakes in their diagnosis, hence the need to dedicate for their insight and clarity. He told me to do the breathing meditation and to recite both the White Tara and Medicine Buddha Mantra and that he himself would do pujas for me.

I spent ten days in intense pain. Each episode lasted for more than an hour during which my mind was completely overwhelmed. I was unable to think. I was unable to eat for four days and had a spoonful of food at each meal. On the fifth day I decided that not eating was actually making me feel worse and that I had to get something in me so that I would be able to withstand the tests and the sedation that came with them. My poor husband tried his best to cook me nutritious meals but I could not quell the nausea that rose at the smell of food. In the end I asked for Campbell’s canned chicken noodle soup which meant I could have very small quantities in between the bouts of pain. I tried my best to do my practice in whatever limited way I could while remembering to make the dedication according to Geshela’s instructions. But in time asking for the doctors to have clarity became less important and taking precedence was my dedication to meet with whatever health challenges with courage, grace and dignity.

I had spent several days bedridden, sometimes doing my practice in bed and sometimes in the garden. I found myself getting up later and later each morning because of spending all night wrestling with the pain. Depression was setting in. I could not help but think that the swift and sudden onset of the pain, paralysing my mind must be very similar to the sudden onset of death. Throughout my illness I watched the news and read the newspapers. There were always reports of people dying, a few from a long battle with disease but mostly people died suddenly, through accidents, violence and natural disasters. Not everyone has the privilege of having time to prepare for death. Mostly Death comes banging on the door unannounced sending the unprepared occupant behind the door scurrying in terror for a place to hide. I told myself to get up and reinstate my morning prostrations. There were alternative ways of doing them, even if I could not handle the physical prostrations. While my mind was moving constantly making it difficult to concentrate during formal practice, still there was merit in trying to bring it back to focus again and again. At first it was difficult to retain the visualization of the Buddha, but I found that when I placed Lama Zopa Rinpoche at the heart of the Buddha, I was able to keep my focus and I felt the tension knot at my heart loosening. My husband persuaded me to go walking in the park, to look at and listen to the sounds of life. It was slow going at first, I had to stop and rest every few hundred meters or so, but I was much lifted from the effort.

On the twelfth day I woke up to find the pain had subsided perceptibly. The double dose of medication the specialist had prescribed finally kicked in. On the day of the endoscopy, I was dead calm. I did my formal practices in the morning and was amazed at how sharp my mind was. I had noticed long ago that my best meditations always occurred when I was sitting in the dental chair. Terrified of looking at the instruments the dentist wielded, I would enter my inner world and place my mind on Tara, never moving it. This is the advantage of fear. You can harness it to achieve good concentration. Fear can be quite a motivating force. I now saw why the lamas spend so much time describing the sufferings of the lower realms in such detail. To help me overcome the impending fear of the endoscopy, I told myself that I could bring meaning to my presence at the day-surgery by praying for everyone else there for whatever procedures they were having and to wish the very best for them as well as the hospital staff. It was a long wait at the ward as there were many patients. I lay quietly in my cubicle and could hear new patients coming and talking about their conditions. I was not alone in any of this. Others were sicker. I wished them well. I reminded myself of the kindness of the doctors and nurses there and hoped one day I could repay their kindness.

I went in for the endoscopy and when it was over, was given a report which said that a few biopsies had been done, one of which was to test for Celiac disease. There was also a recommendation for a colonoscopy which the specialist was planning to discuss with me during my follow-up appointment with him. I went home and read up on Celiac Disease. It gave me hope that if this was Celiac Disease it would explain the damage to the liver and that by avoiding gluten the damage to the liver could be reversed. It made me feel buoyant again. Even the thought of a colonoscopy was less bothersome to me.

My husband took me to the shops to explore the health food section of the supermarket. He wanted to show me that there was life after Celiac Disease. We were on a high now and bought a few things from the supermarket.

At my follow-up appointment, the specialist cleared me of liver and stomach cancer and Celiac Disease. Now he explained the significance of the liver nodules in the scans. These are signs of liver cirrhosis. Yet oddly enough none of my extensive blood tests showed this. He sent me off to another place to get another set of scans to ascertain if cirrhosis was present or not. In addition to this he told me that my blood tests did show iron deficiency. As my diet did not seem to be the cause of this, he now had to eliminate bleeding in the bowel, hence the need for a colonoscopy. If the colon did not show evidence of bleeding then it was probably from a blood vessel in the small bowel which would be inaccessible. That would mean we would have to leave it alone. This was now rapidly turning into a Russian novel of epic proportions. I laughed to myself. I had very little interest in getting the repeat scans because by now I was resigned to the worse having read everything I could on liver cirrhosis and end stage liver failure. Towards the end, the body begins to process itself in a last effort to stay alive. My body as I know it to be will be completely wasted. It was not going to be a pleasant way to die. I did also read in one of the medical journals that it is possible to have cirrhosis and get a normal reading in the liver tests. I felt immensely sad that my husband would have to witness my deterioration.

I thought about all those times I had behaved badly towards other people, taking up extreme positions in defence of my views, “myself,” over remarks made about my appearance or self-worth. Many times I allowed jealousy and pride get the better of me. These all seemed immaterial now. I felt deep regret for the pain and hurt I had caused various people during the course of my life.

It was then that I remembered talking to John our centre director years ago when I was on the altar polishing the Buddha. I said that I could think of no better way or place to die than doing just that and there. I realized that I still had energy and now not hampered by pain I should do everything I could to exercise and eat well so I could return to the gompa as soon as possible.

The results of the colonoscopy I now know have not yielded anything. There was not a single polyp to be seen. My new scans contradict the findings of the original one. The expert concluded that there was no nodule present, that I had a mild case of fatty liver disease and multiple gallstones which were not showing problems. However, this scan picked up a kidney cyst which the original did not. The doctors have not commented on this and I am not pursuing it. It will remain as a reminder to me that death may not be knocking on the door right now, but he is lurking behind the bushes in the front garden.

In conclusion, I would like to say that I bear no ill will towards the doctors. Everyone was trying his best, even the expert who had incorrectly observed nodules on my liver. He stated what he believed he saw. The past two months haven’t been a waste of time. Because I believed I was going to die, it gave me an opportunity to meditate on death in a concrete manner without the safety net of first knowing how all of this would turn out.

Summary of the Methods that Ros Used to Cope with Pain and Suffering

  1. Discuss ‘bad news’, such as a bad diagnosis, with loved ones, instead of covering it up in order to protect them.
  2. Consult your spiritual teacher and follow their advice. Here’s two good bits of advice: when karma ripens, you can’t stop it, but you can reduce its intensity and after effects, and, dedicate any merit to your doctors that they may have great clarity and insight in their work.
  3. Intense pain can have a paralysing effect. If it continues, it’s easy to start spiralling down into depression. When this happens, try to keep up your spiritual practices, or restart them.
  4. Recall that cancer, like all phenomena, is empty of inherent existence. It does not exist permanently, independently from its own side. It is changing moment by moment. It arose from many causes and conditions that have come together at this time.
  5. Dedicate your pain and anxiety so that others with similar problems are purified and happy again.
  6. If death is imminent, go back to some simple spiritual practice that you really enjoy.
  7. Recognize and give thanks for the kindness of your friends and doctors.

[1] The contents of this article were extracted by Len Warren (2019) from Ros’s story entitled: My Time with Sickness, Death, and the Dharma.

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