36 years of James in 29 minutes.
Magical thinking- denotes the belief that one’s thoughts by themselves can bring about effects in the world or that thinking something corresponds with doing it.
I’m not very good at giving advice, this is what I go to others for. But when writing this blog It has been what comes up more and more in the private messages I recieve.
I try to give it but I’m not always sure it helps. The truth is that there is a legacy to any trauma or pain. For me it is extensions of problems before. Before I would have thought nothing of turning up to a bar or party by myself but I could never do it now. I still struggle with large groups and I do try to stick to ‘Safe people’. I’ve even got into trouble for this, for choosing to sit by my friend Marianna once in a large gathering because she was my safe person. I still need levels of patience that not everyone is able to give. I’m not great with new people, but I’m improving here too.
This legacy affects my children too. But with them it manifests itself in other ways. Flynn particularly can’t really handle it when I am ill and once I was heavily sedated by my dentist, he got very upset indeed.
If I leave them for a night out or a few days away, there is often a whole process that needs to come into play. They can become anxious, perhaps worried that another parent may just not come back. So if I go away for more than a night I leave them messages under their pillows each night (much as their father did for me). They are allowed to phone or text whenever they want. I show them beforehand exactly where I am going on a map, photos of the place. How long it will take to get there and then come back. The exact timing of everything, and sometimes I see them relax. This has it drawbacks too as once on a romantic night out in a hotel farmhouse with a dashing young writer, I spent the whole main course at the front-of -house, on the receptionist’s phone trying to quietly sing: “I have naughty monkey in my car, Lesty Loo Loo….” down the public phone to gawks from some pretty hostile (but very well dressed and trendy) onlookers. Thankfully he was still there when I got back.
A note to the grieving- advice, maybe.
I wrote a blog post once called -What To do.
People said – I just can’t imagine, which was mildly irritating. In the first week there were moments when I would randomly and spontaneously need to throw up where the grief actually made me vomit. There are probably few words words that could immediately bring on this reaction. But if you can imagine what words would bring this reaction on in you personally, then you’re there. There were times where I felt that I couldn’t handle the pain for one more minute let alone an hour. I couldn’t see a way through. Partly because there wasn’t a way through- It’s a bit like Celeste’s favourite book- Going On A Bear Hunt- you can’t go over it, you can’t go under it, you have to go through it. The gigantic swishy swashy grass, the splishy sploshy river and the thick oozy, squelchy mud
Regardless of how many people are downstairs in your kitchen or cooking in your kitchen, regardless of how long they stay, you are in this alone and that is by far one of the worst things, but something that needs to be addressed and most importantly accepted. Nobody can join you in your mind, or walk beside you in your dreams that night or totally and truly imagine what it is like, although the good ones will try.
So what to do- Initially and immediately it may be enough for a momentary release to remove yourself from the room you are in while experiencing a particular tough pang of pain. You will do anything to get out of the moment, your head, so try to do just that. It’s a band-aid and it will work only for a moment but that’s good enough as far as I’m concerned. So in the initial days this may be as simple as moving out of one room into the next, because what happens is you engage your brain in the navigation of this and so as it’s busy doing this, you will get a brief release from what it was occupied with in the previous room.
Sometimes going outside is good, especially in warm weather, this can have much the same effect. Doing a practical task can help, as simple as making a coffee or lighting a fire. If you want to escape your head then you need to give the brain something else to do. As days become weeks you will become more ambitious with these things, even extend them. You may even look forward to a meal with the friends in your living room, or a long bath or walking by the river or watching a film. As weeks become months these change even more dramatically. And then you remember day one. Nothing is ever as awful as day one, day two is almost as awful but it’s still not.
This next step is called living. This takes awhile and it will catch you up and pinch you on the backside even if you think you’ve banished it. If you want this process sped up further and you’re brave, then try acceptance on for size. I wasted, years really, refusing to accept that this was happening to me, denial is a river in Egypt , my dad used to say. Denial is not your friend and nor is guilt. Survivors’ guilt is the thief of joy. I fought all of this initially. I bought the same food, cooked the same meals, did everything the same but this was trying to prolong and extend something that had truly gone and truly ended. Only when I accepted this, was I truly liberated. It’s sometimes a hard fact to swallow that every new beginning comes from another beginning’s end. Where’s there’s life, there’s hope so the old phrase goes, but for me it was the opposite, where there’s hope there’s life. You know what it looks like, you even know what it smells like, get it back.
“How we spend our days” author Annie Dillard writes “is how we spend our lives.”Instead of waiting to be happy so we can live we should just live and do the small things that make us happy. ‘Happiness is the joy you find on hundreds of forgettable Wednesdays’- as Blogger Tim Urban describes it. There may be one thing that brings this on more so than other things- for me this was writing , my prose-zac (that sounded better in my head- apologies).
The sadness will never leave I suspect, but you may in time, not even want it to. I feel no less sad today than I did two years, or even five years ago but we have learnt to coexist pain and I and It’s ok. It doesn’t own me or control me it simply asks to join me, and I let it.
The human brain is composed of about 100 billion neurons plus a trillion glial cells. It is 73% water. It takes only 2% dehydration to affect your attention, memory and other cognitive skill. Your brain generates about 12-25 watts of electricity. This is enough to power a low wattage LED light. Albert Einstein’s brain weighed 2.71 pounds (1,230 grams) — 10% smaller than the average of 3 pounds (1,400 grams). However, the neuron density of his brain was greater than average. Your brain’s storage capacity is considered virtually unlimited. It doesn’t get “used up” like RAM in your computer. Although pain is processed in your brain, your brain has no pain receptors and feels no pain, despite its billions of neurons. You would effectively need another brain in your body to tell you that your brain was feeling pain. This explains how brain surgery can be performed while the patient is awake with no pain or discomfort.
I know less about the human brain than brain surgeons, maybe, but over the last five years I’d say I know a bit more than your average Jo, layman-wise. I know vaguely the architecture of the brain, cathedrals of soft tissue, that house the eloquent brain, this is where speech and sense is to be found and how we process and understand language, it is this brain that makes us human. It is unlike our animal brain which is only concerned with staying alive and warding off hunger.
I know that while doctors treat illness and disease, cancers, neurosurgeons work in the crucible of identity; ‘every operation on the brain is, by necessity, a manipulation of the substance of ourselves and every conversation with a patient undergoing brain surgery cannot help but confront this fact.’ P.K.
As Neurosurgeon Paul Kalanithi puts it “At those critical junctures, the question is not simply whether to live or die, but what kind of life is worth living. Would you trade your ability-or your mother’s- to talk, for an extra few months of mute life. The expansion of your visual blindspot in exchange for eliminating the small possibility of a fatal brain haemorrhage? Your right hand’s function to stop seizures? How much neurologic suffering would you let your child endure before saying death is preferable? What makes life meaningful enough to go on living?” His colleague concurs “ Sometimes it’s better when they die. Only later would I realise that (our trip) had a dded a new dimension to my understanding of the fact that brains give rise to our ability to form relationship and make life meaningful, and sometimes they break”..
When a family member or someone you love is diagnosed with a brain tumour, bleed, brain cancer, it differs to any other diagnosis in that the brain is no ordinary body part, it is essentially who we are. Therefore with this diagnosis in mind, you may loose this person well before they actually die. In neuroscience this is called ‘the binding problem’- the extraordinary fact, which nobody can explain, that mere brute matter can give rise to consciousness and sensation. Kalanithi writes- “In those moments, I acted not as I most often did, as death’s enemy, but as its ambassador. I had to help those families understand that the person they knew- the full, vital, independent human- now lived only in the past.”
Henry Marsh (James’ surgeon opens his autobiography with an account of cutting into the brain to cut away a tumour. He writes: “I look down my operating microscope, feeling my way downwards through the soft white substance of the brain, searching for the tumour. The idea that my sucker is moving through thought itself, through emotion and reason,that memories, dreams and reflections should consist of jelly is simply too strange for me to understand. All I can see in front of me is matter.” It isn’t any wonder then that he feels that-“It’s difficult to do nothing. But death is not always a bad outcome, you know, and a quick death can be better than a slow one.”
Kalanithi tells of an operation he performed on a sufferer of Parkinson’s with a tremor in one of his hands. The process involved placing an electrode on the particular part of the brain that was actioning the tremor, electrode paced and the tremor stopped as all eyes were on the man’s hand. However the patient’s voice rose above their murmuring observations ” I feel overwhelmingly sad ” as he began to cry. “Current off” Kalanithi instructs his junior- “Oh now the feeling’s gone”, the man reports. They repeat the procedure a second time. And a second time the man cannot contain his sadness. Which makes one wonder-is grief simply a matter of an active electrical current or over-stimulation of certain neurons?
James tumour was located in the left frontal lobe, the left side of the brain controls reason, language and movement. It’s dominant, unless perhaps you are a serial killer. But the most sacrosanct regions of the cortex are those that control language, comically called Wernicke’s and Broca’s areas. One is responsible for understanding language, the other for producing it. Damage to the former means that although the person may still be able to speak they can no longer understand what is said to them, and the language they do produce may be a series of disjointed phrases, “a grammar without semantics”. Damage to both and the patient become “an isolate” ” After someone suffers a stroke or head trauma, the destruction of these areas often restrains the surgeon’s impulse to save a life. What kind of life exists without language?” P.K.
After, I think James’ second prognosis. I called his surgeon and asked for a blow-by-blow account of what would happen to him . He went into great detail. It was a secret we both held from James and it was a very kind secret.
James’s death was in one way brutal and aggressive, huge amounts of blood on the brain, cerebral oedema (brain swell), followed by a decompressive craniectomy. But as far as he’s concerned he went to sleep after one of many happy days with all those he loved and never woke up. A happy end to an extraordinarily happy life. It is what all of us would want- particularly so when considering the alternative. Others have not been so lucky.
Terrible job, neurosurgery. Don’t do it.- Henry Marsh- Do No Harm.
I come Unto This Last.
On the 9th of March a 36 year old father was rushed to hospital. 3500 miles later at the exact same time, on another continent, another 36 year old father was rushed to hospital. They both died on that day, (although this would be a more technical pronouncement for the latter two days later) both leaving behind loving wives, daughters and one a son. One was a brain surgeon with incurable lung cancer the other with incurable brain cancer. They were born at the same time and they died on exactly the same day. Both wives wrote of their husbands, both exceptional in one way or the other. What connects them is the dead man’s book- When Breath Becomes Air– a story known only too well for survivors of this day.
Here is my first hand account of when breath becomes air:
It is twilight and you stand in a hedge wearing a head torch with your five year old son. You are soon joined by a waddling girl, she too has a head torch, you are whispering in her ear and you are looking for foxes which have just run into your friend’s garden. Now you are laughing and I am pestering you to get going. We have to get back to London so you have enough time to eat in order to allow a two hour window for your Chemo pill to settle. You assure me you are coming but make no sign of moving. Then you say the strangest thing. It’s only now strange with hindsight. You say: ” I don’t want to leave, it’s just so beautiful”- I register this but don’t dwell on it. We leave amid beeping horns and waving hands out of windows and promises to be back in a few weeks for your Godson’s christening. We put our favourite tracks on the stereo and chat while our children fall asleep to our familiar voices. Mostly we chat about moving house and what car we will need if our third child were to arrive at some point. I pull up and we decant each child into their beds.
We meet again in the kitchen, still in a mess from having up and left so suddenly that morning. The radio is still on and I remember that you’d said when Will Smith came on the radio signing ‘Miami’- “You forget that Will Smith can really actually sing”…. I should have known there must have been something wrong with your poor brain after that comment. I smiled and raised an eyebrow and you smiled too and sipped your coffee.
I go upstairs and finish building Flynn’s lego world which I have been secretly preparing for months, ready for the great reveal the next morning. I stay there for an hour and am so taken aback by the fact that you are not calling for me to join you (usually after ten minutes) that I go to investigate. You tell me you are not feeling very well so I put you in the shower and then to bed. You throw up in the shower in such a violent way that it must only be the kind of vomiting one does when about to die. But I assume it is the chemo and put you to bed with a bucket while I call the hospital. You continue to do this all night but they tell me it’s normal.
The next morning I wake you to tell you I’m going on the school run but I will come back and then drive you to your appointment. You are drowsy and unresponsive but give me a slight nod. On the way home I have organised with Tara that she will come and take Celeste so I can take you to hospital. When you don’t speak to me when I return to your bedside I call an ambulance. They take 40 minutes to arrive and they can’t get you to say much either. You open your eyes but only momentarily. Celeste is sitting on a black armchair in our bedroom and although she is only Two, she asks- “Is he going to be okay Mummy”? “Of course he is” I tell her. Then Tara arrives, on my staircase, ashen faced, and I burst into ears when I see her. It makes no sense to me why I would do this if I really thought you’d be fine. I tell the ambulance crew that I will follow them to the hospital, I’d done this before except this time I don’t pack shoes or things that might be needed. Instead I help them dress you. I choose the faded black T-shirt you’d worn when I first met you. But it was faded and worn now because of endless washing after I told you you could never get rid of it. The next time I would see it would be when a nurse fished it from a bin in a resuscitation room in two pieces. Your mother would then take it home and wash it for me, so that I could keep it, despite the fact that she would never see you again. I told her that I wanted it to keep its smell.
I arrive at the A. and E. desk and when I give my name at the desk, the receptionist knows exactly who I am and ushers me into a room no-one should ever see. What happens next reaches the absurd.
I am left waiting for no more than a minute and two men in scrubs enter the room. The first is a large, senior looking Indian man, clearly the one in charge, the second, a skinny white man. The first man looks as serious as I have ever seen another person, he looks like he has been crying, as does the other. They ask what drugs he was taking- I jump to an immediate and positive conclusion that this must mean that he’s still alive- if they are so worried about this. Then they tell me something has happened in the ambulance on the way to hospital, they talk about pupil dilation at great length and I can’t process what this means or if there is any hope. I remember thinking , I ‘m not ready, I know it’s coming but I’m not ready, not yet. My Mother-In-Law is on her way and so I’m thinking, she’ll understand what they are talking about, she can explain it.
I ask if I can see him and they say yes. We go into a room called a resuscitation room and there are so many people next to my husband and he’s attached to a ventilator. I am immediately aware of his huge size and how far away he looks. I wondered at that point- will I ever see you again- I already missed him.
I am consumed by pure and abject fear. So much so that my muscles twitch, I need the loo, but also to throw up. I am shaking very slowly and hot and freezing cold at exactly the same time. A nurse is crying and when I ask this crying nurse why he is attached to a machine she says- Darling your husband is very very sick. So I shout at her: “Of course he’s sick, he has a brain tumour, but he’s not dead”. There is a very nice nurse there called Josh I think who’s chatting to my Mother-In-Law. We are told that James has suffered a massive brain bleed so severe that they’ve decided to take over the breathing for him, a scan to be done in the following twenty minutes will revel the extent of the damage and also if it is fixable by an operation. And so we wait.
Two hours later. James is transported from Chelsea and Westminster to Charring cross hospital to a ward most people will never see. My friend Alex and I joked that when caught in one of the lifts with a doctor and you press the eight floor, they slowly drop their heads. James has a pointless and unnecessary operation and we wait to see if he will ever wake up. Some forthcoming register with few people skills tells us that we should wish that he never wakes up, he is what James’ wonderful surgeon Henry March would so rightly call “wrecked”.
We sat by the bed with styrofoam cups, iPhones, and beeping monitors, for the next two days. There were always a few people by James’ bed. Most people waited their turn in the waiting room but everyone got their time.
Initially I got a shock by all those people in the waiting room, sometimes twenty/thirty people. My sleeping was little and erratic, so if I wondered in at any time, 4.25a.m. for example there was always someone there, mostly boys, sometimes drinking, sometimes playing something or other, sometimes just sitting. Sometimes I would smile at them on my way to the loo or sometimes I would join them.
At nights it was only really me and his mum by the bed, everyone else was either in the waiting room sleeping on those awful red leather chairs or had gone home for their few hours off.
One day when my friend Tara was sitting with James and I’d gone to get some tea, I came back to the bed and quite ignoring her, I had the most overwhelming urge to smell James so I put my face close to his neck and inhaled. When she saw this she gasped and collapsed into her husbands arms. I slept with James in his bed each night, often not sleeping but chatting to Stephen his nurse. I remember knowing they’d allow this for so long but eventually they would be taking him away from me so I had to make the most of those moments. I knew I had two nights tops and I did’t want to miss a second.
The next morning, they would declare him Stem Brain dead by inflicting pain on him to prove that he had no brain left to feel pain. They made us be witness to this. Two hours before this moment, I put some earphones to his ears and played his favourite music through them. I then leant in and whispered- I’m letting you go, fly away. I can never know for sure but I’m convinced that that is the honest moment when breath became neither breath nor air. I didn’t stick around for the second tests. He’s gone. I walked out of that building and he left with me.
Then I got a bus home. I opened the door, I looked around my house, and nothing moved. This was day one. Ground Zero. This is what happened to you.
Since that day I continue to talk about James and still I watch people flinch. I do this mainly for Flynn as Celeste as one day their memories will fade, especially those of Celeste who may never have any. It is important that they know their father. In time they will learn about him through this blog and the stories of those in the waiting room with red leather chairs. The best thing anyone ever said to me/them was in the Letter that Tom Connolly wrote to them, published on this blog. “You may feel that you didn’t know him” he writes “but he knew you”.
In order to continue this blog as an analysis and experience of grief and not a blogging book review, it is with caution that I mention yet another book. A very unusual book made it’s way into my possession via my friend Weezey a while ago (Grief is the thing with feathers). This book features two young boys who loose their mother and they and their father are sagging in the sadness. A friend comes in the unlikely guise of a crow. -antagonist, trickster, healer,babysitter. This sentimental bird is drawn to the grieving family and threatens to stay until they no longer need him. He watches over them particularly at night-time while they sleep.
When my children get upset at nighttime or find the missing particularly harsh, what they really want to hear is that it’s not all final, that there is a possible reunion or at least that they are being watched, looked after. To help them I use a particularly beautiful tool designed and given to me by my friend Martha on my first christmas alone. This works well especially with the youngest who now sleeps with it by her bed. I use it because I have no crow. It is a box with a pea-pod inside which she had made by a local artist. Open the box and at first there is an obvious discrepancy, one of the peas is missing, there is a space but it’s gone until you see it is in the night sky above them and only joins when the box is firmly shut.
We have been watching inside out… a lot. Mainly because Celeste is having a tricky time of it of late. Flynn has been seeing a play therapist who has worked wonders, or perhaps it is he who is the wonder, and I see a Traumatologist (yes such a thing exists, but I suspect only in West London), but I fear poor old Celeste has been left a little behind in terms of coping specialists. I hoped because she was so young when she lost her dad that she would need the least amount of help (she was only two), but I was wrong. I perhaps should have suspected something was amiss when she invented a new game titled – Doctors and Snow Monsters….
Her Granny, myself and Flynn’s play therapist believe she is experiencing delayed grief, where the act although almost half her short lifetime ago has caught up with her cognition and emotional maturity. What would have been an intangible thought/ experience to her before is now something which can be fully realised and understood, well as much as a four-and-a-half-year-old is capable of.
For those of you not to have experienced the joy of this wonderful creation allow me to fill you in. Inside Out is a Disney animation (but don’t let that put you off) about an 11-year-old girl called Riley Anderson (true story). Riley lives in Minnesota with her parents, is passionate about ice hockey and loves her friends, her home and her family. She is then forced to move to the city when her Dad is offered a new job, live in a smaller, unfamiliar house and leaving all her friends behind.
Within Riley’s mind exist five personifications of her basic emotions—Joy, Sadness, Fear, Disgust, and Anger— which gradually come to life and influence her actions via a console in her mind’s Headquarters. They all have colours and sadness is typically blue. Joy is the boss and dominates all of Riley’s emotions and therefore experience because Riley is so happy. As she grows up, her experiences become memories, stored in colored orbs, which are sent into long-term memory each night. Her five most important “core memories” (all of which are happy ones) are housed in a hub that each power an aspect of her personality which take the form of floating islands. In Headquarters, Joy acts as a leader to maintain Riley’s cheerful childhood, but since she and the other emotions do not understand Sadness’ purpose, she frequently tries to keep Sadness away from the console.
When Riley’s life begins to change for the worst we see sadness take a more active role then she did in the previous 10 years of Riley’s life. Sadness begins touching Riley’s happy memories, turning them sad, Joy tries to guard them by isolating her. On Riley’s first day at her new school, Sadness accidentally causes Riley to cry in front of her class, creating a sad core memory. Joy, panicking, tries to dispose of it, but accidentally knocks the other core memories loose during a struggle with Sadness, deactivating the personality islands. Joy is no longer in charge of the console so the other emotions try to maintain Riley’s happiness in Joy’s absence with disastrous results.
When Riley finally opens up to her parents about her feeling and tells them that she misses her old home she feels sadness, however when they comfort her and connect with her she feels joy in conjunction with her sadness creating a new core memory that combines these two emotions. A year later, Riley has adapted to her new home, made new friends, returned to her old hobbies, and adopted a few new ones (fueled by new, more nuanced core memories from combinations of her emotions). Inside Headquarters, her emotions all work together on a new expanded console with room for them all, enabling Riley to lead a more emotionally complex life whereby one can experience joy and sadness and all at the same time.
I recently read a review of this film that said: “The main rather brave message is that sadness is essential to an emotionally complete life and that it’s resolution is a route to a deeper tranquility and more rounded personality than shallower joys can ever provide”
Perhaps when she is old enough to understand I will explain the above to her, perhaps she will not need it explained. I might add that although she was but two, her existence was a constant source of ‘Joy’ to her father’s core memories stored tightly in his own console. I recently read a piece by Paul Kalanithi, a neurosurgeon who when facing terminal lung cancer was asked by his wife – “Will having a newborn distract from the time we have together? Don’t you think saying goodbye to your child will make your death more painful?” To which he replied ” Wouldn’t it be great if it did? – Lucy and I both felt that life wasn’t about avoiding suffering.”
James can use his words no longer but if he could he would have echoed the sentiments of Kalanithi who wrote in a letter a few weeks before his death:
Cady- I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters- but what would they say? I don’t know what this girl will be like when she is fifteen; I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past. That message is simple.
When you come to the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.
We at the Anderson Headquarters are becoming rather bored of Cancer and we are searching for a hopeful Skipper to chart our course over these particular troublesome waters.
Yesterday saw us sailing around the Solent and racing five other yachts (round-the-world Clippers organised by our best man Harry) and raising just under £20000 for Professor Stebbing and his crew at Imperial College, bringing our new total to almost £65000. This amount will pay the wages of two research scientists for one year. Although Action against Cancer are small charity/ laboratory and need a lot more funding than the relatively tiny amount we have been contributing, they have been packing in huge achievements this last year. Cancer research is slow, however here is a list of the things they have achieved recently.
The identification of important molecules that:
i. Drive breast cancer cells to grow and divide (candidate 12)
ii. Act as a tumour suppressor (candidate 1)
iii. Decrease the spread of lung and breast cancer cells (miR-515- 5p)
Other recent scientific findings by the team include how:
i. Pancreatic tumour growth is reduced by inhibiting a specific combination of molecules
ii. A protein (TP53) affects how normal cells turn into ovarian cancer cells
iii. A gene (LMTK3) is central in breast, colon, gastric and brain cancers.
Further research is underway in all of these areas with the aim of developing ways of diagnosing cancer earlier and treating it more effectively.
One if the most irritating and In my opinion, disrespectful, things numerous people say to me is : ” I really want to read your blog but it just makes me too sad….” I’d liked to present this particular post on their foreheads and ask – how’d ya like them apples? There was no sadness yesterday providing money for ground breaking research.