Spoiler alert… if you’ve not read or watched Frankenstein yet, stop reading now or forever hold your peace.


Mary Shelley’s brilliant novel, Frankenstein, is an absolute work of art. No one can deny this, but I love that even 207 years after it was written, you can find wisdom in these pages.  In the book. the character Henry Clerval, learns that his best friend William was murdered. William was also Frankenstein’s young brother and this is what Henry says to Frankenstein; “I can offer you no consolation, my friend. Your disaster is irreparable. What do you intend to do?” Saying something like this after a tragedy is honest and real. It is admitting that you and your empty words can really not change anything. Acknowledging that it is extremely unfair, that life sucks, and showing genuine concern is so much better than awful platitudes with which people often insult those who suffer.(BTW Mary Shelley was a mom who lost a child, does that surprise you?)


I know that most of the time, people don’t say things that make matters worse on purpose, but for heaven’s sake, we need to change the narrative! If we are capable of getting our tongues around different pronouns for people who identify as wolves, I am sure we can manage to stop saying: “Get well soon” when someone is literally dying of stage 4 pancreatic cancer, or  “If you use some turmeric, I’m sure your tumour will disappear”. Seriously, have you got proof of this or are you just wasting some of the very precious time this person has left on earth?


We have a guest named May who is in her early 70’s. A few weeks ago she fell in Woolies (no, not because she saw the price of one avocado) and was found bleeding profusely from a head wound. She was rushed to hospital and many many stitches later, was taken for an MRI to see if they could understand why she lost consciousness. (I wish this were a story of a puddle of oil on the floor, that she slipped, hurt herself, met a bulldog of an ambulance-chasing lawyer and sued Woolies for millions, but please be warned dear Reader, this story is much less exciting and even John Grisham couldn’t change it into a nail-biting court -saga). Despite the doctors investigating all sort of possibilities as to why May fell, the most unexpected thing happened: they found that she is riddled with cancer. Despite not ever having a cigarette in her life, she has advanced lung cancer. There were some treatments that could be tried, but none that would be easy and none that would offer a cure. May decided she did not want further intervention. She weighed up the pros and cons and decided to spend the time she has left with us, enjoying regular visits from her devoted husband, eating Quality Street chocolates and doing the Star’s crossword puzzle each morning like she always used to do. On almost a daily basis, May gets dizzy spells. She breaks out into a sweat, her blood pressure plummets and her eyes roll back. It is frightening for all concerned, but she recovers relatively quickly. It is the progression of the disease that will eventually stop her heart. She has come to terms with it but her children have not. Every time it happens while the family visits, the daughters cry and the son gets angry. Last week he came to me, demanding that the palliative care doctors do more MRI’s, and get a neurologist, cardiologist and oncologist on the team. He came into my office and insisted on an explanation as to why these episodes kept on happening. I got up and put my hands on his shoulders, I looked deep into his eyes and said, “Roger, this is the beginning of her end. It will not stop. It will get worse and more frequent. Your beautiful mom is dying.” I needed this to sink in. Roger was with us when the doctors told May that she is dying, and rapidly so. But Roger needed to be reminded of this awful truth as the doctor’s facts were getting blurred by all the people telling him that his mom will in fact get better, that everything will be fine, “focus on the bright side”, “hold on for a miracle”,  “everything works out in the end,” ‘”stop thinking about it, it is going to be fine”.


Sometimes we say the wrong thing, but other times we don’t say the things that need to be said. This morning there were 18 visitors to see another guest. This was going to be the final time the family would all gather under one roof. It is a wonderful celebration that they can all be together from all over the world. Most of them came back to South Africa as there was a wedding, and it was the first time many saw each other for over five years. They were all there for a very clear reason and yet, they were skirting around the issue that they specifically planned around on a Monday morning, in the middle of the month. It’s weird. One cannot pretend it is not.  It was not a random family reunion – it was a farewell. It was an opportunity to all be together and celebrate precious moments and relationships. It weighed heavy on them all. I could see this, but they were brave and trying desperately to not show their real feelings. One of the visitors was 98. Our patient is only 50. I wanted to kiss the dear old lady when she said that it is unfair that our guest of 50 is dying and she is not. At 98 she has had a full and wonderful life. Acknowledging that life is dreadfully unfair and broken makes these moments so much easier than pretending things are okay and manageable. Once these words were uttered people relaxed and they even managed to joke about the fact that the next reunion will be at the funeral.


I am crying my way through Rob Delaney’s achingly beautiful book called A Heart that works. This is his memoir of his journey with his son who had brain cancer. He was diagnosed when he was only eleven months old and died at age two and a half. It is brutally honest. He swears so much that you forget that it is profanity. He has no filter and he allows the reader right into his soul and shares how much he misses his little boy, how treacherous the journey was, how unfair it is that there is even a concept like “pediatric hospice” and how people infuriated him with what they said to him. People would compare the death of his baby from brain cancer to the death of a grandfather with the same prognosis or to a recovery of someone else from brain cancer. Comparison does not help. Telling someone who is hurting what happened to you or what happened to someone you know is not helpful. It’s diminishing their pain. Delaney said of all the things people said to him, the worst was: “Please let me know what we can do?” I’ve heard this countless times. It is a wonderful thing to say, (I have said it myself!) and 99% of people genuinely want you to tell them what to do, but the person who is suffering or hurting is already overwhelmed. To give them another task to complete by thinking of what you can do to “help” in a helpless situation is just plain mean. We’ve talked about this before in the blog. Just do it guys. Just show up without platitudes or empty questions. Just tell the truth.


Kate Bowler agrees with Delaney. When she interviewed him on her fabulous podcast Everything happens,  the two of them chatted with wickedly dark humour about how people with lovely intentions just actually pissed them off. Bowler says when she was diagnosed with stage 4 colon cancer it helped when people acknowledged that this awful thing had happened to her. Saying, “I am sorry this happened TO YOU” helped. Instead of hiding behind toxic positivity we should create a space of honesty which is a wonderful respite for people who are usually forced to hide that they are scared and angry.


There is this super cool, beautiful milk chocolate brown death doula named Aloa Arthur. She left her high-flying job as a lawyer because of depression. She knew her depression was so out of control that suicide was very much on the table. Of course, being in our western world the last thing she could admit was that she in fact did not have everything together and that she was actually not living her best life right now or ever felt like she would be, so she resigned and went on holiday in Cuba. There she befriended a fellow traveler in the process of dying that saved her life. (You didn’t see that coming hey?) Her new friend was dying of uterine cancer. She accepted it, but no one else that loved her did. She hated having this “secret life” where she was consumed by emotions that did not fit in to the narrative of “overcoming cancer”. She was not allowed to speak of her disease as people became uncomfortable and she certainly did not have anyone with whom she could discuss death . In this strange situation of forced silence, her new friend, Aloa, suddenly found her own voice. She became a death doula, and has never suffered from depression again… .despite working in an industry most would find terribly depressing.


We prevent those who are dying or sick from sharing what they really feel and want to say because our anxiety is out of control. We are unable to deal with their reality, so we’d rather talk about something else. Is it not more noble to try and shut off our own feelings so we can allow our beloved the space to feel all theirs? We are in this little ecology bubble anyway… the disease or illness or tragedy is affecting us all, so why not take away the shame of the patient when they admit that they are scared, that they don’t have the strength to keep fighting, that they don’t actually believe that everything is going to be okay? If we don’t acknowledge this, we are inflicting such loneliness on people and we will regret it terribly once that person dies. It is terrible that honesty is the very first casualty of disease, long before the illness kills the patient.

In the book; Illness metaphor, Susan Sontag says: “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kindom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” So sooner or later we are all going to be in this boat. As far as I understand it, no one has yet escaped death, so let’s get ourselves together and learn the vocab that surrounds this. Let’s accept death and dying.


A diagnosis or a journey towards end of life should not change what we are in each other’s lives, but we need to acknowledge that things are different, in just the same way as when an old friend has a baby, or gets divorced, or come out the closet. It is the same relationship, with the same people, but the circumstances change. Why is it that we think when someone dies we are expected to be the cheerleader that gaslights that things will be better, or pretends that something utterly awful didn’t happen? Be with people where they are that day. Somedays it is amazing, sometimes it is horrendously awful. Our cultural script is so limited that we can’t talk about death, or temptation, or fear honestly. We all have to pretend we are Instagram ready – always. I don’t get why we have to pretend everything is always possible. We all know it isn’t! Why are we telling our kids they can be anything they want to be. Dudes, let me tell you, they cannot be. Watch a few episodes of Idol and you will agree, not every donkey is a race horse.


I am by no means saying we need to be full of gloom and doom at all times. Let’s meet each other where we are. Some days May has wonderful healthy hours and she eats ice cream and we let her sit in the sun. On these days she is full of hope and tells me she is feeling so good, she is convinced she was misdiagnosed. Somedays are vile and she’ll be breathless and confused and will spend most of the day in bed. On these days she admits she is scared and laments that she wanted to one day be a great granny. We do not rob her of feeling all these feelings. If she wants to believe in miracles on some days, we let her. We’ve seen them. If she wants to share that she is scared to die, we allow her that emotion. We are scared too.


We are finite. Life is messy. Let’s cling to hope and wonders. Let’s acknowledge death. It is not a failure.